Run America is a fundraiser geared towards enabling research efforts dedicated to finding a cure for myotonic muscular dystrophy, the most common form of muscular dystrophy that affects both infants and adults. To date, we have raised over $325,000 in donations.
For Run America I, in 2002, we ran and biked for the first time in honor of our friend, Barry Wald, who was diagnosed with myotonic muscular dystrophy in 1986. Many of us had run with Barry on the “Endangered Species,” a 12-person relay team that has completed the Oregon Hood-to-Coast relay (a 200 mile running relay from Mt. Hood to the Oregon Coast) several times and also tackled the Providean Relay from Calistoga to Santa Cruz, CA.
We continue to run in Barry’s honor and fully embrace the broader goal of helping the 1 in 8,000 individuals affected by the disease. While the money we raise through donations goes to researchers at the University of Rochester Medical Center (URMC), there is also a national Myotonic Dystrophy Foundation, a patient advocacy group dedicated to leading and mobilizing resources toward effective management, treatment, and a cure for myotonic dystrophy, a common form of muscular dystrophy. This outstanding organization holds an annual Family Conference called Empower which is open to people of all ages.
We are thrilled hat the researches at the URMC, who have received the funds we’ve raised to date, have found a way to block the genetic flaw at the heart of a common form of muscular dystrophy. The work of URMC neurologist Charles Thornton, M.D. is now getting national attention, winning a NIH grant. We’re also seeing “big pharma” get into the game with a recent announcement to commercialize a novel antisense drug for the treatment of myotonic dystrophy type 1 (DM1).