The ALS Association: What We Do
About The ALS Association
Established in 1985, The ALS Association is the only non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. As the preeminent ALS organization, The Association leads the way in research, patient and community services, public education, and advocacy — giving help and hope to those facing the disease. The Association’s nationwide network of chapters provides comprehensive patient services and support to the ALS community. The mission of The ALS Association is to lead the fight to cure and treat ALS through global cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.
Research
The ALS Association directs the most comprehensive, global ALS research program ever organized and is currently overseeing approximately 100 different research projects into all aspects of ALS. During the past decade, The Association has committed $48 million toward ALS research. Each dollar has gone directly to investigators doing the research.
The ALS Association’s research enterprise is recognized in the ALS community for its scope and diversity. The Association funds more ALS research than any other organization. Our organization has research projects covering every hypothesis that now exists about the pathogenesis of this disease.
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 16 clinical management research projects representing a total commitment of $650,000. 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.
Advocacy
The Association’s network plays a lead role in advocacy 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 advocacy 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.
More Quick Facts: Public Policy
- Because of The Association, Congress, in 2000, voted to waive the 24-month Medicare waiting period for ALS patients.
- In 2003, because of The Association, Congress granted people with ALS quicker access to Social Security disability benefits.
- Generated more than $365 million for ALS research over past 10 years.
- Advanced regulations that establish ALS as a service connected disease.
- Enacted the ALS Registry Act to create the first nationwide patient registry at the Centers for Disease Control.
Patient and Community Services
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 national signature fundraising event, 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 $82 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, and the Internet, The Association continually raises awareness about ALS and the search for a cure. On average, each month 50,000 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 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.
