ALS Association
From Wikipedia, the free encyclopedia
The ALS Association is the only national not-for-profit health organization dedicated solely to lead the fight against ALS, commonly known as Lou Gehrig's Disease. The Association covers all the bases - research, patient and community services, public education, and advocacy - in providing help and hope to those facing the disease.
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[edit] Mission
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.
[edit] Vision
In the quest to create a world without ALS, the vision of The ALS Association is to care for and support all people living with Lou Gehrig’s Disease as we leave no stone unturned in our relentless search for a cure.
The ALS Association will achieve their vision by upholding their commitment to be the:
- Preeminent organization and catalyst in directing, funding and promoting ALS research;
- Most comprehensive provider of care and support services to the ALS Community through our coordinated network of Chapters, Centers and clinics;
- Leading advocate and voice for the ALS Community;
- Recognized authority and most trusted source of information and education about ALS.
[edit] Values
The values of The ALS Association are as follows:
People with ALS and their families come first in everything we do.
Scientific credibility and innovation are the hallmarks of our research program.
Integrity, honesty and ethical behavior guide all our endeavors.
Champion the cause of people with ALS to raise awareness, understanding and support at every turn.
Collaboration and partnership within our organization and with others who share our goals and values promote continued success in the fight against ALS.
Mutual respect is the cornerstone for all our working relationships.
Financial strength enables us to accomplish our goals.
Commitment to excellence and professionalism are key tenets at all levels of our organization.
Diversity of ideas, cultures, ethnicities and backgrounds strengthen our efforts.
Teamwork: We are a unified organization with one vision and one mission.[1]
[edit] Research
The ALS Association drives ALS research through 1) funding international research programs from basic to clinical research, 2) the organization of scientific workshops to stimulate scientific collaborations and bring new scientists to the ALS field and 3) rapid translation of findings into clinical trials for ALS patients.
The ALS Association’s TREAT ALS (Translational 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. Already partnering with many organizations around the world including The National Institutes of Health (NIH), The ALS Association brings together an expert team of scientific and business advisors to steer this import drug discovery program.
Twice annually, The ALS Association invites researchers to submit proposals for consideration. The Association awards multi-year and starter grants as well as an annual post-doctoral fellowship. At any given time there are approximately 100 Association-funded research studies in progress. The ALS Association also initiates scientific studies through its ALS Association-initiated research 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.
ALS focused workshops for the scientific community are hosted by The ALS Association during the year to advance current knowledge about the mechanisms and cause(s) of ALS, attract more neuroscientists to ALS research and foster collaborative research. The Association’s Clinical Management Research Program, administered through Patient Services, focuses on managing the care of ALS patients in such areas as nutrition, respiration, mobility and psychosocial needs.
[edit] 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 2007, more than 800 people visited Washington, D.C. from 39 states, to raise awareness of ALS. In an historic victory for the ALS community, Our 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.
[edit] Chapters, Centers and Clinics
The ALS Association’s nationwide network of chapters, centers and clinics carry out the mission and actvities of The ALS Association at the local level. Chapters offer a variety of patient services to those living with ALS, their families and caregivers.
The objective of the ALS Center Program is to encourage and provide state-of-the-art care and clinical management of ALS through:
- The involvement of all necessary healthcare disciplines in the care of the ALS patient and family.
- The offering of care from a team of people specially trained to meet the needs of those living with ALS, regardless of the ability to pay whenever possible; when not possible, providing advice to treating physician.
- Collaborative work among ALS Association certified centers to enhance ALS patient care and techniques.
Local chapters have reached out to some of the best ALS physicians and clinics in their community to work closely with the clinic staff in meeting the needs of people with ALS and their families. These clinics provide excellent clinical care and many are modeled after the criteria of The ALS Association Center Program.
[edit] Walk to Defeat ALS
The Walk to Defeat ALS is The ALS Association's national signature event. Each year, over 100,000 people including ALS patients, families, friends and corporate leaders join together to raise funds in support of The Association’s cutting-edge research and community-based patient services programs. Now in its ninth year, approximately 150 Walks will be held around the country in 2008.[2]
