Local ALS patients take the Ice Bucket Challenge

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 water over their heads — 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.

Facebook news feeds everywhere are overflowing with videos of people dumping buckets of ice and cold water over their heads immediately after challenging several other people to follow suit. It’s almost hard to find someone who hasn’t taken the challenge.

Tomorrow evening, the board of governors of the Riverhead Moose Lodge will rise to the challenge, with an ice-water dousing planned for 6 p.m., according to Riverhead Moose governor-administrator Vinny Passantino. The Riverhead Moose plans to challenge two other lodges in Suffolk — as well as the five members of the Riverhead Town Board.

“Bring it on,” Riverhead Town Supervisor Sean Walter said he told Passantino when the lodge governor called him today. Walter said he hadn’t yet spoken to the council members but thought they’d be in. He said he hopes to set it up for Thursday at Town Hall.

“I’m donating to ALS in honor of Chris Pendergast,” Walter said, referring to the 65-year-old former school teacher diagnosed with ALS in 1993 who founded the ALS Ride for Life. A Mercy High School alumnus, Pendergast stops at McGann-Mercy, Riverhead High and Riverhead Town Hall each year on his ride from eastern Suffolk to Manhattan. He has completed 17 annual treks to raise funds and awareness for ALS.

Pendergast, who has survived against the odds for 21 years, battling a fatal disease that typically kills within two or three years of diagnosis, took the challenge himself yesterday.

“Ice should stand for ‘I challenge everybody,'” Pendergast said before having the ice water dumped on his head. He challenged numerous people, including his Ride for Life “riding buddies,” the CEO of Stony Brook University Hospital and former major league pitcher David Cone, the honorary chairman of the ALS Ride for Life.  See video here.

The rare and deadly Amyotrophic Lateral Sclerosis — commonly known as Lou Gehrig’s Disease, named for the Yankee great who died at age 37 from the illness — attacks the nerve cells in the brain and spinal cord that control muscle movement. Nerve cells waste away or die, and can no longer send messages to muscles. Eventually the victim’s muscles weaken and he can no longer move his arms, legs, and body. When the muscles in the chest area stop working, it becomes hard or impossible for him to breathe on his own. Most die of respiratory failure. Fewer than 10 percent of ALS patients live more than five years.

People across the North Fork have taken the challenge for Gerard Hayden, chef and co-owner of the North Fork Table restaurant in Southold. Hayden 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 also took the challenge last week. See video.

“The Ice Bucket Challenges have been the best thing to happen to ALS awareness since Lou Gehrig’s speech,” Hayden said in an interview today.

July marked 75 years since the baseball great gave his farewell speech after being diagnosed with ALS.

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, as the challenge went viral, with millions of people challenging others to soak themselves with ice within 24 hours or pay $100 to the ALS Association, the organization has seen unprecedented donations. Many who take the challenge also donate funds to the ALS 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.

“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.

Suffolk County Executive Steve Bellone took the plunge on Sunday. He was nominated to join the fundraising effort by Town of Islip Supervisor Tom Croci. Bellone said he also wrote a $100 check to the association.
“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.

Bellone challenged Congressman Steve Israel, Southampton Town Supervisor Anna Throne-Holst and the entire Stony Brook University football team to grab a bucket.