NEWPORT BEACH, Calif., February 14, 2013 – CureDuchenne, a nonprofit that raises awareness and funds research to find a cure for Duchenne muscular dystrophy, held its annual Champions to CureDuchenne Newport Beach Gala on Saturday, February 9 at the Balboa Bay Club & Resort. The event raised almost $800,000 toward research to find a cure for Duchenne, a progressive muscle-wasting disease that impacts 1 in 3,500 boys.
More than 300 people attended the CureDuchenne gala. Guests were treated to a special dinner menu designed by Stan Frazier, former drummer for rock band Sugar Ray, co-owner of A Restaurant in Newport Beach and the most recent winner of “Chef Race.” The menu included Ceviche and Little Gem Lettuce; Black Sea Bass on Braised Rainbow Chard with Meyer Lemon Buerre Blanc, Braised Short Ribs with Truffled Mascarpone Polenta and Rosemary Balsamic Syrup; and Chocolate Banana Bread Pudding. Two of the courses on the menu were items Frazier created during Chef Race challenges.
The Champions to CureDuchenne event featured an inspirational program that began with CureDuchenne founders, Debra and Paul Miller, and their 16-year-old son Hawken, who lives with Duchenne. Duchenne is the most common and lethal muscle disease in children. Boys are usually diagnosed by 5, in a wheelchair by 12 and most don’t survive their mid-20s.
“We now have visibility to a cure,” said Debra Miller, founder and CEO of CureDuchenne. “Our organization doesn’t need to raise the hundreds of millions of dollars it takes to develop a drug; we only need about $6 million dollars over the next two years to initiate the research so that we can turn them over to the large drug developers.”
CureDuchenne honored Scott and Lisa Niedermayer for their strong commitment to CureDuchenne over the years. Niedermayer is one of the most decorated hockey players of all-time. Niedermayer, 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. A tribute video showed highlights of Niedermayer’s hockey career and how he is a champion on and off the ice. Niedermayer has supported CureDuchenne by climbing Mt. Shasta and the Grand Tetons to raise awareness and funds. Lisa Niedermayer has served on the Newport Beach Gala committee and inspired others to get involved. Lisa’s cousin has FSHD, a form of muscular dystrophy, and she is also an advocate for that disease.
Dr. Michael Kelly, CureDuchenne’s chief scientific officer, gave guests an overview of the state of Duchenne research and CureDuchenne’s comprehensive strategy of treating the whole disease. Dr. Kelly explained that based on the current science that Duchenne could become treatable for this generation of boys. CureDuchenne is helping to accelerate this research. CureDuchenne funded two companies early on that are on the way to becoming the first to seek FDA approval for drugs to treat Duchenne.
Mary Sahagun, a Duchenne parent, shared her story about losing her son Kenny to Duchenne at age 16. “It is too late for my son, but it is not too late for other boys with Duchenne,” said Sahagun.
An emotional video featuring other Duchenne families illustrated the urgency of finding a cure for Duchenne by showing the progression of the disease. The video also highlighted hope for Duchenne families that there are several promising drugs going through human clinical trials.
The Champions to CureDuchenne gala ended with a pledge program and live auction. Live auction items included a La Jolla weekend escape; an ultimate sports experience; a Napa getaway with a private jet; an ultimate restaurant package; Fleetwood Mac Concert experience; a Bahamas Getaway at The Cove; and a Yellowstone Club, Big Sky Montana vacation.
Champions to CureDuchenne event sponsors included Wells Fargo, Argyros Family Foundation, Peter & Virginia Ueberroth Family Foundation, Ducks, Honda Center, Hundred Acre Wines, PIMCO, Muscle Milk and Illumina.
For more information on CureDuchenne go to www.cureduchenne.org or call 949-872-2552.
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.