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STRIVE: República Duchenne

August 29, 2022

  1. STRIVE: República Duchenne

    Due to medical advances and evolving disease management, people with Duchenne are now living longer than before. This new reality creates new opportunities for independence and aspirations, previously unthinkable for those living with the disease and their families. Whether that education, sport, work or simply having more autonomy over their day to day lives. But…

  2. STRIVE: Structuring the Clinic for Basic Care at ASCADIM

    ASCADIM provides physical, psychological, and social care to people with muscular dystrophies in Southern Brazil. The organization was created based on insights from parents on the despair they felt following diagnosis and their desire for more trusted information. Via ASCADIM, patients and their families can access vital support, guidance, and free physical therapy – crucial…

  3. Creating My VIBE: My Voice is Inspirational, Brave and Empowering

    At its core, PTC’s Patient Engagement team is deeply committed to understanding the patient experience. The team knows firsthand the importance of making direct connections and building relationships with people in the rare disease community. Working closely with patients, caregivers and patient advocacy groups, their goal is to offer support, connection, and resources that address…

  4. Meet the Swiss National Team for the 2022 IWAS Wheelchair Hockey World Cup

    Powerchair hockey is a team sport played by athletes who require the use of an electric wheelchair in their day-to-day lives. Athletes have disabilities ranging from Muscular Dystrophy or SMA, to cerebral palsy or severe spinal cord injuries. Learn More about the 2022 IWAS Powerchair Hockey World Cup Meet the Swiss National Team

  5. “On the playing field I am an athlete instead of a wheelchair user”

    ”Your child is severely physically disabled” – after giving this kind of diagnosis, physicians are faced with an important task: to give desperate parents some perspective. Impossible? Not at all! Because even with a severe disability, so much is possible – sometimes even a world championship title. Let yourself be inspired. Sport at the highest…

  6. IWAS Powerchair Hockey Game Schedule

    Powerchair hockey is a team sport played by athletes who require the use of an electric wheelchair in their day-to-day lives. Athletes have disabilities ranging from Muscular Dystrophy or SMA, to cerebral palsy or severe spinal cord injuries. Learn More about the 2022 IWAS Powerchair Hockey World Cup

  7. PTC Italy supports “SPORT AND DISABILITY… FROM DREAM… TO REALITY!”

    This July, PTC Italy was proud to support an event designed to give families and children with muscular and neuromuscular disabilities the opportunity to learn about wheelchair sport and especially try different types of sports that are accessible to all. The event, titled ”SPORT AND DISABILITY… FROM DREAM… TO REALITY!” was held on 2nd July…

  8. Daniel CAN write, direct, and produce films

    Daniel Castro is a 23-year-old filmmaker from Florida and a recent graduate at Miami Dade College where he studied Film, Television and Digital Production. His family has been Daniel’s biggest supporters, especially his dad Jose. At age 5 Daniel was pre-diagnosed with Duchenne Muscular Dystrophy (DMD). Jose discovered research about the newly available gene sequencing…

  9. Jon Rey-Hastie: Pushing the limits of Duchenne

    Jon Rey-Hastie is a 41-year-old man living with Duchenne in the UK. Looking at his life achievements, he exemplifies what people with Duchenne CAN achieve. Jon is the Co-founder of Pathfinders Neuromuscular Alliance, has a Ph.D. in Government, and lives independently with his husband. An academic overachiever, Jon completed his Ph.D. in Government at the…

  10. Supporting the 2022 IWAS Powerchair Hockey World Cup!

    At PTC Therapeutics, we continue to be inspired by the communities we serve. We are proud to be sponsoring this year’s IWAS Powerchair Hockey World Cup, which is taking place from the 9th – 14th August 2022, in Switzerland. The IWAS Powerchair Hockey World Cup is the most important international competition for powerchair hockey athletes.…