Sarc Fighter: Living with Sarcoidosis and other rare diseases

Every year the Foundation for Sarcoidosis Research presents a summit, where leading experts, patients and caregivers can gather to discuss what's going on with our illness. It's also a time to learn more about the latest research and to just be with others who get it. The summit is virtual this year, so you will join on line, but you still get to visit the Exhibit Hall, the plenary sessions, and have Q and A with doctors, researchers and the pharmaceutical companies which are now lining up with exciting research. In this episode of the Sarc Fighter Podcast, the FSR Director of Patient Programs, Mindy Buchanan joins me to talk about the highlights of the summit, how you can sign up and how to participate at no cost if you are unable to pay the fee. Mindy is truly excited about all the summit has to offer, and she will share that enthusiasm during the podcast. Show Notes All about the Summit: https://www.stopsarcoidosis.org/summit-2022/ Contact Mindy: [email protected] How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/ Want to learn more about the clinical trial for efzofitimod? https://atyrpharma.com/patients/clinical-trials/ aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american The New FSR Initiative https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

aTyr Pharma is launching a new clinical trial for a drug called Efzofitimod, which has thus far shown significant promise as a drug that reduces dependence on prednisone for pulmonary sarcoidosis patients. In addition, the drug has also produced positive results in helping patients improve their overall condition and quality of life. In this episode of the Sarc Fighter Podcast, aTyr CEO Dr. Sanjay Shukla joins me to talk about testing to date, and to announce what could be the final stretch of testing and analysis before Efofitimod reaches FDA approval, and would then be available to treat sarcoidosis patients. Will this be the first significant breakthrough in 20 years? Listen in as Dr. Shulka walks us through the successes so far and what must still happen for Efzofitimod to become available for patients. Show Notes How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/ Want to learn more about the clinical trial for efzofitimod? https://bit.ly/3EUOxNq aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american The New FSR Initiative https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/ The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/ The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714 Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

In Episode 64 of the Sarc Fighter podcast Mary McGowan, CEO of the Foundation for Sarcoidosis Research and Tricha Shivas, Chief Strategy Officer talk about an exciting new development that will make it easier to patients to find the right doctor, and for doctors to find the right methods to treat Sarcoidosis. Show notes The New FSR Initiative https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/ Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/ The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714 Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/ aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american Merlin: https://merlin.allaboutbirds.org/ Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] The following is an Internet generated transcript of the interview. Please excuse spelling and grammatical errors. John Carlin: welcome back to the Sarc Fighter podcast. I am so pleased today to have the people that make FSR absolutely run and operate here as guests today to talk about this new initiative. Our CEO, uh, Mary McGowan and Chief Strategy Officer Tricia Chivas are both here. Welcome to the podcast. Mary McGowan: Thank you, John. It's always a pleasure to be a guest on your podcast. Tricha Chivas: Thanks so much, John. We're excited to talk to you today. John Carlin: So the email went out this week, and we're talking late June. In 2022, FSR has a new program that deals with how FSR will be recognizing endorsing recommending clinics. Mary, tell me how all that works and tell me the gist of this new announcement. Mary McGowan: John, we're so excited this, week to have announced publicly this really exciting new initiative called the FSR Global Sarcodosis Clinic Alliance. The whole concept of this is to bring hospitals and Sarcodosis clinics together globally in the fight against Sarcodosis. So we were thrilled the very first presentation that we did was in March. We were, uh, hoping to launch this in January, but due to COVID, we couldn't for, um, obvious reasons, because the clinics were so engaged in taking care of COVID patients. And in relatively very short period of time, we are so thrilled that we had 22 esteemed founding members join us as they learned about this. Um, and we're continuing to accept founding, uh, members through September to continue to grow this and work with them as part of a leadership council. And, um, so anyway, this a

When sarcoidosis invades your life and rearranges your priorities, it's hard to cope. Sometimes it's the little things. Sarcoidosis makes most of us slow down. For some of us almost to a crawl. But even while we are slogging along there are ways to be content with our lives. Here's my stab at it. Show notes Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/ The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714 Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/ aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american Merlin: https://merlin.allaboutbirds.org/ Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

Garrie Farrow has been fighting sarcoidosis for 15 years, and maybe longer. It has spread from her lungs to other parts of her body including her ears. Yet she is still working - and still fighting. In fact she spends a great deal of time helping other Sarcoidosis patients as well. In Episode 62 of the Sarc Fighter podcast, Garrie shares the story of how sarcoidosis started out in her lungs, how doctors may have mishandled the early diagnosis and how sarc has had a tragic impact on her family. Show notes Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2 Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] The following is a web-generated transcript of my interview with Garrie. Please excuse any spelling or punctuation errors. jc Welcome back to the Sarc Fighter podcast. And joining me now is Gary Farrow, uh who plays many roles within the foundation for Sarcodosis Research as a volunteer and is coming up on 16 years as a Sarc survivor. Garrie, welcome to the podcast. Garrie Farrow: Thank you. Thank you. So much for having me today. John Carlin: So you said it's 15 years plus almost 16 years. And you knew the anniversary date, didn't you? Garrie Farrow: It's actually uh August. I started getting my appointments in April. So for me, April is the anniversary. But I didn't get the official diagnosis until August 16 years ago. John Carlin: 16 years. That's a long time. And I want to hear about when did you first know something was wrong? Garrie Farrow: Honestly, I knew something was wrong 20 years ago. Um uh I have a thing that I love, cute shoes and purses, and I have these fantastic boots that I love to wear. They were the greatest thing ever. And my feet and ankle started to swell. And um I used to play basketball in high school, so I'm used to ankle Springs. I know what my feet and ankles will do, but this was not normal. So probably uh about four or four and a half years in total going to different primary care doctors. And I am um a taller, larger woman. And so I've always been told, well, you need to lose weight. Like, I exercise every day. I'm not losing any more weight. But they're saying the reason my feet and ankles were swelling was because of the weight. So I went and lost more weight. Still couldn't wear the shoes, moved to uh a different city, found a uh new primary care position. Actually, my second one here in Tallahassee was the one who went, this is not normal. You are uh about 30, 31 at the point. This is not normal. Let's send you for a chest Xray. And that's how my journey officially started. John Carlin: Wow. Chest X. You ankles hurt. So the first thing they do is send you for a chest X ray, which wouldn't seem intuitive,

