What About My Disease?

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.

Well-Connected Fundraisers

"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.

Yue's own passion -- finding a better diagnostic techniques and cure for pediatric cardiomyopathy -- has struggled to get the kind of attention autism has received. The disease, which enlarges the muscle of the heart, has been most frequently associated with the sudden death of athletes.

Cardiomyopathy affects only one in 100,000 children, and the foundation has struggled to find celebrity support. Yue wrote to Ashton Kutcher, whose brother had the disease, but never got a response.

"It's harder when it's a rare disease," she said. "The pot is only so big and it takes away from other diseases and the potential for more cures."

Autism strikes far more children -- one in 150 in the general population and one in 94 in boys, according to the Centers for Disease Control and Prevention. Only mental retardation and learning disabilities take a greater toll on children's health.

Autism advocates, while well-intentioned, cull more research dollars. "I won't say it takes away from other disorders, but [they] somehow influence Congress and have a better opportunity to see that their interests are funded," said Marshalyn Yeargin-Allsopp, pediatrician and epidemiologist for the CDC.

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