Two Disabled Dudes

Carol is a badass

PR tips!

Kyle is the man.

Sean is the man.

Miracle Flights & Little Levi

048 - Rare Disease Advocate Luke Rosen, KIF1A.org

Ireland

Complaints and updates.

She is incredible.

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Nic Novicki is an actor, comedian and producer who has performed on six continents. He is founder and director of the Easterseals Disability Film Challenge which gives filmmakers – with and without disabilities – the opportunity to collaborate and tell unique stories that showcase disability in its many forms and support Easterseals’ goal to change the way the world defines and views disability, so everyone can reach his or her potential.

Les is a past recipient of the Ataxian Athlete Initiative (AAI) - curefa.org/aai

**CHECK OUT OUR NEW ONLINE STORE AT: twodisableddudes.com/shop** It's time to clean out our heads. So in this episode we cover multiple topics including Kyle's recent interview on the Know Ataxia Podcast (https://apple.co/2HTFWy7), clinical trials, goals for the year (including today's release of our NEW ONLINE STORE! twodisableddudes.com/shop), #DontForgetTheCrew dontforgetthecrew.com), and Friedreich's ataxia awareness. It's a lot in only 40 min. Enjoy!

We are joined in this episode by Arash Bayatmakou, author of the new memoir Little Big Steps. Arash talks to us about his sudden transition to the world of disability, after a spinal injury when he was 30 years old left him nearly paralyzed. He was shocked to discover that medical treatment of spinal injuries hadn’t changed in twenty years. Rather than succumb to the paradigm that the medical field sentenced him to, Arash decided to fight for hope. He defines acceptance as the ability to cope with your life in the present moment, but not being complacent and nodding along when you are told what to expect in the future. “Be okay with ambiguity.” -Arash Arash started a nonprofit called No Limits Collaborative, which seeks to help people with spinal disorders pursue activities that they didn’t think was possible. If you are in the area, please join Arash on Sunday, May 6, 2018, at 7pm, at the Blue Stockings bookstore in New York City for a book signing. Tell him The Dudes sent you. Check out Arash Bayatmakou’s website at arashrecovery.com for more info on him, his book, and his nonprofit. The first three of you, our listeners, to email us at [email protected] with the subject line either “Team Sean” or “Team Kyle” will receive a link to download the audio copy of Arash’s book FOR FREE. We’ll let you know which team wins.

Aimee Lyons of CrossFit KOP

Surviving & Thriving with an Invisible Chronic Illness.

Q & A sessions following a screening of The Ataxian at RDW in Washington, DC.

With Kara Eichelkraut

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DCO

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Interview featuring Jake & Matt.

We began this project a year ago, hoping to give a voice to those who choose their own attitudes in the face of challenges that life serves up. So here we are, 30+ episodes later, and the 2 Dudes have come to realize how the podcast is kept alive and strong by the group of people it brings together! In this, our one year anniversary episode, we focus on the fact that the podcast is held up by you as a listener. And you are the reason why we can’t wait to continue this next year! In this episode, we interview four of our listeners from different areas of the country: Dan Parker-King; Heidi Behr, Nygel Lenz, Tyler Porter, and Mary Nadon Scott. We ask our guests for their favorite moments and interviews from the show-what keeps them coming back, and we have a few flashbac

One of our past favorites as we prepare the 1yr anniversary episode!

“It’s a wonderful life; it’s just a different life.” We interview Paul Avery, CEO of World of Beer; former COO of the parent company of Outback Steakhouse, father of two daughters diagnosed with FA; and a member of the board of directors at FARA. The transition from being in the business of running successful restaurants to becoming forefront in the research and treatment of a rare disease was a sudden and unexpected change: but not a shift Paul hesitated to make. For him, his love for and concern of the well-being of his daughters, diagnosed with FA, made his decision to join the research and development of a treatment of FA a natural fit. And in Paul’s willingness lies a lesson for all of us. We ourselves may not have a background in medicine, biology, or genetics. We may get overwhelmed at becoming part of whatever team is calling to us. Paul was able to use his economic and negotiating skills to become a powerful voice in FARA. Not to mention the unbelievable benefits Outback Steakhouse and other companies under his authority have provided at FARA events. What is your calling in life? Could the fact that your background seems unrelated to that be not a weakness, but a strength? We want to thank Paul Avery for reminding us that strength and accomplish comes from everyone bringing their diverse skills to the table.

