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Martin Stengård: Making Esports Champions with DuchenneCan mindset

February 2, 2023
  1. Martin Stengård: Making Esports Champions with DuchenneCan mindset

    Martin Stengård has many strings to his bow. Following his pursuit of music as a student and retraining in the software development industry, he is now working as a full-time cyber security specialist. Above all this, however, he is the proud father of Sigge, his 15-year-old son who is living with Duchenne muscular dystrophy. For…

  2. 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…

  3. Take on Duchenne Podcast: Women & Duchenne

    We are dedicating this episode to ‘Women & Duchenne’ in honor of World Duchenne Awareness Day which takes place every September 7. Tune in to hear from three incredible women: a clinical expert, a mother who is also a carrier and caregiver, and a scientist share their knowledge, perspectives and experiences. Each has a set…

  4. National Family Caregivers Month: Thank You, Caregivers

    National Family Caregivers Month (NFCM), which takes place each November, is a time to recognize and express gratitude for the more than 50 million Americans who provide care and medical assistance to their loved ones, including parents, children and siblings. We’d like to take this time to thank caregivers in the U.S. for their selfless…

  5. PTC is a Finalist in Two Pharma Industry Awards in Ireland

    PTC was thrilled to be shortlisted as a finalist in the Pharma Industry Awards in two categories, Biotech Company of the Year and Supply Chain Achievement Award, alongside remarkable companies and organizations in Ireland’s pharma industry. The Pharma Industry Awards recognize and celebrate the most original and innovative individuals and companies that demonstrate excellence in…

  6. An innovative supply chain model for an innovative product

    In July 2022, PTC’s first gene therapy and disease-modifying treatment for Aromatic l‐amino acid decarboxylase (AADC) deficiency was approved by the European Commission (EC). In this relatively new field of molecular medicine, PTC is one of the pioneers in the gene therapy, being the first therapy to be injected directly into the brain. Unlike the…

  7. Preparing Europe for a new generation of innovative therapies

    Thomas Bols, Head of Government Affairs and Patient Advocacy, EMEA and APAC at PTC, recently shared his perspective with Open Access Government on how preparing Europe for a new generation of innovative therapies has the potential to transform the lives of patients. Gene therapies are bringing hope to patients living with ultra-rare diseases. In the…

  8. 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,…

  9. Honoring AADC Deficiency Awareness Day 2022

    For the third year, PTC will commemorate AADC Deficiency Awareness Day on Sunday, Oct. 23. This groundbreaking event was established in 2020 and spearheaded by AADC deficiency caregiver and founder of the AADC Family Network, Kelly Heger. The official designation of AADC Deficiency Awareness Day has enabled parents and caregivers, patient advocacy groups, legislators and…

  10. 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…