BOSTON, July 15, 2019 /PRNewswire/ -- Hundreds of Bostonians today joined The ALS Association to commemorate the fifth anniversary of the ALS Ice Bucket Challenge with its co-founders, Pete Frates (Beverly, Mass.) and Pat Quinn (Yonkers, NY). The Ice Bucket Challenge inspired 17 million people to take the Challenge, which led to over $115 million in donations to The ALS Association, dramatically accelerating the search for new treatments and a cure for ALS, an always-fatal neurodegenerative disease. The anniversary event aimed to once again inspire people to rally around the ALS community and take part in "Challenge Me," a new campaign inspired by Frates and Quinn, which is challenging people to do whatever they can to help finish the fight against ALS.
Funding and awareness generated by the Ice Bucket Challenge has transformed ALS research, treatment and care, though there still is no significant life-extending treatment or cure for ALS. Over the past five years, the research community has discovered five new ALS genes to help narrow targets for treatments and a cure. Several new global research collaborations have been funded and there are new potential treatments in the pipeline. The clinical network that provides critical services to those living with ALS has also expanded by 50 percent, and advanced technology is allowing them to live higher quality, more independent lives.
"The Ice Bucket Challenge changed the trajectory of ALS forever and we need to keep the momentum going," said Calaneet Balas, President and CEO of The ALS Association. "We owe our thanks to these brave young men and their families, the thousands of people who are living with ALS, and all those who are no longer with us. We are eternally grateful for the millions of people around the world who have joined us in this fight and want to be sure they understand how much of an impact their acts of caring and generosity made in the ALS community."
"When we started the Ice Bucket Challenge, we really had no idea what to expect," said Pat Quinn, co-founder of the Ice Bucket Challenge. "Five years later, we're closer than ever to a cure and we have 17 million people around the world to thank. It's pretty remarkable."
Origins of the Ice Bucket Challenge
On July 15, 2014, a golfer named Chris Kennedy dumped ice on his head for ALS and challenged his cousin Jeanette Senerchia of Pelham, NY, whose late husband Anthony had ALS. Jeanette took the Challenge and posted to Facebook where her video was seen by Pat Quinn, who picked up the Challenge and had his network of supporters, Quinn for the Win, take the Challenge. Pat also knew Pete Frates, who had his own group of supporters, Team Frate Train. The global phenomenon was not just rooted in Massachusetts; the Commonwealth has also served as the epicenter for breakthrough ALS research, including at institutions like UMass Medical School, Harvard and Mass General. Massachusetts Governor Charlie Baker and Lieutenant Governor Karyn Polito joined Pete and Pat at today's event in Copley Square, where Bostonians had gathered five years earlier to take the challenge together.
"The Ice Bucket Challenge showed us what's possible when everyone joins the fight against ALS, so we're going to keep asking people to get involved until we finally find a cure," said Nancy Frates, mother of Pete, co-founder of the Ice Bucket Challenge.
Facebook and the Impact on Global Giving to Charity
The ALS Ice Bucket Challenge not only inspired millions of people to raise awareness and funds for ALS, it launched new opportunities for nonprofits and causes to fundraise on Facebook.
Seeing the global phenomenon of the ALS Ice Bucket Challenge compelled the Social Good team at Facebook to build tools like the Donate button, Fundraisers, and the Fundraisers API to make it easy for people to support the causes and people they care about.
"The Ice Bucket Challenge sparked a movement that helped transform research and treatment for people living with ALS and inspired us to build fundraising tools that have now helped people come together and raise over $1B to support the people and causes they care about on Facebook," said Emily Dalton Smith, Director of Social Good at Facebook.
To learn more about the Challenge Me campaign and to see video testimonials about the impact of the Challenge from researchers, clinicians, and people with ALS, please visit ChallengeALS.org.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, to speak, and eventually, to breathe. On average, it takes about a year before a final ALS diagnosis is made. The disease is always fatal, usually within five years of diagnosis. There is no cure. For unknown reasons, veterans are twice as likely to develop ALS as the general population.
About The ALS Association
The ALS Association is the largest private funder of ALS research in the world. The Association funds global research collaborations, provides assistance for people with ALS and their families through our nationwide network of chapters and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association builds hope and enhances quality of life while urgently searching for new treatments and a cure. For more information about The ALS Association, visit our website at www.alsa.org.
SOURCE The ALS Association