DBT40 Honoree: Rob DeMasi

Photo By Luigi Ciuffetelli

Age: 27
Title: Founder and President
Workplace: Muscle Movement Foundation

If not for an unfortunate misdiagnosis in high school, Rob DeMasi may have never founded the Muscle Movement Foundation (MMF). In 2012, DeMasi founded the nonprofit organization with the goal of providing physical, financial and emotional accommodations to families affected by neuromuscular disease. Shortly before that time, he was an accomplished athlete at St. Mark’s High School, all while battling myasthenia gravis. The autoimmune disease causes extreme muscle fatigue, weakness and paralysis, but DeMasi took a proactive response. He started a blog about helping families deal with the disease, which laid the groundwork for his nonprofit. He envisions MMF chapters in a numberof states over the next 10 years.

When he’s not on the road promoting myasthenia gravis research, DeMasi has served as a behavioral interventionist, language facilitator, administrative support staff and head wrestling coach at Henry B. du Pont Middle School. He helped facilitate former Gov. Jack Markell’s World Language Expansion Initiative classes. He also serves as wrestling coach at H.B. du Pont, leading the team to a 33-0 streak over three years as Red Clay Consolidated School District Conference Champions.

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