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Dingell, Kelly Introduce Resolution Honoring World FSHD Day

Representatives Debbie Dingell (D-MI) and Mike Kelly (R-PA) this week introduced a bipartisan resolution honoring June 20, 2024, as World Facioscapulohumeral Muscular Dystrophy (FSHD) Day. FSHD is a genetic neuromuscular disease that leads to the weakening of skeletal muscles that affects more than 40,000 Americans.
“There is a critical need for investments in research and development to advance treatments for FSHD. There are still many cases of FSHD with unknown cause, and no FDA-approved treatment for the tens of thousands of Americans living with this condition,” Dingell said. “I’m proud to introduce this resolution recognizing World FSHD Day to advocate for increased attention, awareness, and research to improve the lives of those with FSHD.”  
“FSHD impacts nearly one million people worldwide, more people than the entire 16th Congressional District,” said Rep. Kelly. “The more awareness we can spread through legislation like this, we can make more progress on this critical issue. Ultimately, that allows us to work toward better patient care and patient outcomes for everyone living with FSHD.”
"On behalf of the FSHD community, I want to express our deepest gratitude for the introduction of this critical legislation to raise awareness of Facioscapulohumeral Muscular Dystrophy (FSHD). FSHD impacts nearly one million people worldwide, and awareness is crucial for advancing the development of life-changing treatments,” said FSHD Society CEO Mark Stone. “We are immensely thankful for the efforts of our community advocates and families, whose dedication and voices have been instrumental in bringing FSHD to the forefront. This resolution is a meaningful advancement toward a better future for everyone affected by FSHD.”
FSHD is an inherited condition that can affect many family members across generations. It is genetically transmissible in an autosomal dominant fashion, meaning that an affected parent has a 50 percent chance of passing the genetic defect on to each child, but 30 percent of new FSHD patients have no prior family history of the disease. FSHD symptoms can develop at any age and can differ in the initial pattern of muscle weakness. Loss of upper body mobility is a debilitating symptom of FSHD that significantly impacts patients’ ability to perform daily tasks necessary to care for themselves, and can reduce patients’ ability to work and earn a living.
View the full text of the resolution here.
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