Rare Disease Report

ALS Takes Inspiration Behind the Ice Bucket Challenge

NOVEMBER 29, 2017
Mathew Shanley
Anthony Senerchia, 46, died on November 25.

Senerchia is credited with being the inspiration behind the viral sensation that took 2014 by storm, the Ice Bucket Challenge.

In 2003, the Pelham, NY native was diagnosed with amyotrophic lateral sclerosis (ALS). 11 years later, his wife Jeanette’s cousin, 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 U.S. Government.

This past August marked the third anniversary of the Ice Bucket Challenge, and to commemorate the birth of the campaign, 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.” A month prior, the ALS Association announced the establishment of the Pete Frates Home Health Initiative, which aims to financially assist between 3 and 5 ALS patients each year.

In 2014, the Ice Bucket Challenge was taken by several public figures, including now-U.S. President Donald Trump, founder of the Microsoft Corporation Bill Gates, and Grammy Award winner Justin Bieber. Their videos can be seen below:







For more on the Ice Bucket Challenge and other actions that can be taken on behalf of rare disease advocacy, follow Rare Disease Report on Facebook and Twitter.
 

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