Senator Collins Recognized by Parent Project Muscular Dystrophy

Honor conferred in recognition of Senator Collins' longstanding efforts to support rare disease research.

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WASHINGTON, D.C. - Senator Collins received recognition for her leadership in supporting rare disease research from Parent Project Muscular Dystrophy (PPMD). PPMD awarded her this honor at an event celebrating the 25th anniversary of the Muscular Dystrophy (MD) CARE Act. Brian Denger, a parent from Biddeford whose son, Patrick, has Duchenne muscular dystrophy (DMD), introduced Senator Collins at the event.

"It is a pleasure to join parents and advocates from throughout the country to celebrate the 25^th anniversary of the MD CARE Act. Together, we are making progress toward our goal of finding a cure for Duchenne muscular dystrophy," said Senator Collins during her remarks. "It is truly an honor to be introduced by Brian Denger from my State of Maine. My motivation to take action about Duchenne muscular dystrophy was sparked when I first met Brian and his wife, Alice, and their two wonderful boys-Matthew and Patrick-both with Duchenne muscular dystrophy."

"The Dengers' strength moved me to become involved in the fight for more research funding. The courage and spirit of this remarkable family are so inspiring. Sadly, Matthew died in 2013 at the age of 20. His life was far too brief but filled with accomplishments," she continued. "He went to college. He was dedicated to helping others and volunteered for years in my constituent service office near his home. Along with his family, he was a passionate advocate for Duchenne muscular dystrophy research and access to treatments. After I met the Dengers, I knew that, given our nation's wealth of scientific expertise, we had to do more for those with Duchenne and their families."

"Since the MD CARE Act was signed into law in 2001, the federal government has invested over $500 million in Duchenne research and treatment. As Chair of the Appropriations Committee, I led the passage of the 2026 funding bill in February that includes $9 million-an increase over the prior fiscal year-for CDC's Muscular Dystrophy activities. We must not take our foot off the accelerator," Senator Collins concluded.

"Parent Project Muscular Dystrophy and the Foundation to Eradicate Duchenne recently recognized Senator Collins for her two and a half decades of supporting Duchenne research and education programs beginning with her sponsorship of the MD CARE Act of 2001. I spoke to recognize the extraordinary relationship I have with Senator Collins that led to her untiring commitment on behalf of my sons to ensure essential research for Duchenne muscular dystrophy is funded by federal agencies. This work includes care guidelines developed by the Centers for Disease Control and Prevention that has extended the median age of survival for people living with this condition by over a decade and FDA approval of therapies to help patients affected by this condition. My family and I appreciate the lead role Senator Collins has played supporting federal programs that improve outcomes for people affected by Duchenne muscular dystrophy. The Senator and her staff have always welcomed my family's advocacy and we are truly grateful," said Brian Denger.

As Chair of the Senate Appropriations Committee, Senator Collins secured an increase in funding to $9 million per year for muscular dystrophy research at the CDC in the recently enacted appropriations legislation. Senator Collins also advocated for Duchenne muscular dystrophy to be included in the Department of Defense's Congressionally Directed Medical Research Program. She helped secure a record-high $12.5 million for this program in FY26.

Last year, Senator Collins was honored by the Foundation to Eradicate Duchenne for her leadership in securing DMD research funding. Senator Collins received this recognition at the Foundation's 25th annual "Dining Away Duchenne" event.

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