Sarcoidosis patients have shared many stories with me here on the Sarc Fighter podcast. It got me thinking about expectations. What did we expect from our lives before sarcoidosis? What do we expect now? Do we ever expect to get our old lives back -- and how hard should we try to get there. Managing expectations can be tough and perhaps frustrating. But it can also be fulfilling. In Episode 61 of the Sarc Fighter Podcast, I dig in really listen to what some of my guests had to say and look at how they are choosing to manage their lives -- and their expectations. (Be sure to listen at the end for the Full version of Zombie - The official song of the Sarc Fighter Podcast!) Show notes Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2 Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

Jack Boepple is a former Boston marathon runner. A dedicated Cyclist and a fisherman who disappears into the wilderness for a week every year with his canoe and camping supplies. But even all of that couldn't prevent sarcoidosis from attacking his heart. In Episode 60 of the Sarc Fighter podcast, Jack shares the story of how sarcoidosis knocked him back more than a few steps -- and how he never saw it coming -- even when he was in the hospital beating most of the tests. Jack Cardioversion image Show Notes: Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022 Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Below is a web generated text version of my interview with Jack Boepple. Please excuse any spelling errors. Welcome back to the Sark Fighter podcast. And joining me now is Jack Boepple Lives in Chicago and he's a fellow SARC fighter. Jack, welcome to the podcast. Thank you. Glad you to have me. So you reached out to me after listening a little bit because, • • uh, you have cardiac sarcoidosis. How did you first find out that something was not right with your heart? • • • • • • Um, actually, it was the event itself. So three years ago, March, • • um, I'm sitting on a couch • • • and I could feel • • some palpitations going on. And I put my hand on my chest and it felt like my heart was just rolling. • • So I asked my wife, can you just check my pulse? So she did, that looks fine. Then she put her hand on my chest and she's like, we got to go to the emergency room now because it was just doing all these flip flops. She could tell. She could tell there was something wrong. And I'm like, uh, • • I've had palpitations before. I'm fine. I'm just going to play through • • • • um. • • And so I didn't do anything. That was a Friday. • • And I woke up the next morning and I was still off. • • So I took a baby aspirin I sent a note to my primary, uh, provider, realizing through the portal, realizing she would not see it or address it until Monday. • • And then that day, we went for a long walk. We had friends over, smoked a cigar, had some wine, sundae, went for another long walk, came home, got on the rowing machine, rode for 45 minutes, and by rowing, actually felt better. Um, but I got a phone call on • • • • Monday morning from, um, the primary nurse. And she said • • everything you just described to me, you need to be in the emergency room right now. And I said, I don't want to go to the emergency room. So she made an appointment for to see the primary. And I saw her in the afternoon and, • • • um, she took an EKG • • and she used this very technical term • to tell me what she saw. It looks funky. I'm like, what does funky mea

Angelica Gauptman's grandmother died from complications of sarcoidosis. Angelica is trying to figure out why. She believes it had something do with the combination of Vitamin D and Prednisone. To be clear there is no clinical evidence that proves a link. Angelica is a high school senior with more than your average get up and go. She has undertaken a survey of Sarc patients, and has gotten the attention of some top level researchers. Hear her story, and the heartbreaking way her grandmother passed in this edition of the Sarc Fighter Podcast. Show Notes Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk email Angelica [email protected] Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022 Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022 Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-present

April is Sarcoidosis Awareness Month! In this episode of the Sarc Fighter podcast, three leaders from the Foundation for Sarcoidosis Research join me to talk about how the Foundation is working to raise awareness and some money for the fight, and how YOU can participate! Whether it's taking some extra steps or posting to social media with special hashtags -- it's important to help all of us in the battle for better health care and medications to fight sarc! Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022 Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

Sarcoidosis patient Robin Goble once lived an active life that included cycling, hiking and hanging out with her friends while helping to raise two teenage sons. Then sarcoidosis showed up in her life. Now she is trying to get past the problems and looking for answers while helping other sarcoidosis patients cope with their problems. Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Shakshuka Serves 4 Ingredients and Prep · 3 Tablespoons Extra Virgin Olive Oil · 1 - 4 oz can green chilies · 2 onions chopped · 1 – 14.5 oz can diced tomatoes · 2 yellow/red bell peppers · ¼ cup water or vegetable broth · 4 cloves of garlic · 2 bay leaves · 2 teaspoons tomato paste · 4 eggs (or 1 can Chickpeas drained) · 1 teaspoon ground turmeric · 2 oz feta cheese (or vegan tofu feta) · 1/8 teaspoon cayenne pepper · ¼ teaspoon black pepper · 1 – 2 cups of fresh spinach, washed and torn · 1 Tablespoon Za’atar (optional) · Cooked cous cous or rice for serving Heat oil in skillet. 12 inch is best. Set heat to medium/high. Add onions and peppers – sauté until soft. Add garlic, tomato paste, cumin, turmeric, black pepper and cayenne. Cook for about three minutes. Add in chiles, tomatoes, water, spinach and bay leaves. Bring to a simmer and cook 10 minutes. Remove bay leaves and transfer 1 -2 cups to a blender (or use an immersion blender) until smooth and return to skillet. Make 4 indentations with a spoon with the sauce and crack an egg in each well. (For vegetarian version add chickpeas in place of eggs) Cover and cook 6-10 minutes. Add feta and sprinkle with Zaatar. Serve over Cous Cous (we like Israeli) or rice. (I adapted this recipe from The Complete Mediterranean Cookbook: 500 Vibrant, Kitchen-Tested Recipes for Living and Eating Well Every Day (The Complete ATK Cookbook Series) Paperback – December 27, 2016) My family loves all the recipes we have tried. https://www.amazon.com/Complete-Mediterranean-Cookbook-Vibrant-Kitchen-Tested/dp/1940352649

Dr. Shu-Yi Liao is trying to answer the questions we all have about sarcoiodosis. How does it move within our bodies? And why do some people get it and others not? Beyond that, what can be done to stop or prevent the disease? Show Notes More about Dr. Shu-Yi Liao: https://www.nationaljewish.org/doctors-departments/providers/physicians/shu-yi-liao Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

Erica Courtenay-Mann was feeling tired all the time. Beyond tired. Fatigued and unmotivated, but nobody understood. It was the onset of sarcoidosis. After several attempts for treatment -- her doctor noticed her neck didn't look right. This is her story. Show Notes Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

In this Bonus Episode of the Sarc Fighter podcast, listen in to the special seminar hosted by The Foundation for Sarcoidosis Research as a physician and two sarc patients look at barriers to health care that cannot be overcome unless we all begin to recognize that they are real and won't go away on their own. The discussion is led by Sarc Fighter host John Carlin. Show Notes More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/ Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

