Ride For Life: ALS featured on NBC's Today

May 14, 2005

NEW YORK -- Claire Collier prayed that she had cancer.

She prayed that the involuntary twitches in her arms and legs, the unprompted and painful Charlie horses, were the result of a tumor.

But in October 2003, the Stamford resident and mother of three was diagnosed with amyotrophic lateral sclerosis, or ALS, commonly known as Lou Gehrig's disease.

ALS is a progressive and fatal neurodegenerative disease that attacks the nerve cells controlling voluntary muscles. Patients eventually lose their strength and ability to move or breathe. Most patients live for about two to three years after diagnosis. There is no known cure.

In January 2004, Collier applied for Social Security disability benefits but was turned down because she did not have enough work credits. By law, benefits are only given to those who have worked five of the last 10 years. Collier, 42, felt penalized for being a stay-at-home mom.

"I was so angry that day," she said. "I had not cried at that point. I just burst."

Yesterday morning, Collier's story was featured on NBC's "Today" morning news show as part of the kickoff for the 8th annual Ride for Life, a nonprofit organization formed in 1998 to raise awareness of the disease and funds for a cure. ALS patients will ride their electric wheelchairs about 140 miles from New York City to Montauk, N.Y. by May 22.

Yesterday morning, riders traveled from the flight deck of Manhattan's Intrepid Sea, Air and Space Museum on the Hudson River to Yankee Stadium in the Bronx.

The kickoff event included a ceremony honoring Gulf War veterans who lost their lives to ALS and remarks from Ride for Life founder and ALS patient Christopher Pendergast, honorary chairman and former Yankees and Mets pitcher David Cone and Dr. Hiroshi Mitsumoto, medical director of the Eleanor and Lou Gehrig MDA/ALS Research Center.

The "Today" show filmed Collier at her Stamford home before broadcasting the live segment yesterday morning.

Once an avid athlete, she stopped using the stairs in September. The Colliers have converted their living room and dining area into a bedroom and handicapped bathroom.

The NBC show also accompanied Collier to Newtown, where she participates in Pegasus Therapeutic Riding. She needs assistance to mount it, but "as soon as I get on the horse, I'm empowered," she said.

Collier made her third and final appeal to receive Social Security at appellate court in New Haven three weeks ago. Her appeal was denied.

Undeterred, Collier spent Wednesday meeting with Connecticut Democratic Sens. Joseph Lieberman and Christopher Dodd and U.S. Rep. Christopher Shays, R-Bridgeport, on Capitol Hill with the Milford chapter of the ALS Association.

"They received us very well," she said.

Collier's family and friends started the Friends of Claire Foundation in March 2004 to raise awareness, fund research and change policy. The group is trying to assemble about 30 participants to ride the final leg of the Ride for Life from Stonybrook, N.Y. to Montauk. It is a journey of about 80 miles.

Irish Benson, 41, a Friends of Claire committee member and longtime friend of Collier, said the organization has raised about $500,000 since its inception.

"Who would have thought that we'd be on Capitol Hill?" she said. It's because "of the power of the people and the power of her spirit," she said.

Just an hour after Collier's story was broadcast on the show, the group was fielding e-mails from viewers who wanted to donate, she said.

"She touches so many people."

The Friends of Claire will hold its second annual dinner dance on June 16 at the Italian Center in Stamford. Proceeds will be used by the organization and by the Collier family to cover extensive medical costs.

"It's been an amazingly positive experience," said her brother, Phil Gormley, 45, of Rye, N.Y. "She keeps us going."

Marlene Fraehmke, a 40-year-old resident of New Providence, N.J. met Collier through e-mail. Fraehmke was diagnosed with ALS in April 2004. She contacted Collier because she "just wanted to talk to someone" in the same situation. .

The Social Security regulation "is absolutely archaic," she told Collier yesterday as the two chatted on the deck of the Intrepid.

"I take each day as it comes," Fraehmke, who uses an electric wheelchair, said. "I'm kind of ignoring the disease."

Yesterday, she planned to ride the first leg of the Ride for Life, just as she did last year.

"It's nice being with people who understand,' she said. "It's wonderful but it's hard."

Although research on ALS is increasing, Collier may not live to see the cure.

"She doesn't look at it that way," Benson said. "As long as she leaves a legacy."