Sarc Fighter: Living with Sarcoidosis and other rare diseases

April is Sarcoidosis Awareness month, and that's something to sing about. And walk about. And talk about. And so much more. In this podcast, I'll be speaking with Tricha Shivas, Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, and Kate Anistasia, Director of Global Patient Programs. They have a whole menu of options that will excite you when it comes to way to celebrate and participate in Sarcoidosis Awareness month -- including a brief sing-along with the Sarc Fighter theme song, Zombie. This is gonna be fun. So listen in and prepare to get moving to make people See Sarcoidosis. Show notes Go to the FSR home page for info on Sarcoidosis Awareness Month. https://www.stopsarcoidosis.org/ Die Laughing: www.dielaughing.org Support Royce: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc How to take the Veterans survey: Log in to your FSR-SARC Patient Registry account. Go to your Dashboard or Surveys/Studies tab. Look for the Military Veterans Survey and click “Start” to begin. Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey. https://www.stopsarcoidosis.org/patient-registry/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #particulatematter

Dan Keota lives outside Philadelphia. He needs a double lung transplant. It's serious. But Dan is one of those people who find comedy just about anywhere -- even in the darkest throws of his own condition. Listen as Dan tells the story of how he is turning to humor while he hopes a lung donor becomes available. Be sure to listen at the end to hear his first on-stage comedy routine! Show Notes Die Laughing: www.dielaughing.org Support Royce: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc How to take the Veterans survey: Log in to your FSR-SARC Patient Registry account. Go to your Dashboard or Surveys/Studies tab. Look for the Military Veterans Survey and click “Start” to begin. Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey. https://www.stopsarcoidosis.org/patient-registry/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #particulatematter

Once you receive a diagnosis of Sarcoidosis, you have an answer. But that raises more questions. What medications should I take? Will they work? Is it the right medication? What complications could I face? Do I have the right doctor, or is the right doctor not in my local area? In many cases sarcoidosis means you need to travel to get the care you need. Your local doctors may not have enough experience to deal with your case. That was the situation for Royce Robertson. He spent tens of thousands of dollars just getting to and from his care. That's before he paid for traditional medical expenses. In this episode of the FSR Sarc Fighter podcast, Royce talks about raising money to help people offset the cost of travel. Show Notes Support Royce: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc How to take the Veterans survey: Log in to your FSR-SARC Patient Registry account. Go to your Dashboard or Surveys/Studies tab. Look for the Military Veterans Survey and click “Start” to begin. Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey. https://www.stopsarcoidosis.org/patient-registry/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #particulatematter

Sarah Bishop has a little extra compared to the rest of us. Even though she endures daily struggles with Sarcoidosis she pushes herself to the limit. In this case the limit is an endurance event called The Goat, which takes place in her native New Zealand. Sarah turned her expedition into a fundraiser for the Foundation for Sarcoidosis Research, and it gained national notoriety and momentum. In this episode of the FSR Sarc Fighter podcast, Sarah describes the grueling training and how sarcoidosis makes everything just that much more difficult. Show Notes Sarah's Facebook Page https://www.facebook.com/groups/1171838998236662/posts/1171929584894270/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #particulatematter

The Foundation for Sarcoidosis Research (FSR) is gaining national traction in the fight against sarcoidosis—championing research funding, patient rights, and access to treatment. In this episode, we dive into how FSR is helping patients receive the care they deserve while empowering the research community to develop new sarcoidosis treatments, therapies, and clinical breakthroughs. We also explore how the Foundation protects and advocates for patients who choose to participate in sarcoidosis clinical trials. From advocacy to innovation, learn how the Foundation for Sarcoidosis Research is shaping the future of sarcoidosis care. Listen in as FSR CEO Mary McGowan shares the news of a big award for the Foundation. Show Notes Watch the Reveal Video for the Voice of the Patient Award: https://22731230.hs-sites.com/rare-disease-week-rva?ecid=ACsprvuh4hPVM-EpuV6h1LCQIIVcgakGq3L3ldFCfwDvvoWpm8_lTO4p5cCXzrvQH09E0wNjpA6q&utm_campaign=2024 Rare Disease Week Obituary Elaine Carlin: https://www.millerplonkafuneralhome.com/obituary/ElaineEPratt-Carlin Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong! https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/ If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link: https://www.stopsarcoidosis.org/fsr-gsca-community-groups/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #particulatematter

Janet Mockovciak has been through the wringer. Her sarcoidosis has gone from bad to worse. She has tried all the medications that most patients have used, but they only seem to last for a brief period of time. Then they stop. In the meantime, the sarcoidosis spreads throughout her system. Despite that, she manages to walk two miles every day, and recently went skiing with an oxygen tank on her back! Listen as Janet describes all she has been through -- with the takeaway being that she is still working to have the life that she wants and deserves. Show Notes Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong! https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/ If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link: https://www.stopsarcoidosis.org/fsr-gsca-community-groups/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #particulatematter