As we begin 2022, there is even more reason for hope. On this episode of the Sarc Fighter podcast, Dr. Divya Patel joins me. Dr. Patel explains the clinical trial process and describes the trial she is working on at the University of Florida in connection with the Foundation for Sarcoidosis Research. Show notes Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

Calvin Harris lives in New York City, where he balances his time working as a CFO with running and giving back to his community. He also writes a popular blog called Run Your Own Race. And that's what he is doing. In this episode of the Sarc Fighter podcast, Calvin talks about how he deals with all the medications he is taking to keep his sarcoidosis under control, while he trains for a marathon with his sights set on completing the famous New York City marathon in the near future. Read Calvin's Blog https://sarcoidosisnews.com/category/columns/run-your-own-race-a-column-by-calvin-harris/ Foloow Calvin on Peloton Calvinfnharris Follow me on Peloton SarcFighter Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

As we begin a new year it's time to take a look at what's ahead in 2022. Both for ourselves and for the sarcoidosis community at large. In episode 53 I take a look at what you can do to fight sarc in your own personal battle as you make your new year's resolutions, as well as a look t what researchers, doctors and others are doing to further the fight against the disease, whether it's a new medicine, sarcoidosis awareness or patient outreach. Show notes Sarcoidosis Awareness Film: https://www.purpledocumentary.com/ Nourish by Lindsey: https://www.nourishbylindsey.com/ Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751 Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

Amy Whaley is a caregiver. Her husband, Bobby suffers from a severe case of sarcoidosis. They are fighting sarc together. In this episode of the Sarc Fighter podcast, Amy talks about her life, her role as a a caregiver and how life changed shortly after she and Bobby were married. Amy is the first care giver to appear on the Sarc Fighter podcast. Like all caregivers, she is essential to the life of the person with Sarcoidosis. Without these loving people's sacrifice, we could not go on with our daily lives. It's important to note the impact sarcoidosis has not just on the patient, but those around them. Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

Warren D. Robinson is a Television Producer with a law degree to boot. When his father suddenly died from sarcoidosis he decided he wanted to join the fight to help patients suffering from Sarc. In this episode of the Sarc Fighter podcast, Warren tells the story of how his father showed no signs of the disease until after his sudden death. Here was a man who lived to help others and always took great care of himself, from getting proper exercise to eating right and everything else healthy people do. Then one day he just didn't wake up. Learn more about Warren and his background as an attorney and producer for Netflix. https://www.warrendrobinson.com/ The back story to Buried by the Bernards -- Warren's show on Netflix https://indianapolisrecorder.com/indianapolis-producer-brought-us-buried-by-the-bernards/ Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

Adam Bernardi has a great job working in Hollywood. He's met some big name celebs, and even worked with them. He's edited or worked on projects you've likely seen. But none of that could prevent sarcoidosis from attacking his nervous system. In Episode 49 of the Sarc Fighter podcast, Adam shares the story of how difficult it was for doctors to diagnose his sarcoidosis, and how the disease has shut down parts of his body that at times can cause embarrassing situations. Thanks to Adam for an honest and forthright discussion. Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

Dr. Jinny Tavee, the Chief, Division of Neurology at National Jewish Health clinic in Denver is one of the leading experts in the United States when it comes to neurosarcoidosis. Neuro sarc only affects a small percentage of all sarcoidosis patients, but her approach for treatment extends beyond those who are unfortunate enough to have sarc in their brain or spinal cord. In Episode 48 of the Sarc Fighter Podcast, Dr. Tavee delves into how your entire body, mind, and spirit can be engaged to help you overcome sarcoidosis-related issues. More About Dr. Jinny Tavee https://www.nationaljewish.org/doctors-departments/providers/physicians/jinny-tavee See a Talk Jinny gave for the Foundation for Sarcoidosis Research https://youtu.be/zzOT-tpsUBQ Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

African American Women are three times more likely to suffer from sarcoidosis than whites, and their sarcoidosis mortality rate is 13 times higher than Caucasians and 1.5 times higher than African American men. Why? What is going on with women of color that isn't happening in other groups? Why are they having a harder time than everyone else. There are multiple reasons, and the Foundation for Sarcoidosis Research is hoping to get to the bottom of it. FSR has created the Women of Color Patient Advisory Committee and the Women of Color Clinical Advisory Committee to address these concerns. Starting in 2021 these patients, clinicians and researchers are going to be looking at what's behind these terrible outcomes for these women. Join me in Episode 47 as Sarc patient Chasta Posey and Dr. Ennis James of the Medical University of South Carolina take a deep dive in the causes and effects of the way African American women are treated. The news release from the Foundation for Sarcoidosis Research has more startling statistics on the impact on African American Women. https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/ Hear more about Chasta's story! https://www.podbean.com/ew/pb-n9ky6-d8615a Meet Dr. Ennis James: https://youtu.be/SaKMLmfYmCA Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected]

Lisa Pflug's hand started shaking one day and she couldn't make it stop. For months neither she nor her doctors could explain it. Then they started looking at her spinal cord, and they found the problem. In this Episode of the Sarc Fighter Podcast, Lisa shares the story of her journey through sarcoidosis, from her shaking hand to life on prednisone and hopefully a better life thanks to Remicade. Lisa is right handed and she is thankful sarcoidosis has only affected her left hand, allowing her to pursue her passion as a painter. Here is one of her creations -- a flying egret. Promised links are below. But here are a couple of photos from my trip to Zion, Grand Canyon, and Bryce National Parks. Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] S

