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ResearchThe Association's multifaceted research program includes peer-reviewed investigator-initiated scientific studies, cure-directed ALSA-initiated research and scientific workshops focusing on supporting ALS researchers.
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.
Twice annually ALSA invites researchers to submit proposals for consideration. ALSA awards multi-year and starter grants as well as an annual post-doctoral fellowship. Awards for investigator-initiated research total close to $2 million annually. At any given time there are some 70 studies in progress representing a total ALSA commitment of $7.8 to $8 million.
ALSA also initiates scientific studies through its aggressive "cure-directed" program. Launched in 2000, this effort complements and works in tandem with the investigator-initiated research by engaging established investigators with extensive expertise and applying the most advanced technology to answer the more complex questions about ALS that must be answered - answers that will lead to effective treatments and a cure. Currently there are 40 active projects representing a total commitment of $5.85 million.
The ALS Association has also created the Post-Doctoral fellowship grant program. This program gives scientists who have recently earned a doctorate in scientific research the opportunity to work closely with a principle researcher in an established laboratory working in the field of ALS, neurodegenerative diseases or other areas relevant to ALS research.
AdvocacyThe 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 twenty-eight 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 an 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 ServicesALSA 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 40 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 ALSTM, raising more than $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 more than 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 & AwarenessThrough public outreach, media relations, and the Internet, ALSA continually raises awareness about ALS and the search for a cure.
On average, each month 75,000 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 newsletter, A Reason for Hope, reaches an estimated readership of 360,000.
For more information, please visit The National ALS Association's web site.
The ALS Association Greater
Los Angeles Chapter • P.O. Box 565, Agoura Hills, CA 91376-0565, Tel: (818)