We look forward to seeing you for our panel discussion! Please register for the event below. This event will be hosted live via Zoom; details confirming your registration will include access information to the Zoom webinar.
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.
Dr. Albert Freedman
Family Psychologist
Albert Freedman, PhD, is a child, adolescent, and family psychologist in independent practice. Al provides counseling support for families affected by rare diseases and complex medical conditions and serves as a consultant to rare disease advocacy groups, biopharmaceutical companies, and healthcare organizations. Al writes and speaks nationally and globally on the topic of the emotional experience of families affected by rare diseases and complex medical conditions. Al’s son, Jack, lived with Spinal Muscular Atrophy for 26 years.
Luke Hains
Home Health Aid & Sibling to loved one impacted by
Duchenne
Luke Hains is a graduate of West Chester University where he received his B.S. in Biology. Luke is a certified Home Health Aid, Duchenne muscular dystrophy (DMD) advocate and brother of Levi Hains who was diagnosed with DMD at the age of 2.
Luke’s future plans include working on a clinical trial team and to promote the rare disease community through research and development of new drugs.
Amanda McConathy
Mom and Sibling to loved ones impacted by Duchenne
Amanda is a mom to two wonderful children, Aliyah and Darren. Her son Darren has Duchenne muscular dystrophy and she also is a sibling of two brothers who had Duchenne. Born and raised in Irving, TX, Amanda was one of four children, two of which had Duchenne and passed away in 2016. She grew up in a busy household, not only did she live with her parents but her grandparents (maternal) as well. She grew up with a huge family and everyone seemed to always make their way to our home. She loves spending time with her family and enjoys cooking food of varying cuisines.
Gavriel Rosenfeld
Individual impacted by Duchenne
Gavriel Rosenfeld is a 21-year-old living with Duchenne muscular dystrophy. Born and raised in London, England, Gavriel moved with his parents and three siblings to Israel in 2020. He is a photographer, speaker, and biotech contractor and shares his journey and perspective on Instagram @gavsunscripted2022. He also continues to nurture his passion for horses that he developed as a child, visiting the stable and riding his horse almost weekly.
While living with Duchenne has complicated his life, it has also fueled his ambition. His approach is simple and straightforward – mind over matter. He refuses to let Duchenne affect his mind, mental strength or perspective and often relies on wit and humor to sustain a positive outlook. He doesn’t wait for experiences to become accessible to him – he is proactive and determined to access whatever interests him. In 2022 he completed a photography exhibition at the Biblical Zoo in Jerusalem and currently displays his works here. He also completed an internship at Solid Biosciences (Charlestown, MA), a life sciences company developing genetic medicines for neuromuscular and cardiac diseases, including Duchenne.
Cal Quitzau
Individual impacted by Duchenne
Cal Quitzau is a 21-year-old living with Duchenne muscular dystrophy. He is one out of three triplets and is the only one who has DMD. Cal manages his own medical care needs through self-advocacy and is a big believer in staying positive in order to cope with his disability. When he is not doing these things he is gaming online with his friends, working with the PAAC, building computers (with physical assistance), spending time with his family, and attends Jett Foundation’s Camp Promise-East one week out of the summer.
Ryan Russell, Ph.D.
Certified Life Coach and author
Ryan Russell, Ph.D., has a doctorate in General Psychology, a master’s in Counseling and Human Relations, is a certified life coach, and is the author of Rectify the Avenging Angel. He is an Eagle Scout, an active member of his church, and loves being an uncle. Ryan’s parents recently passed away, and he now lives independently with a caregiver who lives on his property. Ryan enjoys helping families and individuals live well with disabilities. He wants to help the younger generation excel and show that people with disabilities are just like everyone else in their thoughts and dreams.
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, a Zoom background, and facts about rare diseases and Duchenne.
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 6th Annual Rare Disease event on February 28th at 1p.m. ET!
This year, Jett Foundation will be recognizing Rare Disease Day with a presentation and panel discussion focused on anxiety and mental health in Duchenne. Moderated by Sean Baumstark and Kyle Bryant, hosts of the popular Two Disabled Dudes podcast series, our panelist will share their experiences managing anxiety and thriving through the challenges it brings while facing a rare disease as an individual, family member, or professional.
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 Links & Resources
Social Handles
Hashtags
- #RareDiseaseDay
- #ThrivingWithDuchenne
Logos
2023 Rare Disease Day Event Sponsorship Opportunities
- Premiere Rare Disease Day Sponsor | $5,000
- Rare Disease Day Sponsor | $2,500
- Advocacy Partner | $250
If you are interested in becoming a 2023 Rare Disease Day sponsor, please register online using the form above or email maura@jettfoundation.org for more information.