Atyr Pharma has just released the results of a patient trial of a drug called aTyr 1923. The drug had shown early promise, and the trial more than verified that thinking. Atyr 1923 Not only allowed patients to dose down or even off of Prednisone, but it actually improved lung function in patients -- something that is rarely if ever accomplished. In this episode of the Sarc Fighter podcast, aTyr President and CEO, Dr. Sanjay Shukla joins me to talk about the results, the meaning behind the trial and what happens next, as this leading edge science advances to the next stage, and hopefully to the point where it becomes a solution for so many people in the Sarcoidosis space. Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Living in a rural area can be tough when you are faced with a rare disease like sarcoidosis. So Imagine living in remote North Dakota and trying to find a diagnosis and medical care. That is the case for Brandi Cleaver. At one point she and her friends held fundraisers in order to get her to Cleveland and the care she needed. At one point in her life Brandi was one of those people who showed up on horseback during search and rescue operations. Now, she is stuck at home most of the time, practicing self care and raising her son. In this episode she shares her story of fighting back against sarcoidosis. John's Moose Encounter! https://youtu.be/fXXTdVo90Zg (You'll enjoy this Juliet's Story: https://beatsarc.podbean.com/e/juliet-coffer-can-barely-walk-without-losing-her-breath-but-she-was-determined-to-step-up-to-fight-sarcoidosis/!) Meet Joe McCorry: https://beatsarc.podbean.com/e/episode-4-joe-mccorry-has-been-fighting-sarcoidosis-for-a-long-long-time/ Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Maybe we could call it "sarcoidosis creep." For people who have chronic sarc, it seems like if it doesn't get better, it slowly gets worse. When that happens, people's lives change. Their activities become more and more curtailed. Usually because their health is declining. That's what happened to Joe McCorry of Chicago. In this episode of the Sarc Fighter podcast, Joe talks about how sarc has taken over different organs in his body and how it's forced him to slow his life to a crawl. The latest blog from Charlton Harris: https://sarcoidosisnews.com/2021/08/23/dont-have-anything-prove-with-sarcoidosis/ Charlton's Interview on the Sarc Fighter Podcast: https://beatsarc.podbean.com/e/sarc-fighter-charlton-harris-is-having-a-hard-time-breathing-a-really-hard-time/ John's Moose Encounter! https://youtu.be/fXXTdVo90Zg Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Juliet Coffer lives in a cottage in the UK. By her description, it is a small home, yet her lungs only permit her to take a few steps at a time without running out of oxygen. In this episode, Juliet describes what it is like to push on when every breath seems to be an adventure. But not only that -- she has found a way to get around her house in a way that has raised tens of thousands of dollars to fight the disease. Learn more about her remarkable spirit in this episode of the Sarc Fighter Podcast. From Juliet: Just Giving page for details of my fundraising, if anyone would like to donate to my campaign for SarcoidosisUK: https://www.justgiving.com/fundraising/julietcoffer Interview with BBC local TV where they came to film the last 100m of my walk: https://www.youtube.com/watch?v=KNZlMiNV2z4 SarcoidosisUK ‘ Patient Story’ and the full story behind why I did my fundraising: https://www.sarcoidosisuk.org/juliet-coffer-patient-story/ I can be contacted on Twitter: @julietcoffer Instagram: juliet_coffer Facebook: Juliet Coffer (I believe there’s only one of me!) ohn's Moose Encounter! https://youtu.be/fXXTdVo90Zg Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ MORE FROM JOHN Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Dr. Matt Baker at Stanford University is studying Sarilumab also known as KEVZARA as a treatment for sarcoidosis. Sarilumab is already approved for rheumatoid arthritis, but it's anti-inflammatory properties make it a great candidate to treat sarcoidosis as well. In this interview, Dr. Baker explains in layman's terms how Sarilumab works in your body to keep the autoimmune process from creating inflammation, which in turn causes many of the problems people suffer with sarcoidosis. Matt Baker's bio and info: https://profiles.stanford.edu/matthew-baker Matt's research on Sarcoidosis: https://www.stopsarcoidosis.org/sarilumab/ John's Moose Encounter! https://youtu.be/fXXTdVo90Zg Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Rebecca Stanfel has been dealing with sarcoidosis for 17 years. Not just dealing with it, but at times, barely hanging on. All of this from a once world class cyclist, wife and mother who happens to have an amazing gift for writing. Her essays on living with sarcoidosis while struggling with the pandemic have been published in the Washington Post and HuffPost. During the pandemic, Rebecca moved away from her family for eight months -- to ensure her immune system would not be compromised by her husband and son who were not able to quarantine simply due to their daily responsibilities. Rebecca has had such a tough run with sarc, to the point she has been bed-ridden for months at a time, that she could not risk getting COVID-19. In this episode of the Sarc Fighter Podcast, Rebecca talks about her writing, her decision to move out and the years-long struggle she has faced as sarcoidosis overtook much of her body. Washington Post Essay: https://www.washingtonpost.com/health/pandemic-requires-patience-time-will-pass/2021/04/16/a75cdeea-9631-11eb-b28d-bfa7bb5cb2a5_story.html Huff Post Essay: https://www.huffpost.com/entry/immunocompromised-covid-vaccine-cdc_n_60b043c9e4b04ddf13ebecd6 Rebecca's Blog Chronic Town: https://chronicville.wordpress.com/ Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ The following is a web-generated transcript of this podcast. Please excuse grammatical and spelling errors. John Carlin: Coming up on the Sark Fighter podcast. Rebecca: And I couldn't get out of bed. I mean, literally, I couldn't get out of bed. I couldn't walk. There were eleven steps from the bed to the toilet, and I would fall over more than once. I broke a wrist. John Carlin: Cyber bribs The Sark Fighter brings you FSR patient advocate and writer Rebecca Stanford, who has recently published in the Washington Post and Huffington Post. Rebecca: I was saying to myself, I was saying to my family, I was saying to the world, my health and my life are worth enough for me to do this. John Carlin: Rebecca's, amazing, um, perspectives. Coming up next here on the Sark Fighter podcast. Rebecca: This is the Sark Fighter podcast living with Sarcoidosis and other rare diseases. Here's your host, John Carlin. John Carlin: Well, hello and welcome. This is episode 41 of the Sarc Fighter podcast, brought to you in part by a grant from a tire Pharma. I do this podcast to offer my fellow Sark Fighters hope. The official Sark Fighter song is called Zombie by Mark Styer and his band, the White Hot Lizards. You can hear Mark's story, the story behind his lyrics in episode twelve, and just tell me if you listen to that song, if it doesn't kind of paint a picture of your life. I call this the Sark Fighter podcast because I'm fighting Sark. And so are you. Whether you're a caregiver, a patient or researcher, it's a place where we all can gather. People tell me they feel like they're all alone. They don't know anybody else who has Sarcastosis. They can't find treatment for Sarcoidosis or maybe effective treatment or diagnosis. And I just want to let everybody know that there is a reason for hope. We talked to fellow, uh, Sark patients. We've talked to the top researchers in the United States, especially the last couple of episodes, people from places like Yale and Stanford and Sarcodosis UK. And really, the podcast has exceeded my own expectations in terms of its, uh, reach and the accessibility of the people who are really making a difference as all of us try to find a way to get through a life with Sarcoidosis. And I just have to tell you that we, uh, do release every other Monday. And as I'm speaking today, my trusty do

