ALS Ice Bucket Challenge turns 10: Much achieved, but much work remains

Nancy Frates' son Pete was captain of every team he ever joined. And there were many. So when Pete was diagnosed with ALS at age 27 and vowed to change the trajectory of the fatal disease, she trusted that he would.

Now, it's been 10 years since his best idea for doing that and five since he died. Nancy is determined to breathe new life into his idea.

With the collaboration of The ALS Association and others, Frates is bringing back the Ice Bucket Challenge her son helped launch a decade ago. On Thursday morning, she, Pete's wife Julie and their 9-year-old daughter Lucy will join sports stars politicians and researchers to mark the anniversary at Pete's beloved Fenway Park, home of the Boston Red Sox.

That effort – in which sponsors donated to watch people doused in icy water – raised $159 million which grew, with matching funds, to $1 billion. It helped launch two approved treatments and the development of more than 80 drugs and therapies. A dozen new genes were found to be associated with the disease, which will eventually lead to yet more treatments. The number of clinics treating people with ALS, which stands for Amyotrophic Lateral Sclerosis, has doubled. And it raised global awareness about a disease, which, when Pete was diagnosed in 2012, many knew of only vaguely because it had afflicted baseball great Lou Gehrig.

But mainly, Nancy Frates said, the effort gave people with this terrible diagnosis some realistic hope.

"Nobody's survived it yet," said Frates, founder of the Pete Frates Family Foundation. But "the hope is real. It's not false hope. I know what hopelessness is. In 2012, there was no hope."

Her goal and others' is to transform ALS at least into a chronic illness ? a survivable disease, rather than a 2- to 5-year death sentence, which it remains.

"Are we where we want to be? No, but we are making huge progress," Frates told USA TODAY. "We want to celebrate that progress but also reignite people into our fight."

Ice bucket origins

The Ice Bucket Challenge provided some distraction and fun with a purpose for millions back in 2014. People all over the world could watch friends shiver for a good cause or take a freezing bucket on the head themselves.

It may have inspired Facebook to launch its donate button and choose-your-charity birthday fundraisers, which have raised more than $7 billion for a wide range of causes.

It all started when three young men, Frates, of Beverly, Massachusetts, Pat Quinn of Yonkers, New York, and Anthony Senerchia, from the nearby town of Pelham – who by rights should have been thinking about anything other than their imminent deaths – were trading messages and calls, trying to come up with fundraising ideas for their disease.

They stumbled across a reference to an ice bucket fundraiser, inspired by the tradition of dumping the contents of a Gatorade cooler on the coach after a big win. The idea was first used by a women's college basketball coach diagnosed with breast cancer. The trio of young men decided to repurpose it to raise money and awareness for ALS.

The dire circumstances of these young, vibrant men and the hilarity of the ice dumps struck a chord and a movement was born.

At the height of the viral trend, ice bucket challenges raised $115 million for The ALS Association in just six weeks.

Now, the goal is to get people who had fun with the challenge a decade ago "to share that story with your 7-year-old, who is now 17, your 12-year-old who is now 22," Nancy Frates said. "Pass the torch to them."

Attention, awareness and cash

ALS, known as Lou Gerig's disease for the Yankee slugger diagnosed at age 36, is a neurodegenerative disease that affects the motor neurons, the nerve cells that control movement.

These cells are in every muscle of the body, from the face where they help a person speak, swallow, express emotion and breathe, to the arms and legs where they enable people to walk, sit and hug a loved one, said Dr. Sabrina Paganoni, a physician-scientist at the Healey Center for ALS at Massachusetts General Hospital and the Spaulding Rehabilitation Hospital, both in Boston.

When these motor neurons can't support muscle function anymore, the muscles waste away and the person becomes paralyzed, she said.

Scientists don't fully understand what causes ALS.

Genetics account for a small fraction of ALS patients. In about 20% of families with inherited ALS, the gene at fault is called SOD1, for which there is now a treatment.

"It's a demonstration that we can effectively target the disease when we have a good understanding of the biology," Paganoni said.

But most cases can't be tracked to a relative in the family who had the disease.

The Ice Bucket Challenge was a turning point in the history of ALS research, Paganoni said, because it triggered a surge of attention leading to more funding and research. "It's only when you have a critical mass of minds and funds that you can actually make things happen," she said.

Nancy Frates knew her son's work had made a profound difference when she got a call one afternoon from her college roommate telling her to turn on the daytime soap opera they used to watch together. One of the main characters on General Hospital had been diagnosed with ALS. And he wasn't bedridden, Nancy noted. "He's living his journey."

Attention and awareness are nice, but as everyone saw during the COVID-19 pandemic, what truly brings change toward treating a disease is money. Vaccine development, which took years and years before the pandemic, came together in a matter of months in 2020 thanks to $10 billion in federal support.

"You need to mobilize resources and funds to make change and that's what the Ice Bucket Challenge did," Paganoni said.

Moving the needle

ALS carves a cruel path.

Earlier this summer Nancy Frates attended the annual ALS Association conference and was struck by how few faces she recognized. The whole generation of people Frates knew when Pete was diagnosed and throughout his disease was gone. Senerchia died in 2017, Pete in 2019, Quinn in 2020.

Calaneet Balas, CEO and president of The ALS Association, for the last six years, has had the same experience of losing so many of the patients she's met.

But, she thinks the newest figures will show progress. More people have been living five years or longer. Frates and Quinn both survived for seven; Senerchia made it 14 years. Others are living longer, too.

"Anecdotally, it seems the needle has moved. We're seeing it," Balas said.

But many are living longer at later stages of the disease, the phase where they need expensive 24-hour care.

It's not just the disease that makes ALS hard for families Balas said, but all the things that happen on the periphery ? the psychological and emotional challenges, the financial harm, the burden of having to redesign homes and reconfigure friendships and lives around the disease. Families carry those burdens long after their loved one dies, she said.

Last year, a 92-year-old man left $58 million to The ALS Association in his will. His father had died of ALS when the man was just 10 years old, around the same time Gehrig had the disease. "He's been carrying that with him for 80 years," Balas said.

Nancy Frates says she'd like to thank everyone who participated in an ice bucket challenge a decade ago. She's deeply grateful to say her son helped make a difference toward better understanding and treatment of this terrible disease ? along with the rest of his ALS team.

"We didn't do this. Everyone did this," she said. "We just asked you to join. And you did."

This article originally appeared on USA TODAY: ALS Ice Bucket Challenge turns 10: Reviewing its impact