What About My Disease?

Nov. 1, 2007 — -- Some are calling autism the "disease du jour," and its fundraising coffers have the dollars to prove it.

The Autism Society of America has seen its budget grow to $20 million, and a new advocacy group -- Autism Speaks -- raised more than $33 million in its first year of operation in 2006. It expects to raise that to $50 million this year.

The 1,000 biggest U.S. private foundations nearly doubled their autism-related giving to $2.7 million between 1998 and 2005, the New York-based Foundation Center reports.

Long ignored by the medical community, the spectrum of neurological disorders known as autism is now the cause celebre in fundraising, commanding the attention of parents, pediatricians and star-studded spokespeople.

Just this week, the American Academy of Pediatrics released two new reports to help pediatricians recognize and treat autism, recommending that screening take place at both 12 months and 18 months.

Experts cite the strength of parent lobby groups and new government diagnostics that have put the disorder at the forefront of pediatric medicine.

But other champions of childhood diseases wonder if their causes have been overshadowed by autism's success story.

"The reality is every disease organizes and lobbies for its own cause," said Lisa Yue, who founded the New Jersey-based Children's Cardiomyopathy Foundation, after two of her infant sons died of the little-known disease.

"Why they are so successful in getting publicity is that they are very well-connected," said Yue. "Because of that, they are able to get more families involved and give more voice to the disease."

Celebrities have helped raise awareness for autism in the same way that actor Michael J. Fox did for Parkinson's disease. At a fundraiser in New York City this year Toni Braxton, Matthew Broderick and Bill Cosby helped raise $1.45 million for autism research.

Former NBC Universal chairman Bob Wright and his wife, Suzanne, called on celebrity friends like Jerry Seinfeld and Paul Simon after founding Autism Speaks in 2005. After his grandson was diagnosed with the disorder, Wright used his business expertise and star connections to bring added urgency to autism research.