Kyle & Sean's progress on their 30-day challenges.

This Episode features Kyle & Sean facilitating a panel of three others living with FA, Kate (14), Michael (17) and Jean (54). This live recording took place in Tampa, Florida in September 2017, leading up to the FARA Energy Ball.

In this episode, we get back to the basics. No guest, just the 2 Dudes hanging out and talking about a topic very important to us: self-discipline. Living with a disability is often frustrating. Maybe that’s an understatement. When so many normal daily activities are impossible, or at least difficult, to do independently, we are tempted to develop a victim’s mindset. But that’s not who we are, and that’s not who you are. The key to unlocking your own greatness is self-discipline. Sean has a great way of visualizing self-discipline. He imagines that our ideal self asks us if doing whatever we are doing at the moment, helps us advance to where we want to be. An example he uses is if we want to look great for the summer, will eating whatever we’re going to eat or skipping the next workout or going to the gym right now help us get there? Kyle talks about a great book he recently read called Living with a SEAL. In it, an ordinary man trains with a Navy SEAL for a month, after seeing the SEAL compete in an ultra-marathon. In the harsh cold of winter, the book details the grueling training sessions, mixed in with a lot of laughs. The book serves as a perfect example of what it looks like to behave according to self-discipline. There are many areas that both of us want to be better in - so as we get close to the one-year anniversary, we invite you to join us in trying to better ourselves! The first thing we are doing is comprising a list of 5 things each. These are the 5 most important lessons we’ve learned in life. We want to hear yours too! So reach out to us at [email protected]. We look forward to hearing your lessons! We’re also starting the 2DD Push-up Challenge. We (Kyle and Sean) are going to do 100 push-ups everyday for a month. Keep track of our progress here: http://twodisableddudes.com/2dd-challenges/. And feel free to join us! We’re also going to be logging what we eat for the next 30 days. Join us or track our progress here: http://twodisableddudes.com/2dd-challenges/ Self-discipline is all about making your future self proud of the actions you are taking now. So, no time for excuses. Be the best version of yourself right now!

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Tom Hamilton spent 25 years on Wall Street and when his daughter was diagnosed with Friedreich's ataxia (FA), he started using all his knowledge and expertise to fight Rare Disease. Tom is on the Board of Directors for the Friedreich's Ataxia Research Alliance (FARA), he is a founding Board Member for Chondrial Therapeutics, he is Executive Producer of The Ataxian, and co-founder of the CureFA Foundation.

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Dan Gottlieb is a practicing psychologist and therapist with more than 40 years of experience. Best known as the host of "Voices in the Family," a weekly radio program heard for more than 30 years on WHYY-FM, Philadelphia’s NPR affiliate. Dan recently retired from the weekly radio program, and now produces and hosts six specials each year. Dr. Gotlieb suffered a spinal cord injury at the age of 33 and he joins us to talk about how disability has touched his life and how we can all work to be better human beings.

rideATAXIA Europe - Le Peloton de l'Espoir was a 450 mile ride from Strasbourg, France to Lyon, France during July 1-8, 2017. There were 20 riders from the US and 30 riders from France. The purpose of the ride was to bring together the French and US FA communities as one united FA community, moving to the finish line together. Join us as Sean "interviews" Kyle about the ride.

Join us for a discussion about rare disease patient engagement recorded LIVE at Horizon Pharma.

In college, his friends called him The Beast. But then he got mysteriously sick and was on the brink of death 5 different times, stumping specialists. Diagnosed with Castleman Disease, Dr David Fajgenbaum earned his MD and started research on himself. He formed the Castleman Disease Collaborative Network (CDCN) to speed the progress toward a cure for himself and the entire Castleman Disease Community.

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Sports Illustrated calls Roger Crawford one of the most accomplished physically challenged athletes in the world.

Leading up to the 8th Annual Ride Ataxia NorCal (2017), Kyle Bryant was interviewed on KHTK Sports 1140 to promote the bike ride, The Ataxian and spread awareness of Friedreichs Ataxia!

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You've heard us talk about our 4-man Team, and 13-member Crew. In this episode, we chat with the other two cyclists from TeamFARA RAAM; John Lockwood and Mike Mellott. John & Mike have both been involved and supportive of many adventures throughout the years and they are always fun to reconnect with. As you'll hear, since competing in RAAM 2010, both of these dudes have married and started families of their own. In this episode you'll enjoy feedback and personal perspectives on why each of these guys joined the team, how they managed to get through some difficult scenarios while on the race, a few favorite memories, and hear about some embarrassing moments you are welcome to make fun of!

