Ride For Life: From Montauk To Manhattan
By:Michelle Gabrielle Centamore
04/30/2008


Amyotrophic lateral sclerosis - often referred to as Lou Gehrig's disease - is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. To date, there is no known cure for the disorder, but the 11th Annual ALS Ride for Life is hoping to change that, raising awareness and funds for research. The seven-day ride will begin at the Montauk Point Lighthouse on May 4 and culminate in Manhattan on May 10, with several stops along the way.




Ride for Life was the idea of Northport resident Chris Pendergast, who was diagnosed with ALS by a local neurologist in October 1993.
"I was inspired to create the Ride for Life from my early college days of social activism that marked the Sixties," Pendergast said. "I grew up believing that individuals can indeed make a difference if they are willing to publicly fight for their cause."
When Pendergast was first diagnosed, he said that his entire world, as well as his family's, was turned upside down. "The man I was, and the life I led, was gone. ALS has forged a new Chris Pendergast," he said.
However, he added, "In many ways, I am a better man. I hate the disease and I curse the day I was diagnosed, but I thank God for the many blessings I have been given as a result."
Pendergast said his greatest concern lay with his family. "This unwelcome intrusion has been a heavy burden for them to carry," he noted. "When I pray, I always ask for strength to be given to them."
Financially, Pendergast said, ALS patients and their caregivers face huge expenses that often result when patients have to leave their home for a special facility that cares for ALS patients, a situation he said would simply shatter his family. "Currently, due to prudent finance and a good career, I have been able to pay a hefty weekly expense for a caregiver. This out-of-pocket expense has allowed me to live at home and continue my work with the Ride for Life," he explained. "Ordinarily, many my age have long been shut in at geriatric nursing facilities. The ultimate destruction of my life and my family would occur if I was forced to move into a nursing home. That is a frightening choice to have to make."
In creating Ride for Life, Pendergast said, the "ultimate dream" would be to find a cure for ALS. "Following that, I dream of restorative medical treatment so that paralyzed patients may regain function," he said. "In the short-term, I hope that we can provide better care for both the patient and their caregiver. The disease is so overwhelming and the demands so comprehensive that caregiving often collapses during [the] late stage [of the] disease." He added that "it would be wonderful if insurance, which currently does not provision for such care, would make this care available."
Participating in Ride for Life, said Pendergast, is a life-changing experience, not only for ALS patients such as himself, but for all riders and volunteers. "The decision to work for positive change becomes infectious. It filters throughout your life, causing a re-evaluation of how you live," he said.
"I think Ride for Life has changed me a lot," stated Arlene Dayboch, marketing and development manager for ALS Ride for Life. "Just by knowing Chris and all of the volunteers, you get to see the really good side of people - their generosity, financial support or the willingness to give of themselves to make sacrifices. So many people come into this office to do all different kinds of tasks and chores simply out of the goodness of their heart. It makes you believe in people again."
On May 6, around mid-afternoon, wheelchair-bound ALS patients will ride through Stony Brook University, one of the stops along the Ride for Life. SBU, the home of Long Island's only comprehensive ALS clinic, will display 6,000 pinwheels in and around the grounds of the South P Lot on the West Campus. The pinwheels represent the 6,000 individuals who died from ALS during this past year in the United States.
"This will be my third ride," said Dayboch. "You will find that in most health-related charities the advocates are survivors of the disease - we don't have any survivors. They all die, some sooner, some later, but they all die," she stated. "Because of that, it is amazing that the organization continues to exist and get the support that it needs. It is a constant challenge but we do continue."
According to Dayboch, in addition to raising money for awareness and research for a cure, Pendergast has always maintained the significance of ALS patients and their families having input into how the money raised is spent. "And that is a very important element to our organization," she said. "We have a research committee that consists of ALS patients and caregivers and they provide input and suggestions into how our fundraising money is spent."
Aside from a few paid event consultants, Dayboch said, just about everything needed to achieve Ride for Life is donated. "From the vehicles we use to transport patients to an RV used as a rolling office to the hotel rooms in the evening. Even the food that we eat on the road is either donated by a restaurant or a volunteer who makes sandwiches for us and then by another volunteer who will deliver it wherever we are," she said. "The drivers of our vehicles, as well as our public relations people, photographer, printer, etc. are all volunteers."
Registration will take place on May 4 at Hither Hills in Montauk from 7:30 a.m. to 8:30 a.m. A bus will leave to transport participants to the Montauk Lighthouse thereafter. An opening ceremony will take place at 9:15 a.m., with the ride beginning shortly afterwards.
Throughout the seven-day event, Dayboch explained, there will be several opportunities for people to participate with or support the riders. "We are walking every day and people can join us and walk with us," she said.
On May 6, for example, Ride for Life will begin at a strip mall at the corner of Pipe Stave Hollow Road and Route 25A in Miller Place at approximately 8:30 a.m. Participants will then walk towards Heritage Park for a 9:15 a.m. ceremony and sendoff. A number of representatives from the community will participate in the ceremony, Dayboch noted.
For the culmination of the ride, on May 10 participants will begin traveling on the Brooklyn side of the Brooklyn Bridge at approximately 9:15 a.m. "We usually have a lot of people participate on that day," Dayboch said, noting that there will be bag pipers to salute the attendees. A group of bicyclists - Friends of Claire - will start out from the Montauk Lighthouse that morning, ride the entire day and meet up with Ride for Life along the way. Those interested in joining the cyclists, she said, may contact Phil Gormley at 914-282-5397.
While there is no participation fee for Ride for Life, walker pledge sheets are available and money can be donated online to support the fundraiser. For more information on the 11th Annual ALS Ride for Life and details on routes, departure times and more, call 444-1292 or visit www.2008rideforlife.kintera.org.

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