April 26, 2006
By car, the ride from Manhattan to Montauk is a three-hour blur of bridges, tunnels, strip malls, and undistinguished stretches of highway.
|Christopher Pendergast will be participating in his ninth Ride for Life this year, an event he founded in 1998 to raise awareness about ALS.
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For the 23 people with the fatal neurological disease ALS who will make the same trip by wheelchair as part of the ninth annual Ride For Life, the meandering 10-day journey is full of future hopes, difficult realities, and reminders of past loss.
"Every ride I reflect on who I used to be with and those I will lose next year," said Christopher Pendergast, the founder of the Ride and an ALS patient. Though sad truths color the experience, "without a single exception, everyone has found the Ride to be one of the best experiences of their lives," he added.
After a ceremony on the aircraft carrier The Intrepid in Manhattan this Friday, the ALS patients and their supporters will head east, pausing at schools, firehouses, and local businesses across Long Island in an effort to raise money and awareness about the devastating disease Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease. The Ride will stop at Tuckahoe School and Bridgehampton and East Hampton High School on May 6, and at East Hampton Middle School and Hither Hills State Park before finishing at the Montauk Village Green on May 7.
Pendergast, who taught at Northport Elementary School for nearly 20 years, was diagnosed with ALS in 1993. The Ride for Life was born out of his desire to find a cure for the disease while also trying to improve the present realities of people diagnosed with ALS. "You can be part of the problem or part of the solution," Pendergast said. "If I'm not willing to do this, I guess I would be part of the problem. And I'm not willing to perpetuate this terrible, devastating disease.
"Since we cannot fight this disease in the classical sense, we need to fight it in other ways."
ALS attacks the nerve cells that control voluntary muscle movements, rendering a person unable to walk, move, and, eventually, speak. Approximately 30,000 people in the United States have the disease and 5000 new cases are diagnosed each year. Those with ALS — the onset generally occurs between the ages of 40 and 60 — usually die within three to five years of diagnosis.
Research into treatment and a possible cure, said Pendergast, is "grossly under-funded by the NIH [National Institute of Health] and the resulting lack of research has to be taken up by the private sector." Private organizations such as the Muscular Dystrophy Association and the ALS Association are examining the possibility of using gene or stem cell therapies to treat the disease, two "tremendously optimistic avenues of research," according to Pendergast.
The Ride For Life raised $295,000 in 2005 and is expected to hit the $2 million mark in total fundraising this year. Fifty percent of the proceeds go towards research, and 10% goes to education and public awareness. The remaining 40% goes to patient support, including grants for nursing assistance, vans for wheelchair-bound patients, and grants to help terminally ill patients resolve legal and end-of-life issues.
Despite the difficulties presented by spending long stretches on the road in a wheelchair, Marc Scharest of Southampton will participate in the Ride for the fourth time. "When you're in a wheelchair, it is very difficult to feel like you're doing something that helps. The Ride For Life helps to do that," said Scharest, who has an unknown disease whose symptoms are similar to ALS.
Another veteran is David Deutsch, a 38 year-old former teacher with ALS. On the Ride, he said, "there is a wonderful feeling of camaraderie. You realize that you are not in this alone; it's a very emotional experience."
Many students and children have supported the Ride in years past, and this year will be no different. "The amount of kids that work with us is incredible," Pendergast said. "They are always like a breath of fresh air." Pendergast estimated that he spoke to 10,000 schoolchildren last year, delivering a message of encouragement about overcoming challenges.
The Ride ends in a somber moment of reminiscence and a candlelight ceremony. An ecumenical memorial service will be held at St. Therese of Lisieux church in Montauk at 5 p.m. on May 7. "It is a poignant reminder of exactly how devastating the disease is," Deutsch said.
Pendergast said that he was very proud of the successes brought about by The Ride for Life. "I was an ordinary Joe, an elementary school teacher, and with a little bit of luck and good health, we have raised over $2 million, over kitchen tables and school desks," he said.
But his greatest goal, a cure or promising treatment for ALS, remains unrealized. "I don't want to spend one more day on the road," he said. "I want to be on the beach with my family. I want to be in the garden or at a ballgame with my kids. That's what I want."
For more information about The Ride For Life or how to donate, visit rideforlife.com. More information about David Deutsch can be found at www.savedavenow.com.