We never know what we are truly capable of until we find ourselves in a tough situation, when success is the only option. Kyle's Dad, Mike Bryant joins us to talk about Team FARA in Race Across America and what it took to get the team safely across the country in "The World's Toughest Bike Race." And Kyle tells a short story about being held hostage by a cat.

In this episode, Kyle & Sean talk about how building community has helped them and how it could help YOU. “No man is an island…,” as John Donne reminds us. Growing up with a rare disease is, almost by definition, lonely. Faced with physical limitations that most of our neighbors don’t have to face many times makes us feel odd. With ataxia, we go through issues with balance that make us seem awkward and clumsy; but all people with disabilities face some kind of uncommon limitation, whether its using our arms or leg, trouble hearing, speaking, or seeing, facing mental issues or any other symptom of a disability. The unfortunate result is that many of us with disabilities feel odd. However, the truth is that people dealing with disabilities are not alone. It’s important for everyone - disabled or not - to be a part of a community, but it’s even more important for people who feel isolated to find support and understanding from those facing similar challenges as them.

“To hear from and learn from people who are in the same position...there’s nothing that compares to it.” A lot of our focus lately has been of Friedreich’s ataxia or FA - the disease that both of us share. And that shouldn’t be a big surprise. FA has had a huge impact on us - it has forced us to see life in a different way and adapt. We have each had friends that have helped shape that impact. One of those friends is Matt Fritsch. Matt has a spinal cord injury and in this episode he joins us for a conversation about how community is essential for all of us no matter what disability we have. “[Being disabled] is an exclusive club that no one joins on purpose...the parking is a right, not a privilege.” Matt gives a few tips about navigating life with a disability. One of his most fundamental points is that we cannot do it on our own; that even though doctors, nurses, therapists, and surgeons gave him the same advice, he didn’t pay much attention to what they said, until it was told to him by someone within the spinal-cord injury community. The need of community for those with disabilities is great. It’s easy to ignore the well-meaning advice and help from others, but when it comes from someone with the same challenges that you are facing - the advice suddenly seems much more important. This applies both within the SCI and FA communities, and among all those facing the challenge of disability.

As promised, here is the second half of our interview with Ron Bartek, president and cofounder of the Friedreich’s Ataxia Research Alliance, or FARA. Please note that the audio quality is less than ideal, but still definitely enjoyable. Along with Ron’s very impressive resume, we found out that he learned to sleep standing up in Army Ranger School. Ron discovered much of what the body could do when deprived of normal physical needs like sleep and food. Ron shares about the experience of his son Keith’s diagnosis with Friedreich’s ataxia at nine-years-old. A counselor who noticed Keith’s problems with balance and coordination recommended that Keith go to a neurologist for a check-up. At that appointment few months later, Ron and his wife Raychel were told that Keith had Friedreich’s ataxia (FA), a condition they’d never heard of and couldn’t even spell. When they asked what they could do about this diagnosis, the neurologist gave a grim answer - nothing. To Ron and Raychel that was not an acceptable answer so they began researching FA on their home computer. They learned about all the symptoms of the disorder, and all of their research was very disheartening. However there was one piece of good news - the year prior (this was in 1997), scientists discovered the specific gene that caused FA. Ron and Raychel believed that since the gene was identified, it would be much easier to find a treatment or a cure, but that there was no organization that specifically researched FA. They decided they would change that. Ron, Raychel, 5 other parents of children with FA, 1 adult patient, and 3 scientists submitted paperwork to the District of Columbia to initiate FARA and become its first board of directors. One of FARA’s first actions was the submittal of a proposal to the NIH for the first scientific conference on Friedreich’s ataxia. Four months later, the grant was funded by the NIH, and six months later, that conference was held for people allover the world to attend. Important to note is at that first conference, no drug company wanted to attend (because it’s too rare, they said) and no clinical trials for FA was ever done. Today, multiple drug companies are aligned with FARA. And they are hopeful for a cure. The source of FARA’s success can be summed up in one word: collaboration. Knowing that FA exists as a rare genetic anomaly is a boring statistic, but meeting FA patients, seeing their strengths and weaknesses, getting to know them - helps to bring out the humanity of those who live with FA.That humanity is central to what FARA is, and who Ron is. Whether he is partnering with a group of scientists and drug companies or following the two stripes on the soldier’s hat in front of him, Ron Bartek recognizes that our strength is found in our ability to collaborate with others.

