CHIGAGO, August 15, 2014 – Having a bucket of ice water dumped on your head may not seem dignified, but it is certainly helping MDA and other ALS-fighting organizations raise awareness and funds as the viral social media craze continues to sweep across America.
Today, Steven M. Derks, President and CEO of the Muscular Dystrophy Association, joined the ranks of tens of thousands of people willing to get chilled in the ALS Ice Bucket Challenge.
Derks accepted the good-natured challenge issued by ALS Association President and CEO Barbara Newhouse. To do so, he enlisted the help of some longtime MDA friends, members of the International Association of Fire Fighters in Berwyn, Ill., who surprised the CEO with his drenching.
“We have been moved beyond words by the power of one family’s ability to make such a meaningful difference,” said Derks. “All of us at MDA are incredibly grateful to everyone who is stepping forward to raise awareness and donations for ALS. It will take all of us working together to find treatments and a cure, and MDA will not rest until we end ALS.”
The IAFF has been supporting MDA for 60 years strong through its widely visible Fill the Boot campaign with fire fighters collecting donations at strong corners in communities nationwide. About the same time IAFF partnered with MDA, Lou Gehrig’s wife Eleanor joined MDA as its campaign leader after the New York Yankee legend lost his well-documented fight. Since then, thanks to the generosity of millions of Americans and sponsors, MDA has dedicated almost $325 million to ALS research and health care services supporting ALS patients and families.
Being an umbrella organization that covers more than 40 neuromuscular and motor neuron diseases in its portfolio puts MDA in a unique position to leverage the advances in research and best practices for clinical care from one disease to inform progress in others.
“Families fighting ALS do not always have time on their side, so it’s so important that we all do whatever’s in our power to accelerate progress in fighting the disease,” Derks said. “The Ice Bucket Challenge is wonderful because it’s capturing the public’s interest and generating increased awareness of the urgent need to defeat ALS. We hope everyone will help us fight back by making a donation to MDA and our sister ALS organizations.
MDA currently has 50 ALS research projects worldwide with a total commitment of $15 million. It also operates an ALS Clinical Research Network housed at five of the largest ALS research centers in the country and has a nationwide network of nearly 200 clinics specializing in muscle disease, 44 of which are designated as ALS centers.
Beyond the Ice Bucket Challenge – The story of Ben Thomas
MDA underscored that as the clever campaign continues to spread, the focus needs to stay on helping the people and families fighting muscle disease. The charity singled out a brave family fighting ALS that was profiled on MDA’s last telethon, the Thomas family of St. George, Utah. Husband and father Ben, 33, is one of the more than 10,000 ALS families in registered with MDA.
As is customary with all Ice Bucket Challenge videos, Derks called out members of his business and social circles to raise research and services funds for the deadly disease. He challenged IAFF General President Harold Schaitberger, President and CEO of Jiffy Lube International Steven Ledbetter, and Chicago Cubs’ Owner Tom Ricketts and President of Business Operations Crane Kenney.
The viral ALS Ice Bucket Challenge started when 29-year-old Pete Frates, diagnosed with ALS in 2012, posted an ice bucket video on social media and challenged a few friends to follow his lead. The #ALSIceBucketChallenge has since become a social media sensation, sweeping the country with compassion and support.
ALS, also known as amyotrophic lateral sclerosis or Lou Gehrig’s disease, is a disease of the parts of the nervous system that control voluntary muscle movement. Nerve cells that control muscle cells are gradually lost, causing the muscles to become weak and eventually nonfunctional. Walking, talking, eating, hugging and even breathing become nearly impossible, although the mind stays sharp. Most people with ALS live 3 to 5 years after diagnosis. To learn more, click on the topics about ALS to the right.
The Muscular Dystrophy Association is the world’s leading nonprofit health agency dedicated to saving and improving the lives of anyone with muscle disease, including muscular dystrophy, amyotrophic lateral sclerosis (ALS) and other neuromuscular diseases. It does so by funding worldwide research to find treatments and cures; by providing comprehensive health care services and support to MDA families nationwide; and by rallying communities to fight back through advocacy, fundraising and local engagement. Visit mda.org and follow us at facebook.com/MDAnational and @MDAnews. Learn more about MDA's mission by watching this video.