KALAMAZOO, Mich.--(Western Michigan University is hosting a weekend-long “Ice Duchenne” fundraiser on February 22-23 to benefit CureDuchenne, a nonprofit that raises awareness and funds research to find a cure for Duchenne muscular dystrophy. The Western Michigan University Bronco hockey team, a member of the Central Collegiate Hockey Association (CCHA), will sell raffle tickets to raise money and help find a cure for Duchenne. To promote the cause, Scott Niedermayer, one of the most decorated hockey players of all time, is also featured in a public service announcement that is planned to debut with the event.)--
“Right now there is no cure but the research looks promising. CureDuchenne is leading the effort to fund and accelerate research to help us get closer to finding a cure.”
Duchenne is a progressive muscle-wasting disease that impacts 1 in 3,500 boys. Boys are usually diagnosed by 5, in a wheelchair by 12 and most don’t survive their mid-20s. Duchenne, the most common and lethal muscle disease in children, affects 300,000 boys worldwide. All proceeds of Ice Duchenne will benefit CureDuchenne, the leading organization funding research through venture philanthropy to find a cure for Duchenne.
“Duchenne is a devastating disease,” said Rob Facca, Western Michigan assistant hockey coach, whose five-year-old son Louie lives with Duchenne. “Right now there is no cure but the research looks promising. CureDuchenne is leading the effort to fund and accelerate research to help us get closer to finding a cure.”
Niedermayer, former captain of the Anaheim Ducks and Stanley Cup champion, is a strong supporter of CureDuchenne and was recently honored by the nonprofit at the Champions to CureDuchenne gala. Niedermayer, who was recently named assistant coach of the Anaheim Ducks, is the only individual to win every major North American and international championship including the Memorial Cup, World Junior Championship, World Championship, World Cup, four Stanley Cups and two Olympic gold medals. The PSA will help raise awareness about Duchenne and encourage people to donate to CureDuchenne. To view the PSA click here.
“We are grateful for the hockey community’s support of CureDuchenne,” said Debra Miller, founder and CEO of CureDuchenne. “Based on the science, Duchenne could become treatable for this generation of boys. We just need to continue to fund promising research to ensure all Duchenne boys have the chance for an extended lifespan and improved quality of life.”
To donate go to www.cureduchenne.org.
CureDuchenne is a national nonprofit organization located in Newport Beach, Calif., dedicated to finding a cure for Duchenne, the most common and most lethal form of muscular dystrophy. As the leading genetic killer of young boys, Duchenne affects more than 300,000 boys worldwide.
CureDuchenne has garnered international attention for its efforts to raise funds and awareness for Duchenne through venture philanthropy. With the help of CureDuchenne’s distinguished international panel of Scientific Advisors, funds raised by CureDuchenne support the most promising research aimed at treating and curing Duchenne. To date, seven CureDuchenne research projects have made their way into human clinical trials – a unique accomplishment as few health-related nonprofits have been successful in being a catalyst for human clinical trials.