It's not what we take from life, but what we give back to others is what ultimately defines us.
Those are the words of Anthony Senerchia Jr., the man who inspired the Amyotrophic Lateral Sclerosis (ALS) ice bucket challenge. He died on November 25 at the age of 46, after a 14-year fight with the neurodegenerative disease.
We are very sorry to share that Anthony Senerchia, co-founder of #ALSIceBucketChallenge passed away on Saturday. Please see this video to learn more about him and his wife, Jeanette, and how they helped inspire a global phenomenon. https://t.co/4HFasgcif9— The ALS Association (@alsassociation) November 27, 2017
According to his obituary, Senerchia was only expected to live for a few years, but beat doctors expectations by living for more than ten years beyond their prognosis.
ALS is also known as Lou Gehrig's disease and affects the muscles and affects physical function.
Brian Frederick, Ph.D., who is the Executive Vice President of Communications and Development for the ALS Association, said that there are nearly 25,000 people living with ALS in the United States.
National Institute of Health's (NIH) website says that 90% of people living with ALS only live for 3-5 years following their diagnosis because the disease is so degenerative. Only around ten percent of people with ALS live for ten years or more.
Senerchia created the Anthony Senerchia Jr. ALS Charitable Foundation which has made substantial monetary donations to the Columbia Presbyterian Medical Center for ALS research. Through his awareness and advocacy work, Senerchia was also the co-founder of the viral ice bucket challenge campaign that has raised more than one-hundred million dollars for ALS research.
Today, Circa spoke with Frederick about ALS and how money raised from the ice bucket challenge has helped fund research to find a cure for the disease. During the height of the ice bucket challenge over $115 million dollars was raised. That money is currently funding about 126 projects in 11 countries that are working toward treatments and a cure for ALS.
Check out these other Circa stories:
Co-founder of ‘Ice Bucket Challenge’ has died after ALS battle
CVS to purchase Aetna in $69-billion deal with potential to transform health care