|[February 14, 2013]
Champions to Cure Duchenne Newport Beach Gala Raises $800,000 to Find a Cure for Duchenne Muscular Dystrophy
NEWPORT BEACH, Calif. --(Business Wire)--
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
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 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 ovr 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 (News - Alert), 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 (News - Alert), 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.
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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.
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