Last year they had the largest Long Island Walk to Defeat ALS team in history; an event hosted by a nonprofit organization that seeks to conquer Lou Gehrig's Disease, the fatal neurological illness sometimes known for the Yankee first baseman, one of its most famous victims.
This year, Cullen's Crusaders, from the Port Jefferson Station-based accounting firm Cullen & Danowski, were not able to rally quite so many people to the cause for various reasons but they still walked away with the honor of bringing the largest team to the Walk to Defeat ALS on Sept. 22 at Eisenhower Park.
They didn't come close to the estimated 411 people registered last year but the 2013 count of 125 was still impressive. It was enough to bring home a second award for most walkers. Although she was hoping for more people to show up, Team Captain Karen Wood said that Vincent Cullen's legacy is the reason why they still had such an big team.
"I think part of the momentum was due to Vinnie being such an inspirational person and impacting so many lives while he was here," she said. "He was the driving force behind so many people and so many things."
Team sizes can range from individual walkers who show up year after year to hundreds of people, as Cullen's Crusaders shows.
Mr. Cullen, who lived in East Setauket, walked in last year's event just months after receiving his fateful diagnosis. That year the team also raised an equally impressive total of over $110,000 for The ALS Association's Greater New York Chapter.
According to the organization's website, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Although most people die from the disease within three to five years, in very rare cases, people can live for many more years or even decades after a diagnosis. The famous physicist Stephen Hawking was diagnosed with ALS when he was in his early twenties. He's now over 70-years-old and still one of the greatest scientific minds in his field. That's because the disease progressively deteriorates patients physically but leaves them mentally unscathed, able to communicate through a variety of technological devices available today.
In its commitment to better the lives of those who live with Lou Gehrig's Disease, The ALS Association's Greater New York Chapter provides equipment lending services along with patient and caregiver support. It funds research into a treatment and cure and advocates in Albany and Washington D.C. for people with ALS, also known as PALS. Money raised by the Walk to Defeat ALS teams goes to support those services.
This year's Long Island Walk to Defeat ALS is expected to raise over $700,000, according to Kristen Cocoman, the chapter's Director of Marketing and Special Events. The walk attracted over 5,000 people to the event this September with over 200 teams participating. In total the organization's seven walks throughout the New York and New Jersey metro areas raised over $2 million in 2012.
This year's event - the 13th annual Walk to Defeat ALS on Long Island - was bittersweet for Cullen's Crusaders and especially for Ms. Wood. Mr. Cullen died on May 9 and another patient whom the team adopted into their fold, Kathleen Rogers, also died on Sept. 3 from ALS.
"Honestly, the day before was very difficult for me because I had down time to think and be reminded of how neither Vinnie or Kathleen are with us anymore, when just a year ago they were sharing Walk day with us," Ms. Wood said. "It’s amazing how with ALS so much can change in such a short time period."
Although the day brings back a flood of memories about Mr. Cullen, being surrounded by team members helps on walk day. Ms. Wood said you have to "suck it up and put it aside" to get through all the work it takes to organize such a big fundraising team. Being surrounded by people who know what you're going through helps.
"I just try to enjoy the day and know that I’m surrounded by people who 'get it,'" she said. "You don’t have to explain how you’re feeling to them. They’ve been through it. They know it only too well."
The team will keep going in memory of Mr. Cullen. They have incorporated and are waiting to be approved as a 501(c)(3) nonprofit so they can do more events and raise more money for The ALS Association's Greater New York Chapter throughout the year.
"We hope to be more than a walk team and raise funds for as many people as we can, however we can," said Ms. Wood. "It gets tough because you feel like you are constantly asking the same people for money. Our project now is to figure out how to reach out to more people, to share our stories and raise awareness for ALS."
According to Ms. Wood, the Walk to Defeat ALS is not only about the PALS but about bringing people together for a common cause.
"We don’t just walk for the patients but we walk for each other, and those who don’t even know yet that they need us to walk for them," she said. "We walk to raise hope that someday other people won’t have to watch their loved ones fight and lose their battle with ALS."
To learn more about The ALS Association and what they do, click here.