February 28, 2026
Save the date for Jett Foundation’s 2026 Rare Disease Day event:
Advocating for Care Needs in Duchenne & Beyond Panel Discussion
February 19, 2026 | 5:30 PM ET | Via Zoom
Join us for a powerful panel discussion featuring Jett Foundation community members living with Duchenne and other neuromuscular disorders. They will share their essential experiences and provide actionable advice for self-advocacy across all areas of care in the rare disease journey.
This year’s panel discussion will take place during Rare Disease Month on February 19, 2026, with additional awareness opportunities planned for Rare Disease Day on February 28.
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.
Ashley is 25 years old living with Spinal Muscular Atrophy (SMA). She was born and raised in SoCal and currently lives in San Diego. Ashley holds a degree in Psychology from UC San Diego, and a Master’s in Sports Psychology from California Baptist University. Currently, she is working at Rady Children’s Hospital as a mental health care coordinator. While she enjoys her work, her goal is to work the LA28 Paralympic’s as mental performance consultant.
Charley Seckler is an early-career health marketing and PR professional with experience at Porter Novelli and Rare Disease Research, LLC. Living with Duchenne muscular dystrophy, he brings a personal, patient-focused perspective to rare disease storytelling and shares honest reflections in his blog, The Wheel Deal, and when he is not writing, he is probably watching the Knicks and sipping coffee on the Upper East Side.
Xavier is 21 years old and lives in Tucson, Arizona. He was born with limb-girdle muscular dystrophy and is currently a senior at the University of Arizona studying Mechanical Engineering, with a minor in Materials Science and Engineering. He is working on an engineering project with a well-known mining company and is employed as a math, engineering, and physics tutor for the university’s athletic department. When he can, Xavier enjoys playing poker and exploring good food.
Jake is 23-years-old living with Duchenne muscular dystrophy and graduated from Wheaton College Massachusetts in May of 2025 with a Bachelor of Arts degree in film and news media studies. Jake has published two children’s books, One Wants to be a Letter and The Dilly-Dally Parrot. He is currently working on screenplays and hopes to one day write and direct in the film and TV industry. Despite having Duchenne, Jake’s mission has been to touch people’s lives in a positive way and has lived a fulfilling life. He’s appeared on local news stations, keynotes, and is an advocate for those living with rare disease. Jake’s motto is “Don’t live the diagnosis, live the life.”
Please email Maura Carroll at [email protected] with any questions or to learn more about sponsorship opportunities.
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 included shareable graphics and facts about rare diseases and Duchenne.
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 a graphic:
I am attending Jett Foundation’s Annual Rare Disease event on February 19th at 5:30PM ET!
This year, Jett Foundation will be recognizing Rare Disease Day with a panel discussion on February 19th highlighting members of our community who are thriving through adaptive experiences and adaptive living.. Moderated by Sean Baumstark and Kyle Bryant, hosts of the popular Two Disabled Dudes podcast series, our panelist will share their experiences and how to be limitless with your interests. Join in by registering at jettfoundation.org/rare-disease-day!
Facebook Profile Frame
Change your Facebook profile photo in honor of Rare Disease Day! Use our Canva template to customize the frame with your personal photo.
How to use the template:
Click below to add your company’s logo, download, and share Rare Disease Day sponsorship graphics to show your support of Jett Foundation’s awareness day event in February!
Sample social media post to pair with sponsor graphic:
I am attending Jett Foundation’s Annual Rare Disease event on February 19th at 5:30PM ET!
This year, Jett Foundation will be recognizing Rare Disease Day with a panel discussion on February 19th highlighting members of our community who are thriving through adaptive experiences and adaptive living.. Moderated by Sean Baumstark and Kyle Bryant, hosts of the popular Two Disabled Dudes podcast series, our panelist will share their experiences and how to be limitless with your interests. Join in by registering at jettfoundation.org/rare-disease-day!
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.
300 million people worldwide are living with a rare disease.
Equity for people living with a rare disease is equitable access to diagnosis, treatment, health, social care and opportunity.
Rare disease currently affect 5% of the worldwide population.
72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes or are rare cancers.
70% of genetic rare diseases start in childhood.
There are approximately 15,000 individuals living with Duchenne in the USA.
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.
52% of Camp Promise participants are ineligible to join other camp experiences due to age restrictions at other camps.
Accessible equipment, like accessible vehicles, are often not covered by health insurance, making critical items financially out of reach for many families.
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.
Duchenne still has no cure. But, there is so much hope. Research and advocacy work have helped increase treatment options and show promising results.
Please email Maura Carroll at [email protected] with any questions or to learn more about sponsorship opportunities.
Advocacy Sponsors:
Over the weekend of September 6-7, 2025, Jett Foundation’s community came together both in-person and virtually for an unforgettable World Duchenne Awareness Day (WDAD) weekend
Panelists and moderators shared their experiences with adaptive living, encouraging others to be limitless with their interests.
Awareness boxes, in-person luncheon, virtual panel discussion, and so much more!
Individuals from the Duchenne and rare disease community shared on obtaining their license, experiencing great thrills, starting careers, and more.
Panel discussions, accessible and adaptation demonstrations, a luminaria ceremony, and more!
Jett Foundation’s Thriving with Duchenne Rare Disease Day event focused on anxiety and mental health
On September 7, 2022, Jett Foundation hosted its seventh annual World Duchenne Awareness Day (WDAD) celebration to recognize those in the Duchenne community.
On February 28, 2022, Jett Foundation hosted a virtual event to celebrate Rare Disease Day 2022. This was Jett Foundation’s 5th annual Rare Disease Day, which welcomed speakers from the Duchenne and rare disease communities in a panel discussion themed “Thriving with Duchenne.”
For the past several years, Jett Foundation has hosted an annual World Duchenne Awareness Day (WDAD) event of celebration and remembrance in the Boston area, the epicenter for rare disease research. Once again we were able to take the opportunity to broaden our celebration beyond our traditional Boston area event and engage with our families and partners all across the country virtually.
Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!
Your gift helps Jett Foundation provide programming and opportunities, such as Camp Promise, to many families impacted by Duchenne muscular dystrophy each year.
