The ALS Association: What We Do
The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against ALS. The ALS Association 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 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.
Research
The 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, The ALS Association has awarded more than $30 million to fund research seeking to identify the cause, means of prevention, and cure for ALS. Currently, ALS Association-funded scientists are looking into 15 different research areas relevant to ALS.
Twice annually the Associatoin invites researchers to submit proposals for consideration. We award 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.
The ALS Association 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.
Advocacy
The ALS Association 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.
Our 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, the Association leads a contingent of ALS patients, advocates, and caregivers to Capitol Hill for National ALS Advocacy Day. In 2006, more than 800 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.
The Association 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
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 nation-wide network of chapters provide localized 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. More than 50,000 people in 100 cities participated in the 2006 Walk to D'Feet ALSTM, raising more than $9 million. People living with ALS, their friends, families, and the corporate community came together in support of this nationwide effort.
Each month, the National Office serves more than 1,200 ALS patients and their families. The chapters nationwide collectively serve thousands more. Our nationwide network of certified ALS clinics -- ALS Association Certified CentersSM -- 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, the Association continually raises awareness about ALS and the search for a cure.
On average, each month 75,000 viewers visit the Association's national 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.
|
