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The latest news from PTC

  1. Lila Plakolli: Empowering others to embrace who they are

    Lila is a disability activist and performer living with Duchenne. Through their dynamic theatre performances and powerful advocacy speeches encouraging self-pride and self-expression, Lila is empowering others to accept and embrace who they are. Lila’s childhood began in Kosovo, but they moved to Switzerland as a child, where they were diagnosed with Duchenne muscular dystrophy…
    Rare Disease Community
    December 20, 2022
    reading time 2 minutes
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  2. Adam Peska: Boccia Paralympic gold medalist from Czech Republic

    Adam Peska is an athlete from Czechia who won gold in Boccia at the 2020 Summer Paralympics in Tokyo. He is the second person ever with Duchenne Muscular Dystrophy to win a gold medal in any event at the Paralympics. He has also won the Best Male Debut athlete at the 2021 Paralympic Sport Awards,…
    Rare Disease Community
    October 24, 2022
    reading time 3 minutes
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  3. Lukas Fischer supporting people with Duchenne to live self-determined lives

    The Mathilde Escher Foundation was founded in 1865 and provides specialized housing, training, work, and leisure opportunities for people with muscle-wasting diseases in Zurich, Switzerland. Lukas Fischer is the Head of Communications and Head of the Graphic design workshop at the foundation. He is committed to the foundation’s goal of supporting people with Duchenne, and…
    Rare Disease Community
    October 6, 2022
    reading time 2 minutes
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  4. Benjamin James – Living with Duchenne means you CAN live the life you want

    Benjamin James has a first-class honors Neuroscience degree; he is also a patient advocate and a healthcare communications consultant. When he was four years old, Benjamin was diagnosed with Duchenne, which was managed in his younger years with steroid treatment, exercise and a good physiotherapy routine. As he reached his teenage years, Benjamin began attending…
    Rare Disease Community
    September 13, 2022
    reading time 2 minutes
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  5. Daniel: Writer, Director and Producer

    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…
    Rare Disease Community
    July 22, 2022
    reading time 2 minutes
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  6. Caregiver of the Year in UK CAN-paigning for disability and rare disease rights

    Shelley Simmonds is a mother and carer who has used her personal experiences to campaign for better resources and care for those in the Duchenne, rare disease and disability communities. As a mother of two from Essex in the UK, Shelley experienced the effects of Duchenne firsthand when her son, Fraser, was diagnosed with the…
    Rare Disease Community
    June 17, 2022
    reading time 3 minutes
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  7. Feriel CAN inspire other women with Duchenne

    Feriel Chebba is a 30-year-old woman who is living with Duchenne in France. Diagnosed at 6 years old following a muscle biopsy, Ferial has used a wheelchair since she was 11 years old. But her diagnosis hasn’t stopped her from having a positive outlook and living in the moment. After primary school, Feriel attended college…
    Rare Disease Community
    June 8, 2022
    reading time 2 minutes
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  8. Philip Jönsson’s Journey to Gold

    Philip Jönsson is the reigning Paralympic gold medalist in the mixed 10m air rifle standing event and the first person ever with Duchenne to win a gold medal in any event at the Paralympics. We asked him how he prepared for Tokyo 2020, and about his plans to defend his title. How and when did…
    Rare Disease Community
    May 24, 2022
    reading time 3 minutes
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  9. Lizanne Schreur: Aspiring screen writer living with Duchenne

    Lizanne Schreur is a 22-year-old Digital Television Production student based in London. She was born and raised in Netherlands where she grew up in a big family with three older brothers. At three years old, Lizanne was diagnosed with Duchenne. The occurrence of Duchenne is very rare among females and often manifests differently than it…
    Rare Disease Community
    May 13, 2022
    reading time 2 minutes
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  10. Gabriela CAN inspire children to embrace their differences

    Meet Gabriela, young and talented author of a children’s book called Timothy’s Magic Wheelchair. The book is all about a young man by the name of Timothy who never really liked his wheelchair and what it stood for. So much so, that he wasn’t sad or upset when it broke down. However, this all changed…
    Rare Disease Community
    April 11, 2022
    reading time 1 minute
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