US FDA Grants Expanded Approval of ELEVIDYS Gene Therapy for DMD Patients Ages 4 and Above

My Powerful Story Campaign

At MDA we recognize the power of story to create connection, inspire self-advocacy and build understanding for what it’s like to live with neuromuscular disease. In a unique campaign, members of the neuromuscular disease community submitted their own personal stories, and we partnered with artists to animate them and bring them to life.

Jonathan Lengel

Jonathan Lengel has been in love with performing since he was in kindergarten. Theater, singing, piano, and improv help Jonathan overcome any limitations he has encountered from living with neuromuscular disease. Follow along with Jonathan’s story to learn how his love of the performing arts has brought him new experiences, joy, and empowerment. Jonathan has served as an MDA Ambassador, attended MDA Summer Camp, and lives with congenital muscular dystrophy.

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Brittany Sharp

Brittany Sharp’s neuromuscular disease made it difficult to participate in many different activities until her doctor at MDA Care Center introduced her to MDA Summer Camp. Follow her journey as she goes from being nervous and afraid to being welcomed by the MDA Summer Camp Community, having brand-new experiences, meeting her best friend, and finding a new confidence and perspective on life that extended beyond her week at camp.

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Tana Zwart

Tana Zwart was a very active child and aspired to become an athlete. However, at a young age, she was diagnosed with facioscapulohumeral muscular dystrophy (FSHD). Her parents never underestimated her and gave her space to adapt to the challenges she faced. Her story shows her changing perspective from seeing her wheelchair as a symbol of losing her fight against FSHD to seeing her wheelchair, and her FSHD, as something special and empowering that helps her as she chases her dreams. Tana is a former MDA National Ambassador.

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Suzanne Rood

Suzanne woke up nervous. She was attending a conference she was excited about but there would be many people in attendance—strangers as well as many familiar faces. Normally she would be excited but for the first time, Suzanne was attending the conference in her wheelchair. Her fears quickly fade as her friends, acquaintances, and colleagues all warmly greet her and treated her just the same as they always had. Suzanne lives with Charcot Marie Tooth disease.

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