'Idol' shines spotlight on disorder

CHICAGO -- When a 26-year-old Chicagoan recently moved to the next round of "American Idol," she was furthering more than her musical ambitions.

The popular show recently opened its seventh season featuring a video clip of Angela Martin and her 8-year-old daughter, who has Rett syndrome, raising awareness about a little-known genetic disorder.

"The e-mail started flying in as soon as the show was over," said Chuck Curley, director of the International Rett Syndrome Research Foundation and father of a 12-year-old with the condition. "This is a huge moment for us."

No one knows how far Martin will go in the competition, but advocates hope that such national exposure can do for the disorder what Michael J. Fox did for Parkinson's disease, Christopher Reeve for spinal cord injuries and Katie Couric for colon cancer.

For the 6,000 or so "orphan diseases" in the United States, such awareness is a key way to funnel more money into research.

In the two days after the Jan. 15 premiere, the Rett syndrome website notched 10,000 hits, 1,000 more than in all of December, Curley said. "We don't think that's a coincidence."

For Marcia Adamski of Midlothian, Ill., just hearing the name was validation.

Martin's tuneful rendition of "Signed, Sealed, Delivered" was strong enough to move her to the next round in Hollywood, which airs Feb. 13.

If fate smiles on the aspiring singer and she survives all the way to the finals in May, she will get to educate -- as well as entertain -- about 33 million viewers weekly. (Average price of a 30-second commercial: $875,000.)

"Not a chance we could afford to reach people like this," said Curley.

Rett syndrome strikes girls almost exclusively, affecting about one of every 10,000. Toddlers develop normally until 6 to 18 months, when they start regressing, losing speech and motor skills. Eventually, they become profoundly disabled, requiring assistance in virtually every aspect of daily life, from feeding to using the toilet. There is no cure.

The illness, caused by a gene mutation, followed the usual course for Martin's daughter, Jessica. "Our entire family was in denial," said a relative.

"It's not about fame for me. It's about getting her the best care, the best therapist. The doctors told me that my daughter was never going to walk or talk. I'm going to get that for her," said the South Side resident.

It may not be about fame, but there's no question that a star-studded spokeswoman can turn an obscure ailment into a fashionable cause.

Autism is a prime example. Once ignored by the medical community, the Autism Society has seen its annual budget grow to $20 million. And a new advocacy organization -- Autism Speaks, which sprung up in 2005 -- expects to raise $50 million this year.

The upstart group was founded by NBC Universal chairman Bob Wright and his wife, Suzanne, to help their grandson, which may explain why Jerry Seinfeld and Paul Simon have been recruited for fundraising.

Finding a celebrity has become an especially popular route for maladies without ribbons or marathons, said Mary Dunkle of the National Organization for Rare Disorders. (The government defines "rare" as afflicting fewer than 200,000 Americans.)

Still, a household name is no guarantee, Dunkle said. "It doesn't really accomplish much if the celebrity doesn't have an obvious reason for speaking out," such as a loved one.

"And they can be high-maintenance for an organization," she added.

A personal connection has often been the catalyst for research, explained Dr. Peter J. Smith, a developmental pediatrician at the University of Chicago. He cited President John Kennedy for focusing attention on mental retardation in the early 1960s because of his sister Rosemary's diagnosis. (Another sister, Eunice Kennedy Shriver, started the Special Olympics.)

Smith doesn't see the increased "American Idol" publicity leading to significant medical breakthroughs, at least not in our lifetime.

But the spotlight can improve quality of life with better-paid personal-care assistants, as well as legal and educational services, he said. "These families need help ... and they need it right now."