Sean Baumstark and Kyle Bryant
Hosts of Two Disabled Dudes Podcast
Sean and Kyle will be modering our Breaking Barriers Panel Discussion at 12PM ET on September 7. 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.
Ellen Stitzer Gonzalez
Adaptive Demonstrations
Ellen is a mother of two and grandmother to one boy who has Duchenne muscular dystrophy. Ellen is an alum of the Culinary Institute of America in New York and owned a restaurant in Houston, TX for over 30 years cooking Cajun Creole food. She decided to move to Dallas, TX at the beginning of 2023 to help care for her grandson. Ellen loves to read and go to the beach. Her family feels very blessed to have her support.
Sophia Flynn
Adaptive Demonstrations
Sophia is a single mother to her 16-year-old son who was diagnosed with Duchenne at 6 years old. Her life goal is to make sure that he is loved and supported through this life they didn’t expect. She says, “Jett Foundation was one of the first places I started with through their Porch Nites and have really enjoyed the community. I feel that being an ambassador is something in that really suits me. I have always been someone who enjoys helping others and giving them the support they need. I look forward to connecting more to our Duchenne community and learning from all of you and being a support for those who need it.”
Julie Wells
Adaptive Demonstrations
Julie Wells earned her undergraduate degree in psychology from the University of Central Florida in Orlando and her Master of Science degree in occupational therapy from Virginia Commonwealth University in Richmond in 2000. She presently serves as Occupational Therapist at Nemours Children’s Hospital in Orlando, which she joined in 2015. Julie has over 10 years of experience in Multidisciplinary Neuromuscular Clinic care. In the Neuromuscular Clinic at NCH, she evaluates fine motor skills, self-care skills, physical performance testing, feeding skills, and needs for skilled therapy services in the community. Julie is also involved in Neuromuscular research for patients with CMT, Duchenne Muscular Dystrophy, and SMA. She is an active member of the American Occupational Therapy Association, Rehabilitation and Engineering Society of North America, International Association of Pediatric Feeding and Swallowing, and the Neuro-Developmental Treatment Association.
Trina Stelly
Breaking Barriers Panel Discussion
Trina was born and raised in a small, rural town in South Louisiana. Two of her three children are impacted by Duchenne. Trina brings a unique perspective to her new position as a mom and caregiver, but also as a patient having been diagnosed as a manifesting carrier/female with dystrophinopathy. As Jett Foundation’s Resource Specialist for Females in Duchenne, Trina will is responsible for managing Jett Foundation’s relationships with females impacted by Duchenne in the community. Her role assists in connecting women with resources and support as well as coordinating programs and events focused for this demographic within our Duchenne community.
Anthony DeVergillo
Breaking Barriers Panel Discussion
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 many who live with a rare disease to be fully included in society.
Ken Nieviera
Breaking Barriers Panel Discussion
Ken Nieviera grew up in Taunton, MA, and has lived in Berkley, MA for the past 36 years. He served in the Navy and after being discharged, worked as a hospital carpenter for 44 years until retiring about 9 years ago. He and his wife, Kelley, have been married for 37 years and have a son, Jake (32), who has Duchenne muscular dystrophy. They also have a 42-year-old son, Dave. Ken’s hobbies include woodworking, bike riding on the Cape Cod Canal, and spending time with family and friends.
Naz Dastgir (RegenxBio)
Breaking Barriers Panel Discussion
Jahannaz Dastgir, DO is a pediatric neuromuscular specialist and the clinical development lead of the RGX-202 program at Regenxbio. This program focuses on AAV8 gene therapy for Duchenne Muscular Dystrophy.
