Last February, Vinnie Cullen had to make a grim announcement to the employees at his Port Jefferson Station accounting firm, Cullen & Danowski. He told his staff that he’d been diagnosed with Amyotrophic Lateral Sclerosis (ALS), a fatal neurological disease.
ALS is also sometimes referred to as Lou Gehrig’s Disease, after the Yankee player whose name became synonymous with the illness after his famous retirement speech.
Cullen, who is from East Setauket where he lives with his wife and two younger of his four children, began noticing symptoms last October. The onset of the particular form of the disease that he was diagnosed with, known as “Bulbar ALS,” did not present in the same way as other forms.
“Initially he did not have the problems with his limbs as typical,” said Karen Wood, Cullen’s executive assistant who has been with the company for 15-years. “Speech was affected first.”
According to The ALS Association, a national nonprofit with local chapters that work with ALS patients providing clinical care and other services, Bulbar ALS is “the type in which onset symptoms are in the facial muscles, speech and swallowing.”
Cullen is still working in the office and still at Stony Brook University where he is an adjunct professor teaching business classes. Cutting back on work even after his diagnosis was not an option.
Inspired by walkathons that members of the firm had been involved with in the past, Wood started searching around for something that employees could get involved with to support the ALS community in honor of Cullen.
“When I found out that Vinnie was sick I thought we should walk for something close to us,” she said. “I went online and found the Walk to Defeat ALS on Long Island.”
Originally, Wood thought about 50 people would join a team and they could raise $5,000 or so for the cause.
“It kind of snowballed,” she said.
To date, the team’s fundraising page shows that they have more than 400 walkers on the team (called “Cullen’s Crusaders”) and they’ve raised more than $111,000.
And the Walk to Defeat ALS is still two days away.
Wood said that before the team’s success mushroomed, she had gone to Cullen to ask if he’d mind her starting a fundraiser for The ALS Association.
“Vinnie is a very private person but agreed if it was to help others and not just himself,” she said.
The emails and letters she sent out ended up being helpful in two ways: It got the facts out to clients and associates about Cullen’s diagnosis and also helped inspire people to action.
“The response is just amazing,” she said. “People are so torn up when they hear it. This is their way of helping.”
On Saturday, Cullen’s Crusaders will be at the Walk to Defeat ALS in Eisenhower Park in East Meadow in force. Click here for more information about the company’s walk team.
Editor's Note: The author of this article is a volunteer at The ALS Association Greater New York Chapter, a former employee and frequently works with the organization to help improve its online presence.