Dr. William Damsky, MD, Ph.D., is a leading researcher at Yale University. He is pioneering a study using the off label drug, Xeljanz (say:ZEL-janz) to fight sarcoidosis of the skin, with so far - great success. Damsky and his team have been able to make disfiguring cases of dermatological sarcoidosis disappear in a handful of cases. They are now moving ahead with a more robust clinical trial to see just how promising this treatment may be -- perhaps for sarcoidosis in other parts of the body as well. In this Episode of the Sarc Fighter podcast, Dr. Damsky explains in easy to understand terms how this drug works within the body to block the autoimmune response behind sarcoidosis. William Damsky MD, PhD Bio https://medicine.yale.edu/profile/william_damsky/?tab=bio Xeljanz https://www.xeljanz.com/ Background on the study at Yale School of Medicine https://medicine.yale.edu/news-article/yale-experts-treat-severe-disfiguring-sarcoidosis-with-novel-therapy/ Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Bonus Episode Sarcoidosis and Prednisone https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Sarcoidosis UK is doing its best to fight sarc in the United Kingdom. The organization is small but mighty and looking to grow its influence as it raises awareness about the disease and reaches out to patients to offer them help in a confusing sarcoidosis world. In Episode 38 of the Sarc Figher podcast, Leo Casimo, Senior Executive, joins in from London to talk about the efforts of Sarcoidosis UK , and how patients there are coping with the disease while tryng to help one another and raise awareness for research. Here's a link to Juliet's fundraiser and story: https://www.justgiving.com/fundraising/julietcoffer Sarcoidosis UK https://www.sarcoidosisuk.org/ Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Charlton's blogs https://sarcoidosisnews.com/category/no-tears-for-sarcoidosis-a-column-by-charlton-harris/ My probiotic Just Thrive https://justthrivehealth.com/products/probiotic?variant=25256665251940 The Omega 3 product I have been taking https://www.nordicnaturals.com/consumers/ Just so you know I am not affiliated with any of these companies in any way. I talked about these products in the podcast so I'm sharing my information with you. I buy them on line or in the store and pay full price! Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Charlton Harris is a strong voice for Sarcoidosis patients, thanks to his blog, No Tears for Sarcoidosis. And he knows the Sarc story first hand, as the disease has severely damaged his lungs to the point he needs to stay on oxygen much of the time, and a long walk is a hard day. Despite all that, Charlton perseveres and continues his work as a professional video editor and producer. In this episode of the Sarc Fighter podcast we meet the man behind the blog and learn about his personal struggle with sarcoidosis. Want to read all of Charlton's blogs? https://sarcoidosisnews.com/category/no-tears-for-sarcoidosis-a-column-by-charlton-harris/ Sarcoidosis News https://sarcoidosisnews.com/ My probiotic Just Thrive https://justthrivehealth.com/products/probiotic?variant=25256665251940 The Omega 3 product I have been taking https://www.nordicnaturals.com/consumers/ Just so you know I am not affiliated with any of these companies in any way. I talked about these products in the podcast so I'm sharing my information with you. I buy them on line or in the store and pay full price! Don't forget the upcoming FSR Summit on June 12 &13, 2021. Here is a link to sign up. https://www.stopsarcoidosis.org/virtual-patient-education-summit-2021/ I recently moderated a conversation for FSR about dealing with prednisone. Almost all of us have dealt with it at one point or another. One doctor on the panel even called it, "poison." Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

With vaccines for COVID-19 now available, Sarcoidosis Warriors are rightfully concerned about how the vaccines might impact them. Will they interact negatively with my condition or my medications? Can the vaccine trigger a flare? Will the vaccine work if I'm immune suppressed? Sarc Fighter Podcast Host John Carlin interviews two leading doctors to get answers to your questions. Dr. Peter Sporn, the Director of the Northwestern University Sarcoidosis Center of Excellence and Dr. Wonder Drake of Vanderbilt University School of Medicine answer all of your questions and concerns. Don't forget the upcoming FSR Summit on June 12 &13, 2021. Here is a link to sign up. https://www.stopsarcoidosis.org/virtual-patient-education-summit-2021/ I recently moderated a conversation for FSR about dealing with prednisone. Almost all of us have dealt with it at one point or another. One doctor on the panel even called it, "poison." Listen to the Town Hall: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/ Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Janet Mockovciak is in her 60's but she may have been fighting Sarcoidosis since she was a teenager! Janet has been an active outdoor person having traveled to Africa to follow gorillas, and Patagonia where she participated in all kinds of outdoor adventures. She will talk about how sarcoidosis has forced her to curtail her explorations -- and made her adopt a new normal. But she isn't giving up! At the end of the recent ski season, she took to the slopes with an oxygen tank in her backpack. Go Janet! Janet is a fellow member of the Patient Advisory Council for the Foundation for Sarcoidosis research. As such she is helping to bring the patient voice to the Foundation to help ensure that our voice as patients is heard and acted upon by those on the front lines of fighting the disease. Don't forget the upcoming FSR Summit on June 12 &13, 2021. Here is a link to sign up. https://www.stopsarcoidosis.org/virtual-patient-education-summit-2021/ I recently moderated a conversation for FSR about dealing with prednisone. Almost all of us have dealt with it at one point or another. One doctor on the panel even called it, "poison." Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Nadia Silvera may need a double lung transplant because of sarcoidosis. Nadia reached out to the Sarc fighter podcast after hearing some of the stories you are telling. Lioke many people she limped along with Sarcoidosis for years, not realizing how truly serious it might be. Now she is staring down the face of a serious procedure that may save her life, but will change it forever. Listen as she tells the story of not wanting to deal with the side effects of the drugs, while not knowing that sarc was slowly taking over her lungs. Also I will update you on the elimination diet and my recent bout with a tumor in my bladder. Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE Nourish by Lindsey: https://www.nourishbylindsey.com/ https://www.healthline.com/nutrition/elimination-diet Meet Lindsey Norenberg https://www.nourishbylindsey.com/about Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451 Just Thrive Probiotics https://justthrivehealth.com/ More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

