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Quick Facts About ALS & The ALS Association

The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against ALS. 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.

Quick Facts about ALS

  • Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord.  When these cells die, voluntary muscle control and movement dies with them.  Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert.
  • Every day, an average of 15 people are newly diagnosed with ALS — more than 5,600 people per year. As many as 30,000 Americans may currently be affected by ALS. Annually, ALS is responsible for two deaths per 100,000 people.
  • The average life expectancy of a person with ALS is two to five years from time of diagnosis.  With recent advances in research and improved medical care, many patients are living longer, more productive lives. Half of all those affected live at least three years or more after diagnosis.  About 20 percent live five years or more, and up to ten percent will survive more than ten years.
  • ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.  ALS can strike anyone. Every single American is threatened by this disease.

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.

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. The Association's advocacy efforts have generated more than $365 million for ALS research over the past 10 years.

Among the signature accomplishments of our Advocacy and 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 may become 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.

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 $159 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 150,000 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.

March 2012

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Lou Gehrig® used with permission of the Rip Van Winkle Foundation / www.LouGehrig.com