Mr. Cory Goes To Washington

Dave Stalling is a native Westporter. He served in a Marine Corps Force Recon unit, earned degrees in forestry and journalism, and has worked for several wildlife conservation organizations.

Dave is also the proud father of a young man named Cory. This is Dave’s guest post, on “06880.”

Although he grew up in Westport around the same time I did, I never met Peter Weisman. He had Duchenne Muscular Dystrophy, and died at the age of 15. It was 1980 — just a year after I graduated from Staples.

I learned about Peter nearly 30 years later when another Westport friend, Bill Handley, gave me Intensive Care: A Family Love Story. Written by Peter’s mother Mary-Lou Weisman, it described her family and son’s struggle with Duchenne. (The book was made into a 1985 movie, “A Time to Live.” It earned Liza Minnelli a Golden Globe for her portrayal of Mary-Lou.)

When I read her book in 2009, I had lived in Montana for 23 years. My own son, Cory, had just been diagnosed with Duchenne. He was 9.

I was devastated. I felt a need to talk to Mary-Lou. So out of the blue, I called her.

At first she thought I was a solicitor and said she was busy. I quickly said, “My son was just diagnosed with Duchenne.” After a bit of silence she replied, “For you, I have all the time in the world.”

She has indeed given me a lot of time, and helped me through the tumultuous journey of coming to terms with my son having a fatal disease. Her advice and encouragement inspires hope. A lot has changed since Peter died: New treatments are available; scientists feel they are close to a potential cure, and clinical trials are underway with promising results.

But more awareness, support and money is urgently needed to turn hope into reality.

Cory and I recently traveled from our home in Missoula to Washington, DC. We participated in an advocacy conference organized by Parent Project Muscular Dystrophy, a national nonprofit leading the fight to end Duchenne. Cory met collectively and one-on-one with the entire Montana congressional delegation: Senators Jon Tester and John Walsh, and Congressman Steve Daines.

Congressman Daines took Cory onto the House floor, let him cast votes, and introduced him to other representatives. One was Tammy Duckworth of Illinois. She lost her legs while serving as a helicopter pilot in the Iraq War, and uses a wheelchair.

Cory befriended an assistant clerk to the Supreme Court. He took Cory into the courtroom (off limits to tourists). Cory met Senator Roger Wicker of Mississippi, who is leading Congressional efforts to increase awareness and support for fighting Duchenne. We also had plenty of time for to visit various monuments and museums.

More importantly, Cory persuaded both Montana senators and our congressman to co-sponsor re-authorization of the Muscular Dystrophy Care Act. It could provide funding and support for further research and development of treatments, therapies and a cure that could help save not only his own life, but those of nearly 350,000 boys around the world who have Duchenne.

The trip was paid for entirely by donations from generous, supportive friends and family members, including numerous people from Westport.

Thanks to all who made this trip possible.  Special thanks to Peter Weisman, whose strength, courage and memories are kept alive by his amazing family. Peter continues to inspire boys like my son Cory to fight Duchenne, while enjoying life to the fullest.

(Last year, Dave’s Staples Class of ’79 donated leftover reunion money to help Cory and other boys with Duchenne. To contribute, click here.)  

If your browser does not take you to this video of Cory’s trip, click here.