Dr. Mark Mallozzi at National Jewish Health in Denver is examining the airborne particles or "particulate matter" that may play a role in triggering sarcoidosis. In this episode of the FSR Sarc Fighter Podcast, Dr. Mallozzi details some of the things in the air that we have no idea we are breathing. He looks at the evidence from the dust at 9-11, to burn pits for veterans to smoke from wildfires -- places where cases of sarcoidosis tend to spike. Show Notes More on Dr. Mark Mallozzi: https://www.stopsarcoidosis.org/fsr-and-ats-announce-dr-mark-mallozzi-as-the-new-partner-grant-awardee/ Donate link https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025/Donate Voice of the Patient Report https://www.stopsarcoidosis.org/wp-content/uploads/FSR_2025_VoiceOfPatient_Report_R05_Digital.pdf FSR 10 Year Registry Report https://www.stopsarcoidosis.org/registry-report YouTube Video - Cycling in Belgium and and Netherlands: https://www.youtube.com/watch?v=ytJBORBx9Gs MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #particulatematter

Here at the end of 2025, it's time to measure our progress in the fight against Sarcoidosis -- and the news is good. In this episode of the FSR Sarc Fighter Podcast, Tricha Shivas, the Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, joins me to talk about huge strides in research funding, building the support community, Veterans' support, and even progress with lawmakers in Washington, D.C. In short, this is a good time to be a sarc patient -- as more and more progress is being made and even more is coming in 2026. Show Notes Donate link https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025/Donate Voice of the Patient Report https://www.stopsarcoidosis.org/wp-content/uploads/FSR_2025_VoiceOfPatient_Report_R05_Digital.pdf FSR 10 Year Registry Report https://www.stopsarcoidosis.org/registry-report YouTube Video - Cycling in Belgium and and Netherlands: https://www.youtube.com/watch?v=ytJBORBx9Gs MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #fmla #fmlaclarification #metformin

A new study out of India shows a bit of crossover between sarcoidosis and lung cancer. In this episode of the FSR Sarc Fighter podcast, I'll take a look at the study and what it reveals — including a new drug, Metformin, previously used to treat Type 2 Diabetes, that may show promise based on the study's findings. For what it's worth, I'll also share the terrors of surgery for my ruptured Achilles. Show Notes: Donate to FSR: https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025 FSR Biomarker Summit: https://www.stopsarcoidosis.org/fsr-convenes-global-leaders-for-landmark-clinic-alliance-meeting-and-sarcoidosis-biomarker-summit/ Sarcoidosis News Study from India: https://sarcoidosisnews.com/news/new-genetic-clues-connect-sarcoidosis-lung-cancer-risk More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #fmla #fmlaclarification #metformin

Basim Karim is a fighter. He's battled HIV for more than two decades, has had COVID five times, and now has Sarcoidosis in multiple parts of his body. Doctors face a special problem with him because he cannot allow his immune system to be too depressed, or he faces consequences even greater than sarcoidosis. Basim joins me to tell his story. Show Notes Basim's Reddit thread: https://www.reddit.com/r/NewToSarcoidosis/s/pmNebor2Ve Sarcoidosis News Ohio State Study: https://sarcoidosisnews.com/news/sarcoidosis-get-referral-lungs-soon-diagnosis Sarcoidosis News - Repurposing Drugs: https://sarcoidosisnews.com/news/repurposing-drugs-improves-survival-sarcoidosis-patients-study/ Dr. Thomas Leung: https://www.thomasleunglab.org/ Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/ SHRM: https://www.shrm.org/ FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/ More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #fmla #fmlaclarification

What if the cause and a potential cure for sarcoidosis were hidden in plain view -- on your skin? According to research by Dr. Thomad Leung in Philadelphia, that might be the case. In this episode of the FSR Sarc Fighter podcast, Dr. Leung explains how his team of researchers is using the skin to investigate how the body sends a homing signal to cells that create damaging granulomas in any part of the body, including the lungs, heart, and nervous system. Listen in as Dr. Leung describes breaking down cells and looking for a potential biomarker that could lead to sarcoidosis being diagnosed with a blood test. Show Notes Dr. Thomas Leung: https://www.thomasleunglab.org/ Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/ SHRM: https://www.shrm.org/ FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/ More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #fmla #fmlaclarification

We've talked about a lot of different ways sarcoidosis can affect the body. But this is the first time we've talked to a patient who has hypercalcemia -- where there is too much calcium in the blood. And yes, it can be caused by sarcoidosis. It's a story Chris Cermak is living with, even though his blood calcium reached dangerously high levels. Show notes: More from the FSR Gala: https://www.stopsarcoidosis.org/25-gala/ Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/ SHRM: https://www.shrm.org/ FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/ More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #fmla #fmlaclarification

