To celebrate the 10th anniversary of the ALS Ice Bucket Challenge, ALS advocate John Russo, who has lived with the disease for more than 11 years, is offering to match up to $25,000 of donations to the ALS Therapy Development Institute (ALS TDI). Read on to learn more about John's story and donate here to take advantage of John's $25,000 match
When John Russo recorded his first ALS Ice Bucket Challenge video, in August 2014, he had been diagnosed with ALS for a little more than a year. John, a former healthcare executive who lives in Southampton Township, NJ, had already begun raising money for local ALS organizations in his community. When a friend told him about a new fundraising challenge that was just starting to gain traction on social media, he knew that he wanted to be a part of it.
John and his wife, Loretta, joined others from the ALS community who were all recording their videos at a local golf course. They called out their nephew, his girlfriend, and their dog to take the challenge next. Then, sitting together in a chair on the green with Loretta in his lap, his friends dumped the customary buckets of ice-cold water over their heads.
That day, John says he had no idea what the ALS Ice Bucket Challenge would become. Soon he began to see video after video of people from throughout his life – including some he’d lost touch with for years – pop up on social media asking for donations to ALS organization.
“For a newly diagnosed person, it was really uplifting to see the public rally around this cause,” he says. “I was just amazed at the amount of coverage the Ice Bucket Challenge got on local and national news programs. Being a part of it gave me a lot of hope. Not only that people cared, but that people wanted to help. To do something about ALS and ending the disease.”
In the years since then, John has dedicated himself to ALS advocacy and fundraising, supporting organizations, including the ALS Therapy Development Institute (ALS TDI). He estimates that, in this time, he and Loretta have raised more than $400,000 for a variety of ALS causes. Additionally, he’s lobbied for legislation to support people with ALS and fund research in Washington and served as a consumer reviewer for the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) for ALS.
It was earlier this year, on a call with other ALS advocates, that the idea of how to celebrate the 10-year anniversary of his first IBC came to him. While discussing the milestone, he and others on the call shared their original IBC videos, including some from people with ALS who took the Challenge before they had been diagnosed. Looking at his video 10 years later – after 10 years of ALS progression – he realized that he had a powerful opportunity.
“That got me thinking – I look pretty good in that video,” he says. “I was even able to stand up afterward and walk a few steps. I thought it would be interesting for people to see what ALS looks like ten years later. So, we specifically did this again so that people can see the difference and the toll it takes on a person's abilities.”
The difference between the IBC videos John recorded in 2014 and 2024 is striking. While his progression over these past 10 years has been relatively slow compared to many with ALS, it is easy to see that talking has become more difficult for him. When he gets out of his power wheelchair before the ice bucket is dumped on his head, he needs the help of two people, including Loretta, to move.
“This time, it was cold, probably a little bit colder than the first time,” says John. “But it really brought me back to how fortunate I am to be around ten years later, when so many people that I've known during my journey have passed away. I'm eternally grateful that I have the good fortune to still be here. But I’m perplexed by the fact that so many people don't get the chance that I’ve had. Which leads me to why I’m encouraging people to donate to ALS TDI.”
John isn’t just encouraging people to donate themselves, however – he’s also pitching an incredible amount himself. In the video, he promises to match up to $25,000 of donations to support ALS TDI’s research to end ALS throughout the month of August.
“I think ALS TDI deserves more funding,” he says. “They're the only nonprofit biotech totally focused on just ALS research. They've been established for so many years. I've gotten to know a lot of the people at ALS TDI. And I'm a true believer that the organization is focused correctly and doing the right thing every day to help ALS patients survive.”
To see John Russo’s 2014 and 2024 ALS Ice Bucket Challenge videos, and to donate to take advantage of his generous $25,000 match to support ALS research, click here.
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