Our Cause
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 is holding a Family Conference called Empower 2010 that will take place August 13-15, 2010 in Minneapolis/St. Paul. Too bad the location is a bit too far off our route to pop by!
We are excited to share that 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.
Senior author of the study released in July 2009, URMC neurologist Charles Thornton, M.D., believes:
“this study establishes a proof of concept that could be followed to develop a successful treatment for myotonic dystrophy… It also demonstrates the potential to reverse established symptoms of the disease after they have developed, as opposed to simply preventing them from getting worse.”
For more information on this study, as well as the Wellstone Muscular Dystrophy Cooperative Research Center headed by Dr. Thornton, please visit here.
Photo: Deposits of toxic RNA (red) are seen here inside muscle cell nuclei (blue) from an individual with myotonic dystrophy (credit URMC).
