Myotonic Dystrophy Foundation

May 4, 2007, Atlanta. Approximately 20 runners and cyclists will kick-off Run America III on Clifton Road near CDC’s main campus (1600 Clifton Road) on May 4. Using a relay format, they will travel the entire Blue Ridge Parkway, ending at the Washington Monument in Washington DC on May 12 - 830 miles and eight days later. This is the third in a series of elite endurance challenges. The participants will raise awareness and research funding for myotonic dystrophy, the most common form of adult-onset muscular dystrophy, which affects 1 in 8000 people and is routinely misdiagnosed by doctors.

The event is planned in honor of Barry Wald, life-long friend of the event organizer and once a competitive athlete who now suffers from symptoms of myotonic dystrophy. Runners, who will each run 10-14 miles per day, include an Oregon law professor, a team from Scientific Atlanta, the U.S. Undersecretary of State for Political Affairs, and a 67-year old New Zealand law professor who has run over 100 marathons. In that Barry can no longer run, he and his sister, Liz, will lead the team of cyclists and pedal as many miles as he can manage each day. In 2002, a team of over 40 members ran and biked 3,300 miles in “Run America I” from Tillamook, Oregon, to Boston, Massachusetts. In 2005 a team comprised of many of the same individuals ran and cycled a second relay, Run America II, from Portland, OR, to San Francisco, CA. These two events raised over $225,000.

Run America requires the endurance athletes to raise money for myotonic dystrophy research in order to participate. They sleep on high school and college gym floors and often visit with local coaches and track and cross-country teams who sponsor them in small towns and cities along the route.

All money raised by Run America funds specific myotonic dystrophy research at the University of Rochester in New York. Investigators now understand the disease mechanism causing this disorder, and the Rochester team is now embarking on a second phase of research to find treatment.

Prof. Peter Harper of Wales, author of the definitive work on the disease, describes this degenerative, multi-systemic disease, as “…probably the most variable disorder found in medicine.” Not only does it cause muscle deterioration and stiffness, but also complications in the cardiac, respiratory, endocrine, gastrointestinal and skeletal systems and the brain, eyes, teeth, and hair. It can appear at any time from birth to old age. As a dominant genetic disorder, it affects families vertically and horizontally, often presenting different symptoms even among siblings. The most severe form, congenital myotonic dystrophy, causes some infants, most often born to women with the disease, to lack the strength to breathe and feed. They often die at birth.

Researchers find that the genetic flaw, identified in the early 1990’s, generally causes more severe symptoms in subsequent generations with onset at an earlier age. This characteristic, called anticipation, renders myotonic dystrophy a genetic time bomb.

People interested in making a pledge or contribution to benefit myotonic dystrophy research can do so by sending a check to Craig Johnston, President, Run America Foundation, 100155 W. Terwilliger, Portland, OR 97219. Please include your return address so that you can receive a tax-exempt receipt. Full details are available at www.runamerica.org where you can also access the contribution page and make a donation through Goundspring, the on-line service provider.

Run America is being organized in partnership with the Myotonic Dystrophy Foundation, a tax-exempt organization with a mission to lead and mobilize resources toward effective management, treatment and a cure for myotonic dystrophy through education, advocacy and research. Atlanta resident Shannon Lord is Chairman of the Board.

Click here to see photos of this event.

If you would like more information about this event, please contact the Run America Organizer, Craig Johnston or the honoree and cyclist, Barry Wald, at contacts listed above; or, Lisa Vittek, Board Member of the Myotonic Dystrophy Foundation at lisa.vittek@myotonic.org .