HARPOON RARE DISEASE
Captain Joe Dion, Dion Foundation's co-founder, will be featured on Discovery Channel's "Harpoon Hunters" shares his family's fight against Limb-Girdle Muscular Dystrophy (LGMD) after the diagnosis of two of his children, and the foundation's mission to find a cure for this debilitating disease as they fund the first-ever clinical trial this year. "Harpoon Hunters" drops anchor January 24th, 2025, Fridays at 9PM EST.
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“I WILL GO TO THE ENDS OF THE EARTH FOR MY KIDS. LEARNING THERE WASN’T A TREATMENT FOR THIS DEVASTATING MUSCLE WASTING DISEASE, WE DECIDED WE NEEDED TO CHANGE THAT. AFTER TWO YEARS OF FUNDRAISING AND FIGHTING FOR A CURE: THE DION FOUNDATION IS FUNDING THE FIRST-EVER CLINICAL TRIAL FOR LGMD IN THE U.S. WE HOPE THAT SOMEDAY CHILDREN LIKE PETER AND MAGGIE WON’T HAVE TO SUFFER. ”
Joe Dion is the co-founder of The Dion Foundation, a non-profit organization dedicated to raising awareness and funding research for rare and ultra-rare genetic diseases affecting children, with a focus on Limb-Girdle Muscular Dystrophy (LGMD2C). Established in 2023, The Dion Foundation was born out of Joe’s personal journey as the father of two children, Peter 12, and Maggie 8, recently diagnosed with LGMD2C. Driven by the mission to find a cure, Joe and his wife, Courtney, established the foundation with a clear objective: to fund research and accelerate the development of potential treatments and cures. Read about Peter & Maggie here.
Joe dedicates his time to the Dion Foundation, facilitating successful fundraising, collaborating with world leaders in the neuromuscular space to facilitate treatment development, and advocating for rare disease amongst the community, stakeholders and legislative offices.
The Dion Foundation is funding the first-ever in-human clinical trial for a gene therapy treatment in the U.S. for Limb-Girdle Muscular Dystrophy 2C (LGMD2C). READ MORE.
HOW CAN I HELP?
Our mission at the Dion Foundation is simple: raise awareness and find a treatment for these cruel and debilitating diseases affecting children. Every day with a muscle wasting disease, is muscle lost, and loss of function.
Get involved: Follow us on social: like, share and comment to help spread awareness for these ultra-rare pediatric diseases.
Follow us on: Instagram, X, Facebook, or LinkedIn.
Donate today: DONATE. Every dollar allocated to research, treatment developments, clinical trials, and learning more about these diseases brings us closer to giving children diagnosed with these diseases a chance of survival. Every child matters, and every child should have the opportunity to grow up. Every donation through the Dion Foundation is funding the first-ever clinical trial, and will support research in the future to expand these therapies to other genetic diseases. Your generous contribution today will help put an end to LGMD 2C!
WHAT IS LIMB-GIRDLE MUSCULAR DYSTROPHY?
Limb-girdle muscular dystrophy (LGMD) is a group of inherited neuromuscular diseases with at least 34 variants, or subtypes, that all cause progressive muscle weakness.
Muscular dystrophy refers to a class of diseases that involves weakness and deterioration of muscles, causing loss of ambulation, movement, and eventually affecting the heart and lungs.
The 4th most common muscular dystrophy – LGMDs collectively affect an estimated 1.63 per 100,000 (both male and female) globally.
LGMD is caused by genetic mutations in genes responsible for proteins critical to muscle function, regulation, and repair. Inherited in an autosomal recessive nature - LGMD can affect both male and female equally.
Of the 34 LGMD subtypes, less than 5 subtypes have a treatment being tested in clinical trials currently world-wide, demonstrating a tremendous unmet need for research and development for these ultra-rare diseases. READ MORE ABOUT LGMD 2C HERE.
WHAT DOES IT TAKE TO FUND A CLINICAL TRIAL?
The Dion Foundation has partnered with Atamyo Therapeutics to launch a U.S. site for a clinical trial for a gene therapy treatment for LGMD2C. Read more here.
Through the deployment of Atamyo Therapeutics’ U.S. clinical trial site for LGMD 2C, children in the U.S. like Peter and Maggie, will have the chance to have access to a life-saving treatment.
The Dion Foundation’s partnership to expand this trial involved over $1,000,000 in financial support.
Every dollar to fund this clinical trial, has been raised through the foundation with the incredible support of our community. Dion Foundation supporters have a tangible outcome from their contributions.
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