What About My Disease?

The battle to fund research for diseases pits advocates against advocates.

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.

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.

Epilepsy Efforts

While autism is getting all the attention these days, pediatricians say another serious neurological disorder has a lower publicity profile but occurs in similar frequencies among children -- epilepsy and seizures.

The Epilepsy Foundation does not pull out statistics for older children and young adults, but report that about one-half of 1 percent of children are diagnosed under the age of 15. Autism statistics -- which include young adults with Asperger's syndrome -- show less than 1 percent of all children have the disorder.

Epilepsy is the third most common neurological disorder in the United States after Alzheimer's disease and stroke and is equal in prevalence to cerebral palsy, multiple sclerosis and Parkinson's disease combined.

Like autism, its diagnosis can be elusive -- unless a child has a seizure right in the doctor's office -- and the risk of sudden death is 24 times higher than in the general population. An estimated 25,000 to 50,000 will die this year of seizures and related causes.

The foundation raises $80 million a year, and increased autism campaigns have not undermined its fundraising efforts, according to Eric Hargis, president and CEO.

Autism advocacy "helps raise awareness of issues around health and that helps all of us," said Hargis. "Our mission is to encourage people with epilepsy to speak out and let their friends and high-profile colleagues know to do likewise."

Hargis said his foundation has learned a lot from the autism groups. "When celebrities are involved, they make a huge difference."

Greg Grunberg as Spokesman

The foundation has recently found its own celebrity spokesman -- Greg Grunberg of the television shows "Alias" and "Heroes." His son Jake was diagnosed with pediatric epilepsy in 2003 after Grunberg and his wife, Elizabeth, noticed his peculiar staring spells.

Grunberg enlisted the support of Hollywood friends Jennifer Garner and Jason Bateman to donate original finger paintings to be auctioned off for epilepsy research.

"If you're talking about other neurological organizations like autism, we see ourselves as colleagues and partners," said Hargis. "Yes, we are out there to get out our message, but not to battle it out for public consciousness."

But other groups say medical charities are in fact battling it out of research dollars at the National Institutes of Health.

"When these resources are expanding, there has been room for most of the participants in the process to feel that they are winning," according to an August article in Nature magazine. "Now that the budget of the largest research agency in the world is effectively frozen, there are likely to be more losers."

"We are lacking vision and leadership that leads us on a scientific basis," said Sharon Terry, president and CEO of the Genetic Alliance, which supports genetic advocacy. "We don't have somebody sitting down and saying not just my disease, but this disease makes the most sense."

What the nation needs, said Terry, is a coordinated and cohesive system of allocating research money.

"It's easier in a way as a nation to grab on to celebrities and stories," said Terry, "than to understand how science solves diseases for a nation."