06/16/2003 7:55 PM ET
Facts about ALS
About The ALS Association
The ALS Association is the only national not-for-profit health agency dedicated solely to the fight against ALS. ALSA covers all the bases -- research, patient and community services, public education, and advocacy -- in providing help and hope to those facing the disease. The mission of The ALS Association (ALSA) is to find a cure for and improve living with amyotrophic lateral sclerosis.
Facts About ALS
Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig's disease, is a 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 hundred thousand population.
The average life expectancy of a person with ALS is two to five years from time of diagnosis. But 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 10 percent will survive more than 10 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.
Research -- The ALS Association is the largest private source of funding for ALS-specific scientific research in the world.
Since 1991, ALSA has awarded nearly $27 million to fund research seeking to identify the cause, means of prevention, and cure for ALS. Currently, ALSA-funded scientists are looking into 15 different research areas relevant to ALS.
In May 2000, ALSA announced an aggressive initiative to rapidly accelerate the search for a cure for ALS -- The Lou Gehrig Challenge: Cure ALS. In just 30 months, $10 million has been raised toward the initiative's $25 million goal. The strategy of this program is to recruit outstanding investigators, identify the most promising directions in ALS research and develop new ALS therapies. To date, 29 promising new research projects have been funded through The Lou Gehrig Challenge representing a total commitment of $5.3 million in new grants.
The Lou Gehrig Challenge complements ALSA's investigator-initiated research program. In this category, ALSA is currently supporting 62 investigator-initiated scientific research projects, representing a commitment of some $7 million.
ALSA regularly convenes scientific workshops to examine new trends in ALS research, providing vital leadership in areas ranging from examining research on ALS and the environment to engaging and educating young investigators.
ALSA's clinical management research program focuses on managing the care of ALS patients in areas such as nutrition, respiration, mobility, quality of life, and psychosocial needs. Currently, ALSA is funding 11 clinical management research grants, representing a commitment of $280,000.
Advocacy -- The ALSA network plays a lead role in advocacy for increased public and private support of ALS research and health care reform that responds to the demands imposed by ALS.
ALSA'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, the Food and Drug Administration, and the Social Security Administration.
Thanks to the participation of advocates throughout the ALS community, ALS was included among only 28 diseases in the Department of Defense 2003 Appropriations bill $50 million Peer Reviewed Medical Research Program.
Every May, ALSA leads a contingent of ALS patients, advocates, and caregivers to Capitol Hill for National ALS Advocacy Day. In 2003, more than 600 people visited Washington, D.C. from 39 states, to raise awareness of ALS.
In a historic victory for the ALS community, ALSA's efforts led Congress to waive the 24-month waiting period for Medicare coverage of people diagnosed with ALS as part of the fiscal year 2001 spending bill. Elimination of this waiting period will positively affect the lives of people with ALS and provide them access to the care they need in a timely manner.
ALSA monitors and provides its national grassroots network of passionate volunteers with the information and support needed to keep healthcare professionals, the biotech community, the media, and lawmakers abreast of challenges, as well as opportunities at hand in the ongoing fight against the disease.
Patient and Community Services -- ALSA 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.
ALSA's 38 chapters provide localized patient and family support in communities across the country.
To better serve people with ALS and their families, ALSA is currently working with its network of free-standing support groups to expand the number of ALSA chapters nationwide.
More than 50,000 people in 84 cities participated in the 2002 Walk to D'Feet ALS, raising over $6 million. People living with ALS, their friends, families, and the corporate community came together in support of this nationwide effort.
Each month, ALSA's National Office serves over 1,200 ALS patients and their families. ALSA chapters nationwide collectively serve thousands more.
Our nationwide network of 19 certified ALS clinics -- ALSA Centers -- provides state-of-the-art, multidisciplinary 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, ALSA continually raises awareness about ALS and the search for a cure.
On average, each month 1.2 million unique viewers visit ALSA's website, a vital source of information for those battling ALS and for people looking for the latest news and information about the disease.
ALSA's quarterly newsletter, LINK, is distributed to 120,000 people, reaching an estimated readership of 360,000.
To help raise awareness of ALS among the general public, ALSA created "Lou's Team" in honor of baseball legend Lou Gehrig, who died of ALS. "Lou's Team" members include: Curt Schilling, Arizona Diamondbacks pitcher; Shonda Schilling, a member of the Board of Directors of ALSA's Greater Philadelphia and Arizona Chapters and a dedicated advocate in the fight against ALS; Steve Garvey, former Los Angeles Dodgers and San Diego Padres first baseman; Steve Beuerlein, Denver Broncos quarterback; Todd McFarlane, producer/director of Spawn and owner of The McFarlane Collection of sports memorabilia; and George Brett, Hall of Fame Kansas City Royals third baseman.
|Courtesy of ALS Association