The 46-year-old ALS patient also founded his own namesake non-profit organization.
Anthony Senerchia, the credited inspiration behind the ALS Ice Bucket Challenge, passed away last weekend.
The 46-year-old Pelham, NY native was diagnosed with amyotrophic lateral sclerosis (ALS) in 2003. Eleven years later, the cousin of his wife, Jeanette, professional golfer Chris Kennedy, dumped a bucket of ice water on himself and encouraged others to do the same. The task was intended to raise awareness of the rare neuromuscular disease and encourage donations for research that would hopefully spark potential treatments.
ALS — commonly referred to as “Lou Gehrig’s Disease” – is characterized by early symptoms like muscle weakness and stiffness, but as the condition progresses, a patient will typically lose the ability to move, speak, swallow, and breathe.
After Pete Frates, another man living with the condition, posted a video of himself pouring an ice bucket onto his head, his large social media following helped turn the initiative into a social media frenzy. That year, over an 8-week period, more than $115-million was donated to ALS research.
Since then, 4 new genes associated with the condition have been discovered, more than 200 research projects have been funded, 2 new antisense drugs targeting ALS-associated genes have gone into clinical trial, and the research budget of The ALS Association has nearly tripled, making it the highest non-profit research funder outside of the US government.
To commemorate the birth of the campaign during its 3-year anniversary this August, Massachusetts state representative Jerald A. Parisella introduced a bill with state senator Joan B. Lovely to dedicate an annual week in the month as “Ice Bucket Challenge Week.”
In its own commemoration to the campaign's anniversary, the ALS Association announced genetic discoveries made in a series of funded collaborative initiatives. NEK1, 1 of 2 novel ALS genes discovered by massive DNA sequencing research group Project MinE, was uncovered as one of the most common ALS genetic contributors. The research funded $1 million by the ALS Association, which ran its own Ice Bucket Challenge dedication campaign "Every Drop Adds Up."
The ALS Association also shared developments in human induced pluripotent stem cell (iPSC) technology in their commemoration to Senerchia's campaign in August. The iPSC technology, developed for sporadic ALS clinical efforts by researchers at the Cedars-Sinai Medical Center in Los Angeles, CA, can be used to idefnitely recreate a patient's genetic makeup for multiple experiments.
It can also be genetically modified to produce "reporter" cell lines, according to the association, which allows better tracking of individual motor neurons under an automated microscope with fluorescent color-coding. In part due to the Ice Bucket Challenge campaign fundraising, the ALS Association helped fund the generation of 24 iPSCs from 11 healthy people, 10 mutation carriers, and 3 sporadic ALS cases, which are now available to ALS researchers worldwide.
Senerchia also founded his own non-profit organization: The Anthony Senerchia Jr. ALS Charitable Foundation. But it was his involvement with a simple campaign that Senerchia became part a movement that progressed some of the most groundbreaking clinical developments in the history of ALS.
"It’s a difficult disease and tough when you’re losing,” Jeanette Senerchia told Lohud.com. “Your body is failing you. But he was a fighter. He was our light. He made our life better.”
A version of this article was originally posted on Rare Disease Report.