The idea for the Ataxian Athlete Initiative (AAI) adaptive cycling equipment grant program came when Kyle received a grant from the Challenged Athletes Foundation, which he used to purchase a Catrike recumbent trike. That purchase changed his life: while on it, he didn’t feel as physically limited as he felt most times. Realizing how impactful that grant was for him, he created a grant specifically for people with FA, to purchase adaptive cycling equipment, which is often times cost prohibitive for someone with a disability. Since 2009, the Ataxian Athlete Initiative has provided 32 individuals with adaptive cycling equipment. The application for 2017 is available now until May 1; any person with ataxia can apply by clicking “Apply for an AAI Grant” at curefa.org/aai, giving information on the applicant and what kind of equipment would work for them. Please remember that this is a competitive application process and funds are limited. Some tips to consider when applying to the AAI: Try out various adaptive equipment. Sit in different equipment. Take a spin. Determine what is most fitting and most comfortable for you. Be honest. Tell us how you, individually, would benefit from receiving funds from the AAI, and what impact it would have on your life. Be unique. Make your application far above general - make it personal. Speak from the heart. And remember to focus on what you can and will do. And don’t forget that even those who don’t receive full or partial funding from the AAI will receive tips on how to make their application stand out more for other equipment grant programs or for the AAI again in the future. Some of the links we talked about in this episode: Ataxian Athlete Initiative: http://curefa.org/aai Kyle’s blog post on getting started with your search for adaptive cycling equipment: http://www.curefa.org/rideataxia-blog/a-guide-to-beginning-search-for Challenged Athletes Foundation grant program, Access For Athletes: http://www.challengedathletes.org/programs/grants/

We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance, or FARA. Since both of us have FA, this organization and Ron himself are special to us. In a word, Ron is a peacemaker. Kyle starts off by reading Ron’s long and impressive bio.. Of special note to Ron is that he was able to be a part of the negotiation team for the Intermediate-Range Nuclear Forces (INF) Treaty between The United States and The Soviet Union. As a school kid, Ron dreamed of being able to know enough about global superpowers that he would be able to help orchestrate peace between the US and the Soviet Union. After an impressive military career, he was a part of the INF Treaty, which helped put an end to the Cold War. Shortly after that treaty was signed, Ron’s son was diagnosed with the rare disorder Friedreich’s ataxia (FA). Suddenly the world of the rare disease community opened up to him, and he decided to use his ample peacemaking skills in the fight against FA.

Interview with NORD

For our second interview before Rare Disease Day (Feb 28), we chat with Max Bronstein, Chief Advocacy and Science Policy Officer at The Everylife Foundation for Rare Diseases. The goal of the Foundation is to help advance innovation in the rare disease community; to advance knowledge and methods of support for those with a rare disease, and to ultimately look towards developing and enabling access to treatments or cures. Max is a scientist at heart; he has been published in Nature and The New England Journal of Medicine which makes him a great ally in raising awareness of rare diseases. He uses his background in his job at The Everylife Foundation in two big ways. One way that he uses his science background is what he calls regulatory issues. He does this by continuously holding meetings with large health and biotech and pharma partners. He speaks directly to the doctors and scientists at the forefront of cutting edge research in health and medicine and reminds them of the reality of rare diseases, a field often overlooked or forgotten. Another way that Max is a voice for those in the rare disease community is by working in social policy issues. This is when Max sets up meetings with politicians so that the rare disease community is represented. This involves dialoguing with senators and representatives on Capitol Hill whenever drug costs, talks of healthcare, or any other issue related to the rare disease community arises, and also just to meet with them regularly to remind them of the reality of rare diseases. He regularly goes to both the White House and Congress. Max explains these to us and walks us through a big success that The Everylife Foundation and other organizations helped push through instituted: the 21st Century Cures Act. Keep in touch with The Everylife Foundation to keep up with all of their diverse efforts and find out how you can get involved! Visit their website at http://everylifefoundation.org/, follow them on Facebook: https://www.facebook.com/EveryLife4RareDiseases/, and Twitter: @EveryLifeOrg.

Nicole Boice