World Duchenne Awareness Day is on Sept. 7. In honor of this year’s theme, “raise your voice for Duchenne”, we are highlighting remarkable individuals in the Duchenne community who are doing just that: using their voices to raise awareness of Duchenne, advocating for those living with the condition and inspiring the community to join them in amplifying their voices.
Read on to learn more about their incredible efforts to support the Duchenne community and raise their voices for Duchenne.
Jessica
Jessica uses her platform and titles, including Mrs. NY International, to advocate for Duchenne. Her story with Duchenne started in 2004, when she learned that her younger cousin, Tommy, was diagnosed with Duchenne and that she was a Duchenne carrier.
Felix
Felix channels his passion and studies to changing the workplace for people with disabilities. He was four when he was diagnosed with Duchenne. During his time at school, Felix saw how Duchenne affected him, and how inclusive people could, or could not, be.
Darrel
Darrel, a young man living with Duchenne, creates and posts videos on his YouTube channel about lifestyle and sports, which he says has always been a dream of his. Ahead of the FIPFA World Cup in 2023, Darrel interviewed his friend Tyler about his 20-year career in powerchair football, including playing for USPSA – United States Power Soccer Association, the impact it has had on his life and his current involvement in the sport. During the World Cup, Darrel also shared match highlights and his favorite moments.
Hulda
Hulda is a mother of three, caregiver and Duchenne advocate from Iceland. Her life was transformed when her youngest son was diagnosed with Duchenne. To encourage positivity through hard times, Hulda created Dancing for Duchenne.
Shalom
Shalom is a writer, advocate and artist with Duchenne. He views Duchenne as a companion and source of inner strength and uses his platform to be a voice not only for people with Duchenne, but also for people with disabilities who are neurodivergent or facing mental health challenges.
Lizanne
Lizanne is an aspiring screenwriter living with Duchenne. She aspires to increase recognition for disabled people in the acting and film industries.
Get Inspired
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