With each step Bellevue-native Sean Marshall takes towards the top of Mount Rainier, he carries with him the hope of finding a cure for Duchenne Muscular Dystrophy (DMD). Marshall and a team of 11 volunteers are making the grueling climb to raise money and awareness about a disease that is the leading genetic killer of young boys.

The Climb to Cure Duchenne began on Saturday, August 29 and ended with the team reaching the summit on Tuesday, September 1.

The team of climbers include several parents, research scientists, and advocates and was led by certified mountain guides from RMI Expeditions. Together, the group of climbers represent CureDuchenne, a California-based, non-profit organization founded in 2003 by Paul and Debra Miller. The husband and wife team launched the non-profit following their son’s diagnosis of DMD at the age of five. Duchenne Muscular Dystrophy affects more than 1 in 3,500 boys worldwide and is the most common and lethal form of Muscular Dystrophy.

Scientists have yet to find a cure.

“You have this beautiful child and you think everything is wonderful and then you get this devastating news that your son won’t be living out the dreams that you always hoped for,” Debra Miller explained, at the climb kick-off event at the REI Flagship store in Seattle. “We got the prognosis and then were told to go home and enjoy our child the best that we could. We found that to be totally unacceptable. As we began to do research for MD, we saw a void in the amount of funding for research for Duchenne so we started CureDuchenne.”

The CureDuchenne team’s climb of the 14,410-foot Mount Rainier will raise nearly $175,000 for DMD research.

For many of the team members, including Marshall, this will be the first time climbing a mountain of this proportion.

“I’m a little nervous because it will definitely be a challenge, but the thought of helping these children and finding a cure for Duchenne will help to spur us on even when we feel like quitting,” Marshall said.

Boys with DMD are usually diagnosed by the age of five, in a wheelchair by age 12, and may become completely paralyzed by their late teens.

“Having a son was a dream come true. I couldn’t wait to do physical activities with him like playing catch or climbing a mountain. Now, unfortunately, he can’t do that because of his disease. As a father it breaks my heart,” said Paul Miller, the co-founder of CureDuchenne. “I plan to climb this mountain for him, because he can’t. I will.”

Research to find a cure for DMD is currently under way at the Muscular Dystrophy Cooperative Research Center (MDCRC) at the University of Washington. The MDCRC Director Jeffrey Chamberlain Ph.D. attended the Climb to Cure Duchenne kick-off event to address the importance of funding and raising awareness for Duchenne research.

“We have put together a research center where we are working with treatments for MD including gene therapy. We have been able to show that with the gene therapy method, when applied to mice who have Muscular Duchenne, it’s greatly effective and expands their life span. It’s a very promising approach to a treatment,” explained Chamberlain. “All that stands in our way now is the funding.”

The next step comes in the form of human trials to test the treatment.

“The research is happening, we just need the dollars to support it. We have rallied a huge group of people from across the country and these 12 brave schools to climb Mount Rainier because our boys certainly can’t,” Debra Miller said. “We don’t have a Michael J. Fox or Lou Gehrig who can put this disease on the map. It’s up to us as parents to shout as loud as we can. If that means climbing to the top of Mt. Rainier to do it, we will!”

Lindsay Larin can be reached at 425.453.4602.

For more information on Muscular Dystrophy Cooperative Research Center, visit http://depts.washington.edu/mdcrc/index.html. To learn more about the Climb to Cure Duchenne, visit http://www.cureduchenne.org/.