Jamesport girl inspires restaurant staff to take the Ice Bucket Challenge for ALS awareness

The staff of Love Lane Kitchen will be soaking themselves for a good cause Wednesday night as they take on the Ice Bucket Challenge.

Over the last two weeks, the Ice Bucket Challenge has taken social media by storm, with millions of people challenging others to soak themselves with ice — or pay $100 to the ALS Association.

The goal is to raise funding, and awareness, about ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease.

Johanna Benthal, of Jamesport, who will turn 18 tomorrow, asked the entire staff of Love Lane Kitchen to take the challenge. Her goal, she said, is “to raise awareness for ALS in honor of my friend Gerard Hayden and A Love Shared. I did the #icebucketchallenge! And I’m challenging the staff of Love Lane Kitchen to do it along with me! #LLKforALS,” she wrote on her Facebook page.

Hayden, 49, owner of the North Fork Table, was diagnosed with ALS four years ago.

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 and 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.

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.

Benthal said she and her brother Dave decided to organize Wednesday’s event because of Hayden’s courage. Dave Benthal, a manager at Love Lane Kitchen, is good friends with Hayden.

“Gerry is a good friend of mine, as well, and of my family,” Johanna said. “He has just been an inspiration to me.”

Johanna has faced her own challenges: She was diagnosed at three months old with a rare genetic neurological disease that causes tumors to grow in her brain.

“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,” she said.

Dave Benthal, 26, said he was motivated to organize the Ice Bucket Challenge at Love Lane Kitchen’s staff party at Veterans Beach in Mattituck because Hayden has inspired so many on his journey, and through A Love Shared.

“Johanna immediately wanted to do it. She was very enthusiastic,” he said. “She wanted to nominate the whole Love Lane Kitchen staff.”

According to the ALS Association, well-known names including Ethel Kennedy and Justin Timberlake have taken part, or challenged others to do the same or donate funds to fight ALS within 24 hours.

Between July 29 and Aug. 12, the ALS Association has garnered $4 million in donations, compared to $1.12 million during the same time period last year.

“We have never seen anything like this in the history of the disease,” said Barbara Newhouse, President and CEO of the ALS Association. “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.”

Currently, the ALS stated in a release, there is only one drug approved by the U.S. Food and Drug Administration to treat ALS, which 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.