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Lessons Learned from My Sibling with Duchenne – #DuchenneCan

April 9, 2021

  1. Lessons Learned from My Sibling with Duchenne – #DuchenneCan

    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…

  2. Striving to Change Perceptions – #DuchenneCan

    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…

  3. Benni CAN Save the Orangutans – #DuchenneCan

    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…

  4. PTC to Celebrate Rare Disease Day 2021

    Every year, the rare disease community comes together to mark their collective journey with a day for recognition, sharing and reflection on the last day of February, Rare Disease Day. PTC is honored to observe this awareness day in unity with our rare disease community patients, caregivers and advocacy partners. Our SVP, Corporate & Patient…

  5. Keeping Community Connections Strong – #DuchenneCan in Hungary

    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…

  6. Supporting Families Affected by Duchenne – #DuchenneCan

    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…

  7. Your Story Is Rare – It’s Powerful, Too

    A rare disease diagnosis comes with no instructions, no how-to book and certainly no guidance on how to manage life in a world that has suddenly been turned upside down. The greatest advice on rare disease comes from those who are living with it: The patients and caregivers who know, first-hand, what it means to…

  8. Duchenne Diagnosis and Timely Care in Saudi Arabia – #DuchenneCan

    “We were determined to support physicians who are at the forefront of Duchenne diagnosis and fulfill our mission of giving families the special moments they deserve.” – Edouard and Patricio, PTC MEA Team Despite being the 12th largest country in the world, Saudi Arabia lacks experienced physicians and medical centers that specialize in the diagnosis…

  9. Making Education Possible in Ukraine – #DuchenneCan

    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…

  10. Breaking Down Physical and Digital Barriers – #DuchenneCan

    Björn, from Sweden, doesn’t let his Duchenne muscular dystrophy diagnosis stop him from making a difference and empowering others like him. “Accessibility goes beyond a ramp or a lift. I’m proud to be contributing to decision-making to improve accessibility for those living with disabilities in my community. I hope to empower and inspire others in…