The latest news from PTC

Emily is a contributing writer. Her brother Wil has Duchenne muscular dystrophy. He was always noticed on the field when growing up; that is, for all the “wrong” reasons. Other kids could outrun him, outjump him, and outperform him. And yet, despite his physical weaknesses, he was also noticed for the “right” reasons. His heart…

Tiffany knows first-hand the impact Duchenne muscular dystrophy has on an affected individual and their family members. After Tiffany’s son, Wil, was diagnosed with a rare form of Duchenne, she immersed herself in helping others navigate their Duchenne journeys through her work at CureDuchenne, a non-profit organization. Using her experience as a qualified speech-language pathologist…

What has Benni been up to lately? Benni’s #DuchenneCan story featured in March 2021 made a lasting impact on others in the community. His mission to protect the environment and wildlife has continued to grow, and he has made further progress in his quest to create a better world for humans and animals alike. Committed…

With the ongoing coronavirus pandemic keeping us physically apart, the Healing Goodwill Foundation – Duchenne Hungary began to find new ways to connect with their local Duchenne community and continue to provide valuable support. By strengthening its virtual presence, the Foundation has been able to stay in contact with affected patients and their families through…

Christopher, founder of the charity Mitchell’s Journey and father of Mitchell, lives in the US. After his son, Mitchell, passed away due to complications from Duchenne muscular dystrophy in 2013, Christopher decided to channel his grief into helping other families experiencing the challenge of receiving a Duchenne diagnosis. Christopher understood that he could play a…

Despite being the 12th largest country in the world, Saudi Arabia lacks experienced physicians and medical centers that specialize in the diagnosis and treatment of certain rare diseases. Access is especially challenging in remote areas of the country, leading to inaccurate or delayed diagnosis of patients suffering from neuromuscular disorders, including Duchenne muscular dystrophy. Using…

Marharyta lives in Ukraine with her 13-year-old son, Danya, who was diagnosed with Duchenne muscular dystrophy seven years ago. But she’s not your typical caregiver! Over the past few years, Marharyta has worked tirelessly to improve her son’s life and raise awareness of Duchenne in her local community. Marharyta understood the key role that education…

Björn, from Sweden, doesn’t let his Duchenne muscular dystrophy diagnosis stop him from making a difference and empowering others like him. Independence has always been a focus for Björn, now age 32. With the support of his government-funded (LSS) personal assistant, Björn is living independently and working as an advisor for the Swedish Research Foundation…