ALS Ice Bucket Challenge Takes U.S. by Storm

The Ice Bucket Challenge
Source: ALSA.org

In the last two weeks, the Ice Bucket Challenge has quite literally “soaked” the nation. Everyone from Ethel Kennedy to Justin Timberlake has poured a bucket of ice water over his or her head and challenged others do the same or make a donation to fight ALS within twenty-four hours.

Between July 29 and today, August 12, The ALS Association and its 38 chapters have received an astonishing $4 million in donations compared to $1.12 million during the same time period last year. The ALS Association is incredibly grateful for the outpouring of support from those people who have been doused, made a donation, or both. Contributions further The Association’s mission to find a cure for ALS while funding the highest quality of care for people living with the disease.

“We have never seen anything like this in the history of the disease,” said Barbara Newhouse, President and CEO of The ALS Association. “We couldn’t be more thrilled with the level of compassion, generosity and sense of humor that people are exhibiting as they take part in this impactful viral initiative.”

With only about half of the general public knowledgeable about amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, the Ice Bucket Challenge is making a profound difference. Since July 29, The Association has welcomed more than 70,000 new donors to the cause.

“While the monetary donations are absolutely incredible,” said Newhouse, “the visibility that this disease is getting as a result of the challenge is truly invaluable. People who have never before heard of ALS are now engaged in the fight to find treatments and a cure for ALS.”

Currently, there is only one drug approved by the U.S. Food and Drug Administration (FDA) to treat ALS, which only modestly extends survival by two to three months. Consequently, ALS is 100 percent fatal. In addition to acclimating to the challenges that come with losing control of voluntary muscle movement, people with the disease progressively lose their ability to eat, speak, walk, and eventually breathe.

“With more people aware and more people engaged in the fight against ALS, we are poised to work collaboratively with not only other ALS organizations, but also with pharmaceutical companies and academia to expedite new treatments for people impacted by the disease,” Newhouse continued.

Experience the #IceBucketChallenge phenomenon that’s spreading ALS Awareness across social media. Challenge your friends and family today!​

• Twitter: http://www.alsa.org/fight-als/ice-bucket-challenge-twitter.html
• Facebook: https://www.facebook.com/hashtag/icebucketchallenge
• YouTube: https://www.youtube.com/results?search_query=%23icebucketchallenge
• Instagram: http://www.alsa.org/fight-als/ice-bucket-challenge-instagram.html

What We Do

Research

The ALS Association has committed more than $67 million to find effective treatments and a cure for Lou Gehrig’s Disease. Our global research effort has helped increase the number of scientists working on ALS, advanced new discoveries and treatments, and has shed light on the complex genetic and environmental factors involved in ALS.

Diversity exemplifies The ALS Association’s research philosophy. The Association spearheads “investigator-initiated” projects that originate from the minds of scientists. It also has “ALS Association-initiated” projects in which research ideas come from a small, blue ribbon committee of scientists who reach out with specific projects for designated scientists in the field. The ALS Association offers multi-year grants to established investigators, as well as one-year “starter” research awards.

The Association is proud to administer The Milton Safenowitz Post-Doctoral Fellowship for ALS Research, which is the only post-doctoral fellowship for ALS research. In addition, The ALS Association’s Sheila Essey Award, the premier ALS award, recognizes achievement in research. The ALS Association holds workshops each year that bring together scientists researching ALS and other neurodegenerative diseases to generate new research suggestions and fresh insight. In addition, our TREAT ALS (Transitional Research Advancing Therapy for ALS) initiative combines efficient new drug discovery with priorities set for existing drug candidates to accelerate clinical testing of compounds with promise for the disease.

Our Clinical Management Research Program focuses on managing the care of people with ALS in such areas as nutrition, respiration, mobility and psychosocial needs. Since 1998, The Association has funded 22 clinical management research projects representing a total commitment of $750,000. The Association produces a series of manuals and videos as well as a DVD, called Living with ALS, that educate patients about all aspects of the disease.

Public Policy

The Association’s network plays a lead role in advocacting for increased public and private support of ALS research and public policy initiatives that responds to the needs of people with ALS. Our organization’s public policy efforts in Washington, D.C. have raised the profile of ALS at the White House, among members of Congress, and within federal agencies, including the National Institutes of Health, Centers for Medicare and Medicaid Services, Food and Drug Administration, Department of Defense, Department of Veterans Affairs, Social Security Administration, and Centers for Disease Control and Prevention. The Association’s advoacy efforts have generated more than $365 million for ALS research over the past 10 years.

Among the signature accomplishments of our Public Policy Department are: enactment of the ALS Registry Act to establish the first central database that will identify cases of ALS throughout the United States and collect comprehensive information about the disease never before collected on a nationwide scale. The registry, signed into law by President Bush on October 8, 2008, is administered by the Centers for Disease Control and Prevention/Agency for Toxic Substance and Disease Registry and is the single largest ALS research project ever created, advancing research, promoting a better understanding of the disease and improved standards of care while potentially revealing clues about ALS’s causes. Members of Congress lauded The Association’s leadership in passing the bill, which cleared the Senate by unanimous consent and passed the House by a vote of 415-2.

Care Services and Chapter Relations

The ALS Association helps patients and families cope with the day‑to‑day challenges of living with ALS by providing information, resources, and referrals to many sources, including a wide variety of community services.

Our network of chapters provides patient and family support in communities across the country. To better serve people with ALS and their families, The Association is currently working with its network of free-standing support groups to expand the number of chapters nationwide.

The Association’s Walk to Defeat ALS®, is held in numerous cities in the fall and spring across the nation by The Association’s nationwide network of chapters. Since the debut of the Walk in 2000, the event has raised more than $100 million. More than 100,000 people with ALS, their friends, families, and the corporate community come together in support of this nationwide effort.

Each month, The Association’s National Office serves more than 1,200 ALS patients and their families. Our chapters nationwide collectively serve thousands more.

Our nationwide network of ALS Association Certified Centers of ExcellenceSM provide state-of-the-art, multi-disciplinary ALS care and services in a supportive atmosphere with an emphasis on hope and quality of life. To become certified as one of these centers of excellence, an ALS clinic must achieve national prominence, meet rigorous clinical care standards, and pass a comprehensive site inspection.

Public Education & Awareness

Through public outreach, media relations, social media and the Internet, The Association continually raises awareness about ALS and the search for a cure. On average, each month 250,000 viewers visit our website, a vital source of information for those battling ALS and for people looking for the latest news and information about the disease. The ALS Association’s magazine, Vision, is mailed and distributed online, reaching an estimated readership of 360,000. The Association has achieved expanded awareness and support of ALS issues through relationships with other organizations such as Major and Minor League Baseball, and through effective interaction with the nation’s news media.

April 2014

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