AUSTIN, Texas--(BUSINESS WIRE)--In 2005 while Vince Young was leading his University of Texas teammates to a coveted national title, the Revell family in Austin was learning that their young son had Duchenne Muscular Dystrophy and might be wheelchair-bound by the time he was in college. After meeting, the Revell family’s story touched Young and he marshaled fellow University of Texas teammates to help. On April 11th, as the host of the 6th annual Champions to CureDuchenne, Young, his UT teammate Kasey Studdard and more than 300 supporters helped raise more than $300,000 to aid efforts to find a cure for this devastating inherited disease.
Tim and Laura Revell together with Mack and Sally Brown created the Champions to CureDuchenne event to help raise awareness and fund research to find a cure for their son and every other boy with Duchenne. The Browns introduced Young who has now hosted the event for the past three years. Since the inaugural event, Champions to CureDuchenne, the Longhorn style, Texas-sized tailgate party held annually at the University of Texas Golf Club, has raised more than $1 million for this disease that currently has no cure and no treatments.
Around the world, more than 300,000 boys are affected by Duchenne. Found mostly in boys, Duchenne attacks the muscles causing life-threatening deterioration that leaves boys in a wheelchair by their mid-teens and usually claiming their lives by their mid-20s. Unfortunately exercise only exacerbates Duchenne symptoms, leaving Duchenne patients sidelined from most activities.
Funds raised from this Austin event will specifically be used to further the groundbreaking research by Dr. Kevin Flanigan of Nationwide Children’s Hospital who has discovered a genetic therapy that skips the damaging effect of the duplicated gene that causes Duchenne and leads to restored muscle function. There are various mutations on the dystrophin gene and duplications are amongst the rarest form. This life-changing discovery could be in human clinical trials the next few years. While this initial treatment will only be effective for a small population of Duchenne patients who have this gene duplication, the significance of this discovery is tremendously impactful to research for a treatment and cure for the broader Duchenne community
“When our boys were diagnosed with Duchenne, we were told there was no cure or treatment and that a miracle was needed. For thousands of families like ours Dr. Flanigan is the first step toward that miracle,” said Tim Revell, father of 10-year-old Timothy and 7-year-old Andrew, who both have Duchenne.
“Being active and playing football have been such a vital part of my life, and I can’t imagine what it would be like to not be able to use my muscles,” Young said. “Boys this age should be able to run, play sports and not have to worry about their muscles getting weaker. We need to find a cure to save Timothy, Andrew and others with Duchenne.”
“It’s devastating to know your two children, your legacy, won’t outlive you,” Tim said. “The Austin community stepped up with tremendous support to be part of the solution. While it is devastating to receive a pronounced death sentence for your little boy, there is hope as a cure is close; it just takes funding.”
A total of 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. This year and next, each of these biotech companies will be applying for FDA approval for their Duchenne drugs. These drugs could be the first therapies ever approved for this deadly disease.
The Champions to CureDuchenne Austin Gala was presented by Johnny Carinos. Event sponsors included Cullen Family Charitable Foundation, HEB, Revenew International LLC, The Cain Foundation, The Page Foundation, USA Wire & Cable, Service Group, Summit Stoneworks, Arthur J. Gallagher & Co., NFL Alumni Austin, SG Family Trust, Diamonds Direct and Audio-Visual Consultations.
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.