WASHINGTON — Former President Bill Clinton and Special Olympics Chairman Tim Shriver will headline the inaugural Live Life Full DC gala on Oct. 10, an event that will raise money for research into Prader-Willi syndrome.
The event will support the Foundation for Prader-Willi Research. The syndrome is a rare genetic disorder that can cause low muscle tone and insatiable appetite. The syndrome can create abnormal growth, weak muscles, and extreme obesity. It results from an abnormality of a chromosome, and diagnosis is based on genetic testing.
Pittsburgh Pirates manager Clint Hurdle is the national spokesman. His daughter was diagnosed with the syndrome, which affects about 1 in 15,000 new born babies.
The chairs of the event are Ian Alberg and Mary Morrison Alberg, who worked in the Clinton White House. Their son Carson was diagnosed soon after he was born. Ian Alberg, principal at Edgewater Partners in DC, said that a challenge is that because the syndrome is relatively rare, it gets little attention from research and government communities. The foundation has so far funded about $7 million for research projects.
The event will be held at the Army Navy Country Club in Arlington, Va.