As part of Sarcoidosis Awareness month, the Foundation for Sarcoidosis Research asked me to host a Town Hall meeting on the topic of prednisone with a panel that included Jessica Reid, a fellow sarc fighter, who has faced years of treatment with prednisone, Dr. Elliott Couser Chair of FSR's Scientific Advisory Board, and Dr. Sanjay Shukla CEO of aTyr Pharma which is working on a steroid-sparing drug that may offer relief for patients so they do not have to endure the terrible side effects from prednisone. FSR asked me to host the event, which I gladly did after suffering from two years of prednisone therapy. Here is the news release on the event. https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-and-foundation-sarcoidosis-research-announce-town Watch the Predisone Town Hall on You Tube https://youtu.be/dNwbcBIyQhE More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Sarcoidosis at some level, is inflammation in our bodies -- where we don't want it and where it can cause permanent damage to our organs. One theory in fighting it, is to eat healthy foods i.e. those foods like sugar, grains and dairy that are known to cause inflammation. Lindsey Norenberg watched her husband struggle with cardiac sarcoidosis, and she decided to change careers after seeing the healing effects of proper eating. In this epidose of the Sarc Fighter podcast, Lindsey talks about how she helped her husband, and is helping me to find a path to better eating. Stronger than Sarcoidosis: https://view.creativemail.com/v1.0/campaigns/ef228b2c-ee52-4522-a841-e38b27d00736/view FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events Nourish by Lindsey: https://www.nourishbylindsey.com/ https://www.healthline.com/nutrition/elimination-diet Meet Lindsey Norenberg https://www.nourishbylindsey.com/about Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451 Just Thrive Probiotics https://justthrivehealth.com/ Panel discussion on steroids and sarcoidosis to be held on Tuesday, April 27 at 12:00pm ET / 9:00am PT SAN DIEGO, April 20, 2021 (GLOBE NEWSWIRE) -- aTyr Pharma, Inc. (Nasdaq: LIFE), a biotherapeutics company engaged in the discovery and development of innovative medicines based on novel biological pathways, and the Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients, today announced that they will hold a Virtual Town Hall on Steroids and Sarcoidosis to discuss treatment options and strategies for patients living with sarcoidosis. The event will be held on Tuesday, April 27, 2021 at 12:00pm ET / 9:00am PT. The Town Hall discussion will feature a panel of leading experts related to sarcoidosis treatment and advocacy, including: John Carlin (Moderator) – Host, Sarc Fighter Podcast, FSR Patient Advocate and member of FSR’s Patient Advisory Committee Jessica Reid, RN, FNP – FSR Patient Navigator for Sarcoidosis Elliott Crouser, MD – Professor of Pulmonology, Critical Care and Sleep Medicine, The Ohio State University and Chair of the FSR Scientific Advisory Board Sanjay S. Shukla, MD, MS – President and CEO, aTyr Pharma Registration is open to anyone who wishes to attend. For more information and to register, please visit FSR’s website at https://www.stopsarcoidosis.org/steroids-and-sarcoidosis-town-hall-meeting/. Following the event, a replay will be available on the aTyr website at www.atyrpharma.com. “We look forward to participating in this important discussion with FSR and other leading experts regarding current treatments for sarcoidosis and the need for new therapeutic options with increased efficacy and reduced side effects for this chronic, debilitating disease,” said Sanjay S. Shukla, M.D., M.S., President and Chief Executive Officer of aTyr. “While corticosteroids are a treatment option for many sarcoidosis patients, they have limited efficacy and may have serious side effects when used long-term. ATYR1923 offers a potential new mechanism to resolve lung inflammation associated with pulmonary sarcoidosis, a form of sarcoidosis in the lungs, and may be a potential alternative to steroid treatment that can improve patient outcomes with reduced toxicity.” “We are pleased to collaborate with aTyr for this important event on steroids and sarcoidosis,” said Mary McGowan, CEO of FSR. “The mission of FSR is to support patients through research and education, so it’s especially timely to have this discussion during Sarcoidosis Awareness Month as part of our ongoing efforts to discover possible treatments.” Sarcoidosis is an inflammatory disease characterized by the formation of granulomas, clumps of inflammatory cells, in one or more organs in the body. Sarcoidosis in the lungs is called pulmonary sarcoidosis and occurs in more than 90% of all sarcoidosis patients. Pulmonary sarcoidosis is a major form of interstitial lung disease, a group of immune-mediated disorders which can cause progressive fibrosis, or scarring, of lung tissue. Approximately 150,000 to 200,000 Americans live with pulmonary sarcoidosis. The prognosis for patients with pulmonary sarcoidosis ranges from benign and self-limiting to chronic, debilitating disease, permanent loss of lung function and death. Current treatment options include corticosteroids and other immunosuppressive therapies, which have limited efficacy and are associated with serious side effects when used long-term that many patients cannot tolerate. About ATYR1923 aTyr is developing ATYR1923 as a potential therapeutic for patients with inflammatory lung diseases. ATYR1923, a fusion protein comprised of the immuno-modulatory domain of histidyl tRNA synthetase fused to the FC region of a human antibody, is a selective modulator of Neuropilin-2 that downregulates the innate and a

As part of Sarcoidosis Awareness month, I wanted to tell you a personal story that happened just today, the day before World Sarcoidosis Awareness day -- in which a very good doctor had no knowledge of sarcoidosis... And how this might have an impact on my own diagnosis with a new medical problem. I'll also give you an update on how the Elimination Diet is going and lots of ways you can participate in Sarcoidosis Awareness Month! FSR's fantastic page that includes the media tool kit! https://www.stopsarcoidosis.org/awareness/ April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs. April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more! April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease. April April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR. Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health. April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents. This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative. Please keep an eye on the events calendar for updates on the time and date for this event. Stronger than Sarcoidosis: https://view.creativemail.com/v1.0/campaigns/ef228b2c-ee52-4522-a841-e38b27d00736/view FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events Nourish by Lindsey: https://www.nourishbylindsey.com/ https://www.healthline.com/nutrition/elimination-diet Meet Lindsey Norenberg https://www.nourishbylindsey.com/about Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451 Just Thrive Probiotics https://justthrivehealth.com/ More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

April is the month we all re-double our efforts to let the world know we are here. To tell the world that sarcoidosis exists, that it's a problem. That it's a disease with no known cause or cure and that it messes with our lives in often unspeakable ways. Defense number one for this disease is the Foundation for Sarcoidosis Research. In April the Foundation is pulling out all the stops to shout it from the rooftops -- and you can help! FSR VP for Research and Strategic Partnerships Tricha Shivas joins me on this episode of the Sarc Fighter Podcast to talk about the many, many events taking place in April to help spread awareness of Srcoidosis. Don't Forget April is Sarcoidosis Awareness Month! Here are some links to FSR activities! April’s Sarcoidosis Awareness Month Events April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs. April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more! April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease. April April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR. Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health. April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents. This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative. Please keep an eye on the events calendar for updates on the time and date for this event. Stronger than Sarcoidosis: https://view.creativemail.com/v1.0/campaigns/ef228b2c-ee52-4522-a841-e38b27d00736/view FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events Nourish by Lindsey: https://www.nourishbylindsey.com/ https://www.healthline.com/nutrition/elimination-diet Meet Lindsey Norenberg https://www.nourishbylindsey.com/about Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451 Just Thrive Probiotics https://justthrivehealth.com/ More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis ht

Sarc Fighter Susan Bassi was a very active outdoors person who once thought nothing of hiking 10 miles. Then Sarcoidosis raised its ugly head, and today she is trying to adjust to a life where she can no longer pursue her greatest joys. Susan is an Advocate for the Foundation for Sarcoidosis Research, helping other patients find their way through the disease. And she brings special insight to the task because she is living it. Listen in as she talks about how sarc showed up in her joints and just kept spreading. Don't Forget April is Sarcoidosis Awareness Month! Here are some links to FSR activities! April’s Sarcoidosis Awareness Month Events April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs. April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more! April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease. April April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR. Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health. April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents. This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative. Please keep an eye on the events calendar for updates on the time and date for this event. Stronger than Sarcoidosis: https://view.creativemail.com/v1.0/campaigns/ef228b2c-ee52-4522-a841-e38b27d00736/view FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events Nourish by Lindsey: https://www.nourishbylindsey.com/ https://www.healthline.com/nutrition/elimination-diet Meet Lindsey Norenberg https://www.nourishbylindsey.com/about Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451 Just Thrive Probiotics https://justthrivehealth.com/ More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

For KevinMcDevitt, sarcoidosis went from an annoyance in his golf game to a life-threatening heart condition. In Episode 30 of the Sarc Fighter podcast, Kevin tells about how things went from not so bad to awful very quickly. Yet he is fighting back and 2021 promises to be much better for him than 2020. Like many people, Kevin has fought his battle on two fronts -- with traditional medicine and an adjustment to his diet and lifestyle. In this podcast Keven shares the details of his harrowing battle with sarcoidosis and all he is doing to get his body and his life back under control. Also in this episode, I'll tell you about my attempt at the Elimination Diet. As of this recording, I am 2/3 of the way through the 3 week diet that forbids sugar, dairy and grains. Plus a bunch of other stuff. I am doing this under the guidance of Lindsey Norenberg, of Nourish by Lindsey -- whose husband, Ryan joined me on Episode 27 to talk about how he is fighting the inflammation in his body through the use of an anti-inflammatory diet as well as CBD oil. I hope you enjoy my update and continue to follow along with my progress as I slowly begin to add foods back to see what might trigger an inflammatory response! Here are links mentioned in the podcast, beginning with those from Kevin. Parasarcoisosis:: https://www.stopsarcoidosis.org/what-is-sarcoidosis/complications/ Wahls Protocol: https://terrywahls.com/ https://www.youtube.com/watch?v=KLjgBLwH3Wc Yoga Nidra: https://www.youtube.com/channel/UCE92Hzq1rGv3dGJcx6o0b3Q https://allyboothroyd.com/ Dave Asprey/Bulletproof Coffee https://www.bulletproof.com/recipes/bulletproof-diet-recipes/bulletproof-coffee-recipe/ Viome: https://my.viome.com/login Stronger than Sarcoidosis: https://view.creativemail.com/v1.0/campaigns/ef228b2c-ee52-4522-a841-e38b27d00736/view FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Background on Elimination Diet: https://www.healthline.com/nutrition/elimination-diet

In Episode 29 of the Sarc Fighter podcast, Susie Torres tells the story of how hard it was to determine what was wrong with her. Doctors mistook her illness for many other problems -- once even sending her to a psychiatric hospital. Note: I first met and interviewed Susie in early 2020 -- pre-pandemic. Susie writes that since we did the interview she has had gastric bypass surgery and lost 100 lbs! She also writes that her sarcoidosis is in remission, but she is still battling another rare disease -- possibly Sjogren’s Syndrome (SHOW-grins), which is is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth. The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus. Utah Sarcoidosis Support https://www.facebook.com/groups/2028388207424165/ Nourish by Lindsey: https://www.nourishbylindsey.com/ https://www.healthline.com/nutrition/elimination-diet Meet Lindsey Norenberg https://www.nourishbylindsey.com/about Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451 Just Thrive Probiotics https://justthrivehealth.com/ More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Andrena Johnson is fighting back by making a documentary on Sarcoidosis called Project Purple: Mission Sarcoidosis Awareness. Andrena is a a Hollywood actor and Director who is also fighting neurosarcoidosis. Frustrated by how it was impacting her career, Andrena produced a 12 minute documentary with essentially no budget. But thanks to friends in high places in the industry, she was able to get it on Prime Video where people began watching it. Before long she realized she needed to make a big time, full length documentary about sarcoidosis. In this episode of the Sarc Fighter podcast, Andrena details her own journey with sarc as well as her acting career and how she started her current documentary project. Andrena on IMDB https://www.imdb.com/name/nm4315892/bio?ref_=nm_ov_bio_sm Project Purple Facebook page https://www.facebook.com/Sarcoidawarenessfilm/ Andrena in Coffin https://www.imdb.com/title/tt1667416/fullcredits?ref_=tt_cl_sm#cast Andrena's production company on FB https://www.facebook.com/ascreativeproduction/ Surviving Sarcoidosis mini-documentary https://www.amazon.com/Surviving-Sarcoidosis-Deborah-Rice/dp/B082DR6N88 More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Ryan Norenberg is fighting cardiac sarcoidosis with a one-two punch that includes the use of CBD oil and a holistic diet. Many people who have appeared on the Sarc Fighter podcast have been frustrated by the lack of choices when it comes to treatment of their disease. There is a menu of medicines that people are familiar with ranging from prednisone to Remicade to Imuran and others. For many people, these are only marginally effective. So you ask yourself, "What if I just ate better?" or "Should I avoid certain foods?" Ryan says yes. In fact his wife is now a certified Holistic Nutritionist. In addition, Ryan has turned to a newer alternative - CBD oil. In this podcast, he explains how he uses this over-the-counter therapy to reduce inflammation. Give the podcast a listen and see if there isn't an opportunity for you to make some lifestyle adjustments, that could improve your situation. Additional notes from Ryan! Lindsey Norenberg's Website https://realmofcaring.org/ Here are a couple related to the Omega6/3 topic: https://pubmed.ncbi.nlm.nih.gov/12442909/ This is an abstract to a research document that one would need to pay for but you can get the idea of it in the abstract provided. https://www.healthline.com/nutrition/optimize-omega-6-omega-3-ratio This is a good one I found geared more towards the layman. It explains the importance while providing some specific information about different foods and sources of omega 6’s and 3’s. As it is with CBD, it is important to get fish oil from a reliable source. As it is unregulated, there is a potential of high mercury content. Additionally, it is recommended to consume in a true liquid oil form that is stored and shipped at cooled temperatures vs capsules that have been on a store or warehouse shelf for unknown time at unknown temperatures. I currently use Nordic Naturals Ultimate Omega liquid available on Amazon and shipped with a cold pack. I take 2800 mg/daily (1 teaspoon). The probiotic I take is Ther Biotic complete. This one has 12 strains of bacteria. Here are some related to cannabinoid therapy: Cannabinoids-as-novel-anti-inflammatory-drugs.pdf This one focuses more on THC than CBD specifically but provides a good overview of our endocannabinoid system and how it works. https://realmofcaring.org/roc-research/research-library/?_sft_condition_=inflammation&_sfm_publication_year=1972+2022 Here is a group related to inflammation Research Library - Realm of Caring Foundation Here is a group of research articles related to cannabinoids and their impact on immune function. https://store.healthylivingshop.com/ Here is a link to the Cleveland Clinic Healthy Living Shop. The supplements on this site have been vetted by the CC and they consider trustworthy and reliable. However, that doesn’t mean that there are not other good options out there but the buyer needs to beware. https://www.charlottesweb.com/ This is my trusted source of CBD. There are several other good ones out there as well. They offer different types (gummies, oil, lotions…) and different ratios of CBD/THC ranging from 100% CBD isolate to full plant extract containing up to the .03% federal limit on THC content. R44742.pdf Here is an article I found describing the legislation that established the hemp laws. Ryan also advises: .03% THC adds up and is not completely negligible in its effects at higher doses. The Realm of Caring can offer some support here as well. If you do decide to try CBD, I recommend you read up on the “entourage effect”. You can find some articles on the Realm of Caring Research Library page. Basically, studies are limited but there is evidence to believe that CBD is more effective in the presence of THC and other cannabinoids vs isolated by itself. Charlotte’s Web offers discounted pricing if you register with them and offers further discounts if you subscribe to recurring deliveries. I have found the subscription to be the most cost-effective way to get it.

In Episode 26 of the Sarc Fighter Podcast, Amy Cobb Describes how sarcoidosis is slowly taking over her body and to a certain extent - her life. Amy is a mother of three who works full time as a nurse practitioner. Now -- almost a year into the pandemic, she has been living with sarc, while treating patients fighting COVID-19. In this episode, Amy talks about how she's been able to handle Sarc and a cabinet full of medication while trying to continue as a soccer mom and medical professional. More on the Sarcoidosis Documentary from Mission Purple. https://www.facebook.com/Sarcoidawarenessfilm/ Atyr Pharma News Release https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-completion-enrollment-phase-1b2a-clinical More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

In Episode 25 of the Sarc Fighter podcast, patient Tracy Bawtinheimer tells the story of how sarc slowly damaged her heart until she had to make serious life changes. At one point doctors told her she had a one percent chance of survival. Yet she has found a way to prevail, even though the difficult learning curve of how to live a life after sarcoidosis. More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Frank Rivera is one of the loudest voices in the Sarcoidosis community. But COVID-19 didn't care. It hit him with a vengeance, then it came back. In Episode 24 of the Sarc Fighter Podcast, Frank talks about what doctors are calling "Long COVID" because it just doesn't go away. Despite his condition, Frank continues to work as a volunteer, helping other sarc patients. In fact, he recently formed a new outreach group called strongerthansarcoidosis.org to help make it easier for people to get answers about doctors, medications and navigating the tangles mess that is too often between sarc patients and the care they need and deserve. Stronger than Sarcoidosis https://strongerthansarcoidosis.org/ Frank's Blog https://lifeasararepatient.blog/?fbclid=IwAR0YpnPmGOgXX6GKxG9SHwetjuye8G4cJCbErhV1yxHSBPf7cLukJSg4k2o Frank on Facebook https://www.facebook.com/fjr311 Looking for previous episodes? https://www.stopsarcoidosis.org/sarc-fighter-podcast/ The Sarc Fighter Podcast is presented in part by a grant from aTyr Pharma. More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Dr. Taufiq Ahmad lives a quiet life in the UK. But slowly he felt that normal activities were wearing him out. In Episode 23 of the Sarc Fighter podcast, Dr. Ahmad tells the story of how he went from active cyclist, recreational soccer player and general outdoors enthusiast, to a man who spends a lot of time on couch. Even though he is a physician -- Sarcoidosis was not one of the causes on his radar. Ultimately, however it was determined that #sarcoidosis had badly damaged his heart. Looking for previous episodes? https://www.stopsarcoidosis.org/sarc-fighter-podcast/ The Sarc Fighter Podcast is presented in part by a grant from aTyr Pharma. More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

In this episode of the Sarc Fighter Podcast, Mary McGowan stops by to share more about herself, her extensive background in leadership for healthcare organizations, and her vision for the Foundation for Sarcoidosis Research. More about Mary and the rest of the staff at FSR https://www.stopsarcoidosis.org/about/staff/ More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Ozioma Chioma is a postdoctoral fellow at Vanderbilt University. A microbiologist, she is putting her skills to work thanks to a grant from the Foundation for Sarcoidosis Research. Ozi - as she is often called, is looking specifically for a link between hormones in women and sarcoidosis. Her preliminary findings indicate there is such a link. This could lead to a cure or at least a better treatment down the road. Dr. Chioma will talk about her research, how far they have come and what's next. More on Dr. Chioma https://medicine.vumc.org/person/ozioma-chioma-phd https://www.linkedin.com/in/oziomachioma/ Also in this podcast, I give you the rundown for the November FSR Summit that will be held virtually this year on November 14. I will be moderating a patient panel discussion that day! Hope to see you there. Whether it's self care, dealing with COVID fears, or trying to eat better -- or meeting other Sarc Fighters there are many reasons to attend. Check out the summit agenda here: https://www.eventbrite.com/e/november-virtual-sarcoidosis-patient-education-summit-tickets-109038432888 More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Cardiac Sarc Fighter Mark Landiak has had a tough run of it. One day he is feeling great, getting some fresh air with his daughter on a hike most people would never undertake. The next, he isn't sure what's wrong -- but it's not good. In Episode 20 of the Sarc Fighter Podcast, Mark talks about his struggles to get through that day and how it cot worse after that. But not to be held down, Mark has written a book on how he fought sarcoidosis and how you can too. He's also a mega-fundraiser for the Foundation for Sarcoidosis Research. Mark's Website: https://gettingbetterwithmark.com/ A quick look at Mark's story: https://gettingbetterwithmark.com/story/ Mark's Blog: https://gettingbetterwithmark.com/coping-with-sarcoidosis/ More on aTyr Pharma: https://www.atyrpharma.com/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/ Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/ Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/