PHILADELPHIA, May 14, 2014 – CureDuchenne, a nonprofit that raises awareness and funds research to find a cure for Duchenne muscular dystrophy, held its inaugural Blingo to CureDuchenne event on May 3 at the Hyatt Regency in Philadelphia. Nearly 300 people, including Philadelphia’s top business and community leaders, enjoyed an elegant evening of bingo and bling with celebrity guests while raising more than $175,000 to support the most promising research projects aimed at treating and curing Duchenne.
The event honored local entrepreneurs and philanthropists Wayne and Kimberly Kimmel. Former Philadelphia Mayor and Pennsylvania Governor Ed Rendell and Rakia Reynolds from Skai Blue Media were the Blingo master of ceremonies. CNN on-air health expert Dr. Jennifer Caudle; The Preston and Steve Show’s Marisa Magnatta; and The Monday Morning Quarterback’s Andrew Brandt enthusiastically called blingo while guests, dressed in their finest bling, won amazing prizes donated by local businesses. Singer-songwriter Sarah Burgess, a contestant on American Idol season 6, sang “Run Away,” a song she wrote for her 7-year-old brother and other boys who live with Duchenne. DJ Zeke Thomas kept the energy going as he spun tunes during Blingo.
Guests were moved by a CureDuchenne video and heard inspirational words about living with Duchenne. “I have Duchenne, but Duchenne doesn’t have me,” said Yuva Gambhir, 12, who lives with Duchenne. “I enjoy my life. I just wanted to say that we all have problems from time to time, just focus on the good things – there is always a way to enjoy life. Thank you for coming here and helping us fight Duchenne.”
Blingo to CureDuchenne 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. Debra Miller, founder and CEO of CureDuchenne, and Michael Kelly, chief scientific officer of CureDuchenne, spoke about the current status of the research and that in order to “find a cure for Duchenne we need to fund the cure.”
“It’s really great to see so many people here to support the effort to find a cure for this disease that so few have heard about,” said Philadelphia resident Manu Gambhir, father of Yuva who lives with Duchenne and chair of Blingo to CureDuchenne. “We’re relentless in this fight and are making significant headway in Duchenne research. Sometimes I think of this fight as Davids vs Goliath. To defeat this Goliath, we need more Davids and it’s nice to see that we are growing our ranks by another few hundred tonight.”
Blingo to CureDuchenne was presented by Bernie Robbins Jewelers who provided exquisite jewelry that was auctioned and raffled off at the event. Thrive Gaming LLC, a full service gaming advisory firm specializing in regulated and social casino gaming, was also a presenting sponsor. Additional sponsors included Zoomin, Skai Blue Media, Spalding Automotive Inc., Thomas Jefferson Hospital and TJUH System, Moss Rehab, Parx Casino, The Governor Woods Foundation, Sandra Duggan & Javier Kuehnle, Kimmel-Spiller Charitable Foundation, Tax Accounting Group of Duane Morris LLP, Wescott Financial Advisory Group LLC, EKL Machine Company, Krevitz Metals, Friends of Gambhir, SugarHouse Casino, The Condo Shop and special community partner Children’s Hospital of Philadelphia, among others.
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.