Last Sunday the Walkway Over the Hudson was crowded with people who all had one goal in mind; to raise money to defeat Amyotrophic lateral sclerosis (ALS) a motor neuron disease commonly known as Lou Gehrig’s disease. The famed NY Yankee died from complications of the disease at the age of 37 in 1941.
All morning walkers and supporters gathered in the Haviland Road parking lot, getting ready for the 11am step-off.
Kristen Cocoman, is the President and CEO of the ALS Association of the Greater New York Chapter. Their offices are located in New York City but oversee these fundraising events in the Hudson Valley, Westchester County, the NY boroughs and in northern and central New Jersey; there are seven ALS walks in the immediate area. There are 180 walks across the country that raise about $26 million annually.
Cocoman said two years ago the drug Radicava was released to combat ALS.
“It has shown to modestly slow down the progression, but it’s only the second drug that has been approved,” she said. “Now we’re up to 80 years since Lou Gehrig was diagnosed.”
Cocoman said “since the “ice bucket challenge” five years ago, the fundraising, the progression of the research and the speed and number of research projects in the pipeline has grown exponentially.” The “challenge” involves dumping a bucket of ice water over a person’s head, whether by another individual of self-administered, to bring awareness of the disease and to encourage donations.
“Things are really moving along at a very rapid rate although it’s not fast enough. We need to be out here doing these walks, raising awareness, raising funds to serve the families in the communities that are dealing with it now until we get to that point where we have an effective treatment and a cure for this; that’s why we’re out here today,” Cocoman said.
Cocoman said her chapter contributes funding to the New York Genome Center.
“That is the hub of research that’s being done around the world,” she said. “There is research being done in all the hospitals where we have clinics; the Robert Wood Johnson University Hospital in Princeton, New Jersey, Columbia University in NYC and SUNY Stony Brook on Long Island.”
Nancy Brenner, a Care Service Coordinator with the ALS Association, focuses on the lower Hudson Valley.
“I go out and visit all of our pals in the area,” she said. “This is our day, these are my people. I love being here and supporting them.”
Dutchess County Executive Marc Molinaro and NYS Sen. Sue Serino turned out to support this year’s Walk To Defeat ALS.
Molinaro said, “for me we have a number of county employees that have been affected by ALS and one individual that we walk for each year, Beth Wright.” he said. “This is a disease that steals a lot of things from people but it doesn’t take away your fighting spirit, it doesn’t take away hope and it doesn’t take away the chance, I think, for all of us to come together to raise awareness for research and hopefully defeat it.”
Sen. Serino said these walks are important ways to raise money for research.
“We have to find a cure; it’s got to be inevitable,” she said. “As Marc said, the fight is on and you see the spirit in their eyes. What they’re doing is simply amazing. The people that come out here in wheelchairs; imagine how they feel day to day, and they’re out here every year. Their spirit is there.”
For more information go to www. alswalks.org or at the association’s website als-ny.org.