What About My Disease?

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."

  • 1
  • |
  • 2
Join the Discussion
blog comments powered by Disqus
You Might Also Like...