NEWPORT BEACH, Calif., April 2, 2014 – 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 March 29 at the Balboa Bay Club & Resort. More than 250 guests attended the gala that celebrated CureDuchenne’s 10 years of successfully advancing Duchenne research. The event raised more than $360,000 that will fund promising Duchenne research.
The Champions to CureDuchenne gala highlighted the urgent need to find a cure for Duchenne, a progressive muscle-wasting disease that impacts 1 in 3,500 boys. Boys with Duchenne are usually diagnosed by 5, in a wheelchair by 12 and most don’t survive their mid-20s. Currently, there is no approved treatment for Duchenne.
CureDuchenne honored Doug Freeman, a nationally recognized former tax attorney and business executive, who played an integral role in establishing CureDuchenne’s successful philanthropy model. Freeman provides strategic planning and organizational management advice for business, nonprofit, foundation, and family clients and has consulted nearly 300 family foundations, support organizations and public charities throughout the United States. He serves on the board of directors at First Foundation Inc. and on several nonprofit organizations. He is also the co-founder of National Philanthropy Day.
“Doug has been a CureDuchenne Champion from the beginning,” said Debra Miller. “Ten years ago, when we talked about our vision for CureDuchenne, Doug took us under his wing and helped us get started. When we wanted to invest in a small biotech company, Doug embraced our vision and even had a name for what we were doing…venture philanthropy. Ten years later, CureDuchenne has successfully completed that venture philanthropy project and is able to apply the gain to future research.”
Guests were treated to a special menu designed by Chef Jamie Gwen, a celebrity chef, certified sommelier, lifestyle expert and four-time cookbook author who has been featured on television, on the radio and in print from coast-to-coast for more than a decade. The Champions to CureDuchenne menu included spring salad, grilled peaches, burrata cheese, prosciutto and vanilla bean vinaigrette; Mediterranean bouillabaisse with sea bass, sweet shellfish, saffron broth, vegetables of the season and crostini; iron seared filet mignon with roasted shallots, smashed potato gremolata, gorgonzola cream sauce and porcini mushroom sauce; and a flight of indulgences including vanilla bean cheesecake mousse, balsamic macerated strawberries with Chantilly and chocolate peanut butter caramel corn. Gwen hosts a weekly syndicated radio show that can be heard every Sunday on 70 radio stations across the country and in Southern California on KFWB News Talk 980. Gwen recently won the Food Network’s new show “Cutthroat Kitchen.”
CureDuchenne founders, Paul and Debra Miller, and their 17-year-old son Hawken, who lives with the Duchenne, welcomed guests. Hawken gave a moving speech where he thanked all CureDuchenne supporters, spokespeople and his parents for doing everything they can to find a cure to help him and all 300,000 boys who live with Duchenne. Hawken recognized Tyler Armstrong, 10, a CureDuchenne champion who has climbed Mt. Kilimanjaro and Mt. Aconcagua to help raise awareness and money to help boys with Duchenne.
Sarah Burgess, singer-songwriter and contestant of the sixth season of American Idol, shared her story about her 7-year-old brother Jacob who lives with Duchenne. Burgess also sang “Run Away,” a song she wrote for CureDuchenne and all boys with Duchenne. All proceeds of “Run Away’’ are donated to CureDuchenne.
“Celebrating CureDuchenne’s 10-year anniversary is bittersweet: 10 is such a scary number for a child with Duchenne – that is when they could start losing their ability to walk,” said Burgess. “Jacob loves life and the simple pleasures it allows, and since I can’t give him my healthy muscles, I have given him my stubborn determination of doing all I can to help aid in finding a cure for Duchenne.”
Debra Miller highlighted how Duchenne research has advanced during the past 10 years. CureDuchenne has funded seven research projects that have gone into human clinical trials. When her son was diagnosed there were no clinical trials for Duchenne. Now there are two promising drugs that can slow down, stop and in some cases, reverse the progression of this heartbreaking disease that are waiting FDA approval.
“Unfortunately, this disease is too small to cure itself,” said Miller. “The funding is not available within the Duchenne community alone to raise the money needed to develop the cocktail of drugs necessary to address all of the elements of Duchenne. We are collaborating with biotech and pharmaceutical companies to find and vet joint research projects to find a cure for Duchenne.”
The evening included a silent and live auction, live musical performance and after hours party.
Champions to CureDuchenne sponsors included Kelly Thornton Smith, Lisa Argyros/Argyros Family Foundation, Athletes First, Lilly, PIMCO Foundation, First Foundation, Illumina, Integrated Oncology Network, Small Luxury Hotels, Layer Cake Wine and Specialty Restaurant Corporation.
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 as successful in being a catalyst for human clinical trials.