About ALS
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.
About 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.
What We Do
Research
Each year since its founding in 1985, The ALS Association has increased its investment in research grants. In 2006, The Association funded 69 new research projects for a commitment of more than $7 million, and during the past decade, we have committed close to $40 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. The Association is currently funding more than 100 research studies.
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
Every May, The ALS Association leads a contingent of ALS patients, families, and caregivers to Capitol Hill for ALS Advocacy Day. In 2007, advocates from all 50 states attended Advocacy Day and met with 456 Members of Congress to support our public policy priorities.
The ALS Association worked with Congress to secure nearly $3 million in FY 2008 to build upon and expand the ALS registry at the CDC. Congress has directed a total of nearly $5 million for the registry, which will arm our nation’s researchers and clinicians with the data and information they need to advance research and improve standards of care.
We helped enact FDA legislation in 2007 that will speed drug development and help bring new treatments from the lab to the bedside as soon as possible.
The Association advanced the fight for veterans with ALS by increasing funding for ALS research at the Department of Defense in FY 2008, including $10 million for Gulf War research and $50 million for the Peer Reviewed Medical Research Program (PRMRP). Congress named ALS as one of only a small handful of diseases eligible for funding under the program.
We partnered with the Department of Defense in 2007 as it provided $5 million to establish the first ever Peer Reviewed ALS Research Program (ALSRP), which is focused on translational research, leading to new treatments for the disease.
In an historic victory for the ALS community, The ALS Association’s efforts led Congress to waive the 24-month waiting period for Medicare coverage of people diagnosed with ALS. Elimination of this waiting period positively affects the lives of people with ALS and provides them access to the care they need in a timely manner. The waiver took effect in July 2001.
In 2003, the Social Security Administration created a presumptive disability rule for ALS which allows people living with the disease to receive their disability payments months or even years sooner than they otherwise would have.
The ALS Association empowers its national grassroots network of advocates with the information and tools they need to speak out and play an active role in the fight for a treatment and cure in Washington, DC and state capitals across the country.
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.