The latest news from PTC

Powerchair Hockey is a team sport for people with physical disabilities who require a wheelchair to practice sport. The game is fast paced and intense…with two teams of five players battling against each other to score the most goals and win! The game prides itself on being very inclusive, with a team comprised of varying…

In this episode with Dr. Linda Cripe, we learn more about cardiomyopathy associated with Duchenne Muscular Dystrophy (DMD). We discuss care consideration and management strategies especially pertinent for manifesting DMD carriers and why screening and monitoring is so important. What more could be done to support carrier moms? Listen to the podcast to learn more.…

Claudia is a mother of two, caregiver, social media content creator and Duchenne advocate from the Dominican Republic, living in New York. Originally a lawyer by trade, Claudia spent a happy, but demanding, few years raising her family whilst simultaneously juggling work commitments. However, this all came to a sudden halt when Claudia noticed that…

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…

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…

For PTC, 2022 was a milestone-reaching, patient-supporting, award-winning, employee-engaging, community-driven year. It was also another year of many firsts. The first approved disease-modifying treatment for AADC deficiency, and the first marketed gene therapy directly infused into the brain, was approved in Europe and the UK. We also had the first global regulatory approval for treatment…

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…

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…

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,…

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…