ALS Association

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The ALS Association is an American non profit organization that raises money for research and patient services, promotes awareness about and advocates in state and federal government on issues related to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. The ALS Association is broken up into