Sean Baumstark and Kyle Bryant
Hosts of Two Disabled Dudes Podcast
Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities.
However, both dudes have completed several long-distance bike rides including “The World’s Toughest Bike Race” – Race Across America (RAAM). Their RAAM journey is the subject of an award-winning documentary called The Ataxian.
Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.
Together Sean and Kyle host the podcast series, Two Disabled Dudes. Their guests include leaders in the Rare Disease community, Paralympic athletes, notable Psychologists and accomplished public speakers and authors. This podcast is about setting sights beyond the challenges in life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster and practical thoughts that apply to many areas of life with this podcast.
Leslie Crowley
Entrepreneur
Leslie Crowley is an East-Atlanta 27-year-old entrepreneur. He graduated in 2012 and from there went on to pursue rapping and music production. Today he is the proud owner of J0K3 Music LLC & JokeCBD, where he operates and creates all on his own! Music has always been his passion and he is proud to be a music producer.
Anthony DeVergillo
Communications Professional & Rare Disease Advocate
Anthony DeVergillo is a motivated communication professional with a focus in the rare disease space. He lives with Duchenne muscular dystrophy, a disease that weakens his muscles over time, but he never lets it stop him from advocating for every person with a rare disease to be fully included in society.
Anthony is currently concentrating his energy on the social barriers that the pandemic has brought into the public view, such as the need for a virtual option for every in-person event and increased video game accessibility. That is why the Jett Foundation and Camp Promise missions hit so close to home for Anthony – he has been striving for years to find a community that goes beyond just health and disease.
After graduating from Rutgers University, Anthony struggled to find a career due to the discrimination behind closed doors that companies utilize against people with disabilities and people in wheelchairs. Amicus Therapeutics was the first to provide him an opportunity to use his abilities as the Internal Digital Communications Associate partnering with employees to unify brand, people, and message.
Elijah Stacy
Author, Entrepreneur, and Public Speaker
Elijah J. Stacy is 20 years old and he is an Author, Entrepreneur, Public Speaker, and a deep thinker.
With ambitious goals to change the world he founded the 501(c) (3) nonprofit Destroy Duchenne, which he started at the age of fifteen. He is determined to advance gene editing and gene therapy to save his life, his brother’s life, and the lives of thousands of people around the globe who have been diagnosed with Duchenne.
He regularly accepts public speaking engagements and interviews, sharing his story with organizations, companies, and students worldwide.
Guðjón Reykdal Óskarsson
Pharmaceutical Scientist
Guðjón Reykdal Óskarsson is 30 years old living with Duchenne muscular dystrophy (DMD) in Iceland. He was not diagnosed with DMD until the age of 7 and his family jokes about it saying it is his father‘s profession to blame… that children of medical doctors do not get the same sympathy when feeling sick. Ever since he was a kid, Guðjón has been curious about everything from nature and science to people and his surroundings.
During his university years studying pharmacology, his interest in DMD grew. He started to attend the annual Action Duchenne conference held in the UK and went every year from 2012-2018 to learn about the newest therapies, ongoing clinical trials, and promising therapies.
In 2016, he was invited to a workshop held by the European neuromuscular center (ENMC) called “AAV Microdystrophin gene therapy for DMD.” He then planned his own master‘s project in pharmacology where he had a cell lineage created from his own skin cells. Guðjón had his whole genome sequenced and designed, in theory, a personalized gene therapy using Crispr-cas9 gene-editing system to correct the DMD gene. His team then tried to apply one of those methods to the cell lineage derived from his own cells.
After getting his Master‘s degree, Guðjón received his PhD in genetics and on October 15th, 2021, he defended his PhD thesis on rare mutations affecting blood traits in humans. Two months after he defended his thesis, Guðjón went into cardiac arrest and luckily survived. He is currently recovering and figuring out what his next step will be. As he works to figure out the next part of his journey, he is enrolled in an applied ethics course at his local university to keep busy.
Thank you for supporting Jett Foundation on Rare Disease Day! These tools and resources will help you spread the word in your local community about Rare Disease Day, Duchenne, and Jett Foundation. Below we have shared our mission, logos, social media platforms, and hashtags. We have also included some sample language to use when speaking about Jett Foundation’s Rare Disease Day event and Rare Disease Day.
Shareable Graphics
Click below to download and share rare disease and Duchenne statistic graphics as you drum up excitement and awareness for Rare Disease Day amongst your family, friends, and colleagues.
Sample social media post to pair with the graphic:
I am attending Jett Foundation’s 5th Annual Rare Disease event on February 28th at 1p.m. ET!
This year, Jett Foundation is recognizing this special day with a panel of speakers sharing personal experiences about how they are thriving with Duchenne. Moderated by Sean Baumstark and Kyle Bryant, hosts of the popular Two Disabled Dudes podcase series, our panelist will bring their unique stories to the table while sharing real-life scenarios, situations, and perspectives.
Don’t forget! Feburary 11 is the last day to register to receive a special Rare Disease Day gift and event folder in the mail. Register now at https://www.jettfoundation.org/rare-disease-day-registration.
Duchenne & Rare Disease Day Statistical Graphics
Zoom Background
About Duchenne
Duchenne (pronounced dü-shen) muscular dystrophy (DMD) is the most common fatal pediatric disorder. Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and ultimately, premature death. Children with Duchenne are born seemingly healthy and decline over time, typically losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties. Duchenne has no cure.
Rare Disease Fast Facts
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300 million people worldwide are living with a rare disease.
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Equity for people living with a rare disease is equitable access to diagnosis, treatment, health, social care and opportunity.
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Rare disease currently affect 5% of the worldwide population.
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72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes or are rare cancers.
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70% of genetic rare diseases start in childhood.
Duchenne Fast Facts
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There are approximately 15,000 individuals living with Duchenne in the USA.
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2,000 individuals and families impacted by Duchenne and other neuromuscular disorders turn to Jett Foundation annually for knowledge, support, and friendship through programs like Camp Promise, Jett Giving Fund, Educational Workshops and Webinars, Family Support Groups, and more.
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52% of Camp Promise participants are ineligible to join other camp experiences due to age restrictions at other camps.
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Accessible equipment, like accessible vehicles, are often not covered by health insurance, making critical items financially out of reach for many families.
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Duchenne impacts the whole family. Parents, siblings, relatives, and friends often don’t get the support they need to navigate a diagnosis alongside their loved one.
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Duchenne still has no cure. But, there is so much hope. Research and advocacy work have helped increase treatment options and show promising results.
Jett Foundation’s Mission
Jett Foundation empowers people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educational opportunities, and ongoing support for every stage of a Duchenne journey.
Jett’s Links & Resources
Jett Foundation’s Social Handles
Jett Foundation’s Hashtags
- #StrongerThanDuchenne
- #Duchenne
- #RareDiseaseDay
- #ThrivingWithDuchenne
Jett Foundation’s Logos
