Ice bucket challenge to raise money to fight ALS reaches milestone

High on the list of hot summer trends in 2014 was a novel way to cool down — the ice bucket challenge — a worldwide viral sensation that led Long Islanders like Westhampton Beach resident Corinne Van Hoesen and her children to roll their cameras and dump frigid water on their heads.

It was all for fun and a good cause, Van Hoesen remembers 10 summers later.

Her family and countless others across Long Island and the country performed the ritual as part of an effort to raise money for the fight against ALS — amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease.  And now Van Hoesen is planning another round of dousing — with more personal stakes.

“It was just what was on social media and everyone was doing it,” she said. “Now fast forward 10 years, my best friend in the world gets diagnosed with this awful disease.”

Advocates say the 10-year-old icy viral phenomenon — which raised more than $115 million for the ALS Association, a national nonprofit that has battled ALS for nearly 40 years, and more than $200 million globally — bolstered ALS awareness, research and local services for patients. The sensation galvanized thousands of Long Islanders, especially high school students, teachers and sports teams. Those who accepted the challenge recorded themselves dumping buckets of ice water over their heads solo in their backyards, or united their communities for mass splashes. 

Christine Pendergast, who started the nonprofit ALS Ride For Life in 1997 alongside her husband, Christopher, who died after a rare long battle with ALS in 2020, inspired more than 500 Long Islanders to take the ice bucket challenge together in Heritage Park in Mount Sinai on Aug. 26, 2014.

“It was a phenomenon that I don’t know would ever be recreated,” she said of ice bucket summer. “It’s like Woodstock … You had to be there; you had to experience the initial ice bucket challenge to understand how it just took off and everyone was doing it.”

More awareness, more money

Kristen Cocoman, the chief executive of the nonprofit ALS United Greater New York, formerly a local chapter of the ALS Association, said the ice bucket challenge's legacy could be summed up in one word: “awareness.”

“Everyone talks about the millions of dollars that were raised through the ice bucket challenge,” she said. “But the awareness piece of it was just priceless.”

But those millions came in handy. Cocoman said her organization raked in approximately $5 million during the summer of the ice bucket challenge — the equivalent of an entire year’s worth of fundraising — allowing it to bolster its services, which includes staffing multidisciplinary clinics, hosting support groups and distributing grants for home care and equipment.

“It can cost roughly about $250,000 during the later stages of the disease to care for somebody that’s living with ALS,” Cocoman said. “Families go into financial ruin because of ALS,” regardless of insurance status.

While the ice bucket’s fever pitch has long cooled, its spirit has lingered on Long Island. School districts across the Island host walks, bake sales and other fundraising events for ALS Ride For Life that collect $80,000 to $100,000 each year, according to executive director Marilyn Sloan. Last year, Romina Lopez, then a graduating senior at Center Moriches High School, went old school and organized an ice bucket challenge that raised $4,000 in honor of her father, Ramon Lopez-Carillo, who died from ALS when she was 7.

“It was really powerful how everyone in the Center Moriches community came together,” Lopez, now 18, said. “I didn’t think it would be as big as it was … My goal was just to bring it back so it could be something we do every school year.”

Fundraisers like Lopez’s mean nonprofits like Pendergast’s can help ALS patients like Blythe Fickenwirth, Van Hoesen’s best friend since elementary school, who last September learned she is one of more than 31,000 Americans the federal Centers for Disease Control and Prevention says is battling ALS. The disease is typically diagnosed in people ages 55-75, and the typical prognosis is living two to five years after symptoms begin to develop, according to the CDC.

Van Hoesen said Fickenwirth was not given a timeline. Instead, her doctor told her to “get your affairs in order. Spend time with family and friends.” Despite taking an Food and Drug Administration-approved treatment, her condition is still worsening, Van Hoesen said. 

Through a communication board and Van Hoesen, Fickenwirth said that when she received her prognosis, she felt like “my world ended.” After living with her longtime boyfriend for nearly 20 years in a two-story house in Brentwood, Fickenwirth had to move into a one-story Mastic home with her mother, her adult son and her brother who has Down syndrome. After a tumultuous 11 months, Fickenwirth said she feels “so, so emotional. I don’t know what my future will be.”

To ease her financial burdens, ALS Ride For Life gifted Fickenwirth two grants — $1,500 for legal fees incurred applying for Medicaid and sorting other affairs, and $3,500 for in-home health care, Van Hoesen said.

“These are the things that have an immediate and positive effect on an ALS family,” Pendergast said. “While our mission started out with awareness … the reality is we can’t provide these services to help a patient tomorrow unless we have the funds to do so.”

Still icing, still waiting

Before the ice bucket challenge only one treatment existed for ALS: Rilutek, which the FDA approved in 1995. The agency has since approved two new treatments — Radicava in 2017 and Qalsody in 2023. The National Institutes of Health currently spends twice as much on ALS research as it did five years ago. 

“It brought pharmaceutical companies into the space,” Cocoman said of the viral sensation. “It resulted in research breakthroughs … biomarkers in genes were identified.”

Current treatments can extend an ALS patient’s survival “by a few months,” Cocoman said.

It may not sound like much, but in context of an ALS prognosis a few months extends a lifetime.

“Maybe in three months, you’ll see your grandchild be born … You’ll see your child graduate high school,” Pendergast said. 

Pendergast described the ice bucket challenge as “a real boost in the arm” for research, but like so many loved ones of ALS patients, longs for a cure. She said she “was disappointed” that the global effort did not lead to a “really definitive and groundbreaking” discovery.

Ten years after she took up the ice bucket challenge during a family beach outing, Van Hoesen will rely on the time-tested fundraiser to help her friend. On Aug. 18 she will host an ice bucket challenge at 36 Liberty St. in Westhampton Beach that will raise money for various organizations, including ALS United Greater New York and ALS Ride For Life, as well as for equipment Fickenwirth needs, including a Hoyer lift.

“We need things that cost more money than we can handle,” Van Hoesen said.

Even though awareness, funding and research have grown over 10 years, there is still no cure for ALS.

“A cure is the ultimate goal, of course,” Cocoman said. Until then, she hopes research will allow patients to “live with the disease while we’re trying to fully cure it.”