The latest news from PTC

Hulda Svansdóttir is a mother of three, caregiver and Duchenne advocate from Iceland. Hulda’s life was transformed when her youngest son, Ægir, was diagnosed with Duchenne when he was four and a half years old. However, despite knowing little about the disease, when Hulda found out her son may be eligible for treatment, she was…

Laura McLinn is a mother, caregiver and advocate from Indianapolis, IN, USA. When her son was diagnosed with Duchenne at 3-years-old their lives shattered; they had never heard of Duchenne and suddenly could no longer see their son’s future. However, the McLinn family no longer mourns the life that Jordan could’ve had but now embrace…

Guðjón is from Iceland and is living with Duchenne. As an academically focused young man, he was always top of the class whilst studying for a degree in pharmacology at the University of Iceland. However, he realized that he could use his scientific talent and everyday experience of living with Duchenne to help support advances…

Andrea from Sicily, Italy is an inspiring young man living with Duchenne muscular dystrophy. He knows that being optimistic and believing in oneself are fundamental to overcoming challenges and achieving great things in life. His story is proof that people with DuchenneCan dare to be bold and make the most out of life. Andrea is…

Elijah, from California, refuses to let Duchenne muscular dystrophy define him and his future. When Elijah was only 15 years-old, he founded Destroy Duchenne, a non-profit organization that aims to ”complete the cure” for Duchenne by advancing gene-editing and gene therapy technologies into human practice. His driving force is to not only bring hope to…

Aida and her husband founded the Lebanese Association for Neuromuscular Diseases (L.A.N.D.) in 2011, following their son Wafik’s diagnosis with Duchenne muscular dystrophy. At that time, they encountered a lack of information and support for their family and others living with neuromuscular diseases in Lebanon. They realized there was a need for a community organization…

What has Sebastien been up to? JULY 2023: A DuchenneCan Update: Since launching Handiscover in 2015, an online platform for accessible travel, Sebastien has been determined to improve accessibility and the day-to-day lives of millions of people who live with a disability. This idea came to life in 2020 when Sebastien launched the Handiscover Accessibility…

In the United Arab Emirates (UAE), people with special needs and disabilities are considered ”people of determination.” This designation is used in recognition of their achievements in different fields. Abdulla – who is 37 years old and living with Duchenne in the UAE – is one such incredible person who demonstrates determination in all parts…

Pedro is from Campo Grande, Brazil and is living with Duchenne muscular dystrophy (DMD). He has many passions and interests that keep him energetic and happy. His love of writing has led him to a career in journalism, and he has even published two poetry books. Singing and composing are core passions and he has…

Patrick – a.k.a. “Tick” – from São Paulo, Brazil, loves music and enjoys performing on stage. He is also living with Duchenne muscular dystrophy – but that does not define him. Instead, Tick is defined by his personality and his dreams. Watch the video to learn about Tick and how he is making his dreams…