Jeff Bigelow – DMDRP Consumer Story
My name is Dr. Jeffrey Bigelow, and I was able to participate as a consumer advocate in the recent DMDRP proposal reviews process. I happen to be a neurologist (specializing in epilepsy), and practice in Murray, UT. I like to paint, draw, run, and travel. My oldest son Henri was diagnosed with Duchenne Muscular Dystrophy (DMD) at the age of two. It is a spontaneous mutation in our family and was very unexpected; during medical school I had learned about the disease and remember thinking, thank goodness that is not in my genes! Henri is now 11 and has been in a wheelchair for 2 years. Everything we do requires extra thought and extra time to figure out how to navigate accessibility issues and involve Henri. For the past 2 years I have been serving as a board member for the advocacy organization Parent Project Muscular Dystrophy (PPMD). PPMD was founded by Pat Furlong, a dynamic woman whose two sons died as teenagers from DMD in the 1990s. PPMD has had boots on the ground in advocacy, changing policies, getting research funding for the past 25+ years. I have been able to participate in 2 days on The Hill in D.C., advocating with Senators and Congresspeople to support DMD research. This advocacy has changed lives and has helped contribute to the first-ever treatments for DMD, with many drugs in the research pipeline. PPMD’s annual conference gives families a chance to come together and discuss real life problems affecting our boys and families on a daily basis. As a member of PPMD, I was nominated to be a member of the DMDRP review process. I was aware of the program due to advocating for increased funding for DMDRP with PPMD the preceding 2 years. Being a member of the review process was exciting. It was invigorating to read research proposals aimed at improving life for my boy and other boys with DMD. It was encouraging to see people dedicating their lives and careers towards making life better for my boy. I know research treatments will be developed to change the life course and day to day suffering experienced by my son Henri, and other boys with DMD and their families. Great minds are out there, horizons are opening, and this hopeless disease is becoming more hopeful.
Last updated Sunday, December 31, 1600