Everyone’s doing it: The Ice Bucket Challenge is red hot right now, blazing across social media with thousands of videos depicting everyone from Lady Gaga to someone’s grandpa dumping buckets of ice over their head — all to help raise funds and awareness about ALS.
Since its inception on July 29, the phenomenon has raised $15.6 million in donations to the ALS Association, according to the organization’s website.
On the North Fork, everyone from Noah’s chef Noah Schwartz in Greenport to staffers at Love Lane Kitchen, and an enthusiastic sea of friends, colleagues and supporters has taken the challenge for Gerard Hayden, chef and co-owner of the North Fork Table, who was diagnosed with ALS in 2010.
The award-winning chef was faced with a grim reality when he lost the use of his hands and was no longer able to work in the kitchen; he is also confined to a wheelchair and must use a machine to breathe.
Hayden, however, refused to give in to despair. In fact, Hayden challenged his wife and co-owner of the North Fork Table, Claudia Fleming, as well as celebrities Pearl Jam, Vince Vaughn and Owen Wilson, to take the challenge — and took the Ice Bucket challenge himself.
“The Ice Bucket Challenges have been the best thing to happen to ALS awareness since Lou Gehrig’s speech,” he told SoutholdLOCAL Monday.
July marked 75 years since the baseball great gave his farewell speech after being diagnosed with ALS.
In recent years, Hayden also founded A Love Shared, “a collaborative effort between North Fork Table and Inn, Long Island chefs, farmers and businesses to raise money and awareness for ALS,” according to the group’s Facebook page.
But behind the social media whirlwind of people from all walks of life laughing as they take the ice-soaked challenge, the reality of living with ALS is heartbreaking.
“Day to day life is very difficult,” Hayden said. “Things I can no longer do by myself include brushing my teeth, taking a shower, going to the bathroom, dressing, eating, drinking, walking or breathing.”
Asked how he feels about a disease that has stolen so much, Hayden is candid. “Frustrated. Sad. Angry. Helpless,” he said. “But I don’t like feeling sorry for myself, so I focus on trying to help to raise awareness and money for research.”
And, with Lou Gehrig not even a household name today, the Ice Bucket Challenge has shone a much needed spotlight on a disease he has described as “cruel”.
Over the last two weeks, the Ice Bucket Challenge has taken the world by storm, with millions of people challenging others to soak themselves with ice within 24 hours — or pay $100 to the ALS Association.
Many who take the challenge also donate funds to the ALS Association.
According to the ALS Association, well-known names including Ethel Kennedy and Justin Timberlake have taken part, or challenged other A-list celebrities to do the same.
Between July 29 and Monday, donations pouring in to the ALS Association have been unprecedented — with $11 million of the $15.6 million coming in during the last week alone — compared to $1.8 million during the same time period last year, according to the association’s website; the donations have come from existing donors and 307,598 new donors to the association.
“We have never seen anything like this in the history of the disease,” Barbara Newhouse, president and CEO of the ALS Association said in a statement. “We couldn’t be more thrilled with the level of compassion, generosity and sense of humor that people are exhibiting as they take part in this impactful viral initiative.”
Raising awareness, she added, is critical. “While the monetary donations are absolutely incredible,” said Newhouse, “the visibility that this disease is getting as a result of the challenge is truly invaluable. People who have never before heard of ALS are now engaged in the fight to find treatments and a cure for ALS.”
The Ice Bucket Challenge was started by athlete Pete Frates, a former captain of the baseball team at Boston College, who was diagnosed with ALS in 2012 — but the concept soon went viral, as the challenge inspired young and old, rich and the everyman, and those facing fierce challenges of their own.
Jamesport’s Johanna Benthal, 18, who was diagnosed at three months old with a rare genetic neurological disease that causes tumors to grow in her brain, took the challenge last week. “Meeting Gerry, he’s just been a big really inspiration to me and to my family. He’s really made a big impact on my life. He taught me to not give up.”
Currently, the ALS stated in a release, there is only one drug approved by the U.S. Food and Drug Administration to treat ALS, and it only extends survival by two to three months. ALS is 100 percent fatal. In addition to losing control of voluntary muscle movement, people with the disease progressively lose their ability to eat, speak, walk, and, eventually, breathe.
“With more people aware and more people engaged in the fight against ALS, we are poised to work collaboratively with not only other ALS organizations, but also with pharmaceutical companies and academia to expedite new treatments for people impacted by the disease,” Newhouse said.
Locally, businesses across the North Fork and Riverhead, as well as elected officials, including Suffolk County Executive Steve Bellone, have happily taken the challenge. Bellone, dressed in shorts a T-shirt and in his yard with his kids, took the plunge on Sunday.
He was nominated to join the fundraising effort by Town of Islip Supervisor Tom Croci.
Thousands of people, including such celebrities as Bill Gates, Eddie Vedder, Oprah Winfrey and Jimmy Fallon, have had buckets of icy water dumped on them in a bid to raise funds for the ALS Association, Bellone, who also wrote $100 check to the organization, said.
“We all can’t lose sight of the fact that this campaign has made a tremendous impact toward funding research, providing patient services and promoting awareness about ALS,” Bellone said. “The ALS Association reports a 1,000 percent spike in donations since the campaign started and I am proud to also contribute to the cause.”
Bellone challenged Congressman Steve Israel, Southampton Town Supervisor Anna Throne-Holst and the entire Stony Brook University football team to grab a bucket.
Meanwhile, despite the ravages of ALS, Hayden has remained infused with hope and the indomitable spirit that has made him a hero among the scores who’ve stepped up to take the Ice Bucket Challenge in his name.
Back in January, Hayden had a dream that he believes was a precursor to the amazing outpouring of support for ALS he’s witnessed over the past weeks.
“I had a dream last night about a friend,” he wrote on Facebook. “I was walking through a grand park; all the streets were luminous. As I came into the most beautiful part of the park the lights started to dim, with every step I took the beauty was taken away from me a the lights went lower and the park became black. In a flash before my eyes a wire had broken away from a light and started spitting sparks and flashes of light. I was still stopped by the darkness that surrounded me, helpless but struggling to get close to this light to help me find my way. The wild wire is a metaphor. It represents the life that is still within me and the life that I so enjoy with this world.”
