U.S. Rep. Mike Kelly (R-PA) expressed support for designating June 20 as a day to raise awareness of Facioscapulohumeral Muscular Dystrophy (FSHD), a genetic disease that affects more than 40,000 Americans.
FSHD is an inherited neuromuscular disease that leads to the weakening of skeletal muscles, often beginning with the face, shoulders, and upper arms.
“FSHD impacts nearly one million people worldwide, more people than the entire 16th Congressional District,” Rep. Kelly said.
The congressman introduced House Resolution 1307 on June 18 along with bill sponsor U.S. Rep. Debbie Dingell (D-MI) to make June 20 World Facioscapulohumeral Muscular Dystrophy Day.
“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,” Kelly said.
The resolution recognizes the importance of improving awareness of and education about FSHD, encouraging accurate and early diagnosis of FSHD through genetic screening; funding future scientific research to improve physical functioning and quality of life for individuals living with FSHD; and developing new treatments, diagnostics, and cures for FSHD.
“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,” Rep. Dingell said.
FSHD Society CEO Mark Stone said awareness is crucial for advancing the development of life-changing treatments for those living with FSHD. “This resolution is a meaningful advancement toward a better future for everyone affected by FSHD,” he said.