A lot of people find the podcast because they are trying to figure out what's going on in their bodies. They know they have sarcoidosis, but they don't know what it is, how serious it is, or whether it will get worse or maybe - go away. Then there's the question of multi-organ involvement. How common is it and which organs are most often impacted? In this episode of the FSR Sarc Fighter podcast, a look at a new report from Sarcoidosis News that takes a deep dive on many of those questions. Also -- I had a rough visit with my new doctor at my local hospital, and I'm thinking about finding a new doctor. Should I? You decide. Feeling good on my mountain bike! Show notes: Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/ SHRM: https://www.shrm.org/ FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/ More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #fmla #fmlaclarification

It's not always easy to participate in a clinical trial. Even if you want to, how do you get the time off from work? Starting in 2025, thanks to the Foundation for Sarcoidosis Research, there is a provision called the FMLA Clarification, which essentially states that you can participate without fear of losing your job. In this episode of the FSR Sarc Fighter Podcast, Dr. Ennis James, a sarcoidosis researcher and physician at the Medical University of South Carolina, and Tricha Shivas, Chief of Staff and Strategy at FSR join me to talk about how difficult life can be for patients. Dr. James shares a real-life story about a woman who fought to stay in a trial after problems arose at work. SHOW NOTES OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/ SHRM: https://www.shrm.org/ FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/ More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness #fmla #fmlaclarification

Let's say you or a family member wants to participate in a clinical trial, but the boss doesn't want you to have the time off because of extra visits to the doctor's office. Under new rules spearheaded by the Foundation for Sarcoidosis Research, companies must now allow patients time away from the job without fear of losing their employment. In this special edition of the FSR Sarc Fighter Podcast, FSR CEO Mary McGowan joins me, along with Emily Dickens, Chief of Staff, Head of Government Affairs, and Corporate Secretary for Society for Human Resources Management. Together they will walk us through the new guidelines for HR departments when it comes to allowing employees to participate in clinical trials. @SHRM #SHRM #humanresources #clinicaltrial Show Notes SHRM: https://www.shrm.org/ FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/ More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness

In this episode of the FSR Sarc Fighter Podcast, it's time to think. Borrowing some thoughts from a man who faced a possibly fatal brain condition, I look at how similar his case is to our own -- bearing in mind that he expresses his case so much better than most people can or could. Also, Sarcoidosis News is out with a study showing that Black Women are more likely to develop kidney stones than other groups. Show Notes Eric Markowitz's Essay: https://bigthinkmedia.substack.com/p/what-brain-surgery-taught-me-about The Big Think https://substack.com/@bigthinkmedia Black Women and Kidney Stones https://sarcoidosisnews.com/news/sarcoidosis-increases-risk-kidney-stones-black-women-us/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness

Scarlette Washlock was diagnosed with sarcoidosis when she was just 12 years old. Her mother, Kelly McBride, had to raise her daughter with all the anguish and uncertainties that come with Sarcoidosis, compounded by Scarlett's youth and her desire to stay active at school. Together they succeeded. Scarlette had a good high school experience and joins me on the podcast from her new freshman digs at Ohio State University, where she hopes a pre-med path is the one she can take. Listen in as Scarlette and her mom discuss their journey as they took on sarcoidosis. Show Notes Scarlette's Essays: https://www.stopsarcoidosis.org/diagnosed-at-12-sarcoidosis/ Pediatric Sarcoidosis: How My Skin Was Affected 12-18 Years Old - Future of Personal Health Sarcoidosis News Story on Ocular Sarc: https://sarcoidosisnews.com/news/tailored-progressive-treatment-urged-ocular-sarcoidosis-study MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness

Cathleen Terrano has sarcoidosis. It's in her kidneys. In her heart. In her lungs. On her spinal cord. Other places too. And yet she has danced with some famous people and keeps on dancing and teaching dance to people who might otherwise miss out on life's precious moments -- like a father-daughter dance at a wedding. Cathleen rocks bright purple hair so people will ask her about it -- and open a pathway to talk about sarcoidosis. In this episode of the FSR Sarc fighter podcast hear Cathleen's story. Also an update on FSR's recent awards to young researchers and a big think about how a simple pencil can be a model for us all! Show Notes Links to Cathleen's many activities: https://www.youtube.com/watch?v=dwXGeOoXOJU https://www.facebook.com/p/Roll-Call-Wheelchair-Dance-LI-100057573214676/ https://www.newsday.com/.../new-york-emmys-2024-img8jzdl https://www.facebook.com/photo?fbid=832500922012341&set=a.526379722624464 https://www.facebook.com/cathleen.terrano/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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 #sarcoidosisawareness