PHILADELPHIA--(BUSINESS WIRE)--CureDuchenne, a national nonprofit that raises awareness and funds research to find a cure for Duchenne muscular dystrophy, will put the bling back in bingo for their second annual fundraiser on Saturday, April 11 at the Rittenhouse Hotel. BLINGO to CureDuchenne is a vibrant evening, benefitting CureDuchenne, featuring the charismatic producer of WMMR Preston and Steve Show – Marisa Magnatta as mistress of ceremonies. Join former Governor Edward G. Rendell, meteorologist and broadcast sensation John Bolaris, comedian Joe Conklin, former Philadelphia Eagles quarterback A.J. Feeley and CBS 3/CW Philly 57’s Emmy Award-winning medical specialist Stephanie Stahl for this star-studded celebration for a cause.
Duchenne is the most common and lethal form of muscular dystrophy. As the leading genetic killer of young boys, Duchenne affects more than 300,000 boys worldwide with nearly 20,000 boys living with the disease in the United States alone. Boys are usually diagnosed by age five, in a wheelchair by 12 and most don’t survive their mid-20s. Currently, there is no treatment or cure for Duchenne.
“Science is getting closer to finding a cure for this devastating disease that impacts my son and more than 300,000 other amazing boys worldwide,” says Philadelphia tech entrepreneur Manu Gambhir, a Duchenne parent and the chairman of BLINGO to CureDuchenne. “CureDuchenne is paving the way to fund crucial research and drug development to find treatments and a cure for Duchenne to help save this generation of Duchenne boys.”
The Gambhir family, who resides in Center City, knows first-hand the impact that Duchenne can have on a young boy and their family. They are devoted to finding treatment and a cure for their son Yuva, a spirited 13-year-old who is battling the illness that at a young-age has made it difficult for him to stand, walk or even reach.
The Gambhir family frequently visits The Children’s Hospital of Philadelphia (CHOP) and their Neuromuscular Program and was impressed by the treatment, care and dedication shown by the hospital. This year, BLINGO to CureDuchenne will honor CHOP as a community supporter in fighting Duchenne muscular dystrophy.
“The Children’s Hospital of Philadelphia’s team is committed to providing the most current, comprehensive and specialized care possible,” said Debra Miller, founder and CEO of CureDuchenne. “We are proud to have them as our 2015 BLINGO to CureDuchenne honoree and are grateful for the work they do year-round. We will continue to fund research until there is a cure for all boys and young men that live with Duchenne.”
CureDuchenne is leading the charge to find a cure, and to date, seven research projects have advanced into human clinical trials. Despite the disease’s shattering impact, Duchenne research is severely under-funded and awareness is significantly lower than other pediatric diseases. CureDuchenne pushes towards innovation and advancement, and has funded three biopharmaceutical companies, Prosena (recently acquired by BioMarin Pharmaceutical), Sarepta Therapeutics and PTC Therapeutics that are on the way to become the first to see FDA approval for drugs to treat Duchenne.
Tickets for BLINGO to CureDuchenne and sponsorship information can be found at www.blingophilly.org.
BLINGO to CureDuchenne sponsors include Parx Casino, Philadelphia Eagles, Jefferson, Drexel University, Michael Gillen of the Tax Accounting Group of Duane Morris LLP, Grant Rawdin of Wescott Financial Advisory Group LLC, The Governor Woods Foundation, Domus Inc., Spalding Automotive, BMW of the MainLine, EKL Machine, Krevitz Metals and community supporter The Children’s Hospital of Philadelphia.
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. www.cureduchenne.org
Duchenne is a devastating muscle disease in children. Historically, most boys who have it do not survive beyond their mid-twenties, and those that do will be wheelchair bound by age 12 and experience social isolation. The simplest of tasks become difficult, and in the later stages, heart and breathing muscles begin to fail. Nearly 20,000 boys are living with the disease in the United States alone and more than 300,000 worldwide. The disorder knows no cultural, economic or social boundaries.