About The ALS Association
Established in 1985, The ALS Association is the only national 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, care services, public education, and public policy — 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 treat and cure ALS through global research and nationwide advocacy, while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.
What We Do
Since 1985, through our Translational Research Advancing Therapies for ALS (TREAT ALS™) program, The ALS Association has funded more than $99 million in research and clinical management projects. This unrelenting focus has resulted in some of the greatest ALS research discoveries to date.
We’re presently funding close to 100 active research projects, selected through a peer review process involving top ALS scientists.
From the earliest stages, The ALS Association has recognized novel approaches that have led to significant ALS research findings, including:
- The use of induced pluripotent stem cells generated from individuals skin cells for drug development;
- The movement of antisense therapy in genetic forms of ALS into clinical trials; and
- The identification of the C9orf72 gene, the single most important discovery in the field of ALS for two decades.
Worldwide Comprehensive Approach
The ALS Association is at the forefront of the global research effort to find treatments and a cure for ALS. How is our TREAT ALS™ program unique?
- Operates with a global scope
- Funds all phases of ALS research
- Aims to translate research findings into meaningful therapies
- Forges partnerships with government, academia, industry and other nonprofits
- Benefits from having direct access to patients to participate in clinical trials
- Involves a world-renowned panel of scientific advisors
- Employs a robust scientific review process
- Exercises flexibility to ensure rapid funding of novel ideas
- Funds projects with the highest scientific merit
- Encourages young scientists to pursue careers in ALS
- Thrives as part of The ALS Association’s three-pronged approach to find treatments and a cure for the disease through research, care services and public policy
Changing Landscape of ALS
In the past decade, major changes in the pharmaceutical industry and the drug development landscape have taken place.
The severity of ALS, the lack of effective treatments, the significant progress made in ALS research as well as the identification of targets that make it more tractable to develop therapies for ALS have all resulted in the increased interest in ALS in the industry sector.
ALS is linked to other neurodegenerative diseases like Alzheimer’s and Parkinson’s. Increased understanding of one disease is likely to have major benefits in understanding the others.
Implementing a Solid Strategy
To maximize results, The Association channels our funding, made possible through the generous support of donors, into global research projects focused on six tightly-related areas:
- Identifying ALS genes
- Understanding disease mechanisms
- Using stem cells for disease modeling and therapy testing
- Finding disease biomarkers
- Developing therapies
- Improving clinical trials
Supporting Projects and People
The ALS Association offers a variety of grants and awards to individual scientists and private industry to accelerate the development of treatments and a cure for the disease.
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.
Spirit of Collaboration and Leadership
The ALS Association holds workshops each year that bring together scientists researching ALS and other neurodegenerative diseases, the pharmaceutical industry and biotech companies to generate new research suggestions and fresh insight. In addition, The Association staff serve and hold leadership positions on a various national and international organizations dedicated to unlocking the mysteries of ALS.
The Association’s network plays a lead role in advocating 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.
Among the signature accomplishments of our Public Policy Department are:
24-Month Medicare Waiver
Eliminated the 24-month waiting period that people disabled with ALS had to endure before they could start receiving Medicare benefits. ALS is now one of only two diseases for which the waiting period does not apply, and the waiver for ALS is the only change Congress has made to the waiting period since it was first established.
National ALS Registry
Enacted the ALS Registry Act to establish the first nationwide ALS patient registry, which may become the single largest ALS research project ever created. The registry is administered by the Centers for Disease Control and Prevention and people with ALS across the country began enrolling in the registry in October 2010.
Advocated for historic regulations at the Department of Veterans Affairs that designate ALS as a service connected disease. Veterans with ALS and their survivors are now eligible for full health and disability benefits, regardless of where or when they served in the military and regardless of how soon after discharge they were diagnosed.
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.