Napa in Newport Raises $680,000 to Help Save the Lives of Boys with Duchenne Muscular Dystrophy

Newport Beach, Calif.

NEWPORT BEACH, Calif., March 5, 2015 – Nearly 300 guests enjoyed the fun and flavor of Napa Valley wineries on February 28 as they gathered at the Balboa Bay Resort with a common goal of saving the lives of thousands of boys with Duchenne Muscular Dystrophy. The Napa in Newport Wine Auction raised more than $680,000 to support CureDuchenne’s mission to find a cure for Duchenne, a progressive muscle-wasting disease that leaves boys in wheelchairs by their mid-teens and claiming their lives by their mid-20s.

Napa in Newport attendees were treated to a spectacular wine tasting presented by 29 of Napa Valley’s most prestigious wineries and curated by Master Sommelier Michael Jordan, one of only 15 people in the world to hold both Master Sommelier and Certified Wine Educator diplomas. Chuck and Anne McMinn, owners of Vineyard 29, were the honorary event co-chairs, and renowned Chef David Slay of the celebrated Park Ave restaurant personally designed the 4-course menu for the evening. Unique items, rarely available wines and custom, once-in-a-lifetime Napa Valley experiences highlighted the silent and live auction.

CureDuchenne co-founders Debra and Paul Miller welcomed the attendees and thanked them for their support of the organization’s mission to find a cure for this disease; their son Hawken was diagnosed with Duchenne 12 years ago at age 5.

“When our son was diagnosed, doctors told us to go home and love him since there was nothing that could be done for boys with Duchenne. We did love him but we also planned a bold attack to hit this disease with everything we had. Not just for Hawken but for all the boys around the world with Duchenne,” said Debra Miller. “Today the very first pharmaceutical treatments for Duchenne are in the pipeline, and this is only possible because of the support of so many caring people.”

Seven CureDuchenne-funded research projects have advanced into human clinical trials, providing a ray of hope for Duchenne families around the world. CureDuchenne funded early research in three companies, Prosensa (recently acquired by BioMarin), Sarepta Therapeutics and PTC Therapeutics, each of these biotech companies will be applying for FDA approval for their Duchenne drugs this year. These drugs could be the first therapies ever approved for this deadly disease.

On behalf of CureDuchenne, the Miller’s honored Dr. Brenda Wong from Cincinnati Children’s Hospital Medical Center for her outstanding leadership in treating boys with Duchenne and for stewarding the clinical trials of promising Duchenne therapies. The Director of the Comprehensive Neuromuscular Center at Cincinnati Children’s Hospital Medical Center and Professor of Pediatrics and Neurology at the University of Cincinnati, Dr. Wong and various specialists at the Neuromuscular Center treat thousands boys with Duchenne, providing state of the art coordinated interdisciplinary care.

Napa in Newport Wine Auction sponsors included FlexJet, Argyros Family Foundation, BioMarin, Masimo, Sarepta Therapeutics, 55⁰, Kenny the Printer, First Foundation Advisors, Paloma Medical Group, John Balisey & Co., Ueberroth Family Foundation and WHGC.

Napa In Newport featured the following wineries: Vineyard 29, Anomaly Vineyards, Barbour Vineyards, Broman Cellars, Cardinale, Clif Family, Cimarossa Howell Mountain, Crocker & Starr, Dana Estates, Darioush, David Arthur Vineyards, Davis Estates, D.R. Stephens Estate, Fairchild Wines, Fait-Main, Ferguson Crest, Gandona Winery, Gemstone Vineyard, Heitz Cellar, Hill Family Estate, Jamieson Ranch Vineyards, Kelly Fleming Wines, Lail Vineyards, Lede Family Wines, Memento Mori, Redmon Wines, Relic, Saint Helena Winery and Sequoia Grove.

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About CureDuchenne
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 advanced into human clinical trials – a unique accomplishment, as few health-related nonprofits have been as successful in being a catalyst for human clinical trials.

 

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