I first met U.S. Sen. Susan Collins after my sons’ diagnosis with Duchenne muscular dystrophy.

In 2001, I visited the senator’s office and told her how the condition impacts my family. Moved by our story, Sen. Collins helped champion legislation to harmonize muscular dystrophy research at the National Institutes of Health and the Centers for Disease Control. This research is improving the understanding of the disorder and treatment opportunities and led to standardizing Duchenne muscular dystrophy care guidelines which increased the median age of survival by a decade.

Due in part to the guidelines, increased survival means more patients are being treated in adult clinics. Sen. Collins worked to ensure there was funding to update the previously pediatric-focused guidelines to include adult care practices.

Each year I’m welcomed by the senator and her staff to discuss health-related issues, at times joined by my sons. Sen. Collins takes time to learn how she might help my sons and steadfastly prioritizes legislation focused on improving outcomes for people living with serious medical conditions. She has mentioned my sons when speaking about legislation introduced on their behalf. When my son Matthew succumbed to Duchenne muscular dystrophy, Sen. Collins called me to express her sympathies for our loss.

The senator and her staff are thoughtful and take time to understand ways federal agencies can help those affected by conditions like Duchenne muscular dystrophy. My family and I are grateful for Sen. Collins’ support of research and policy issues we believe support that goal.

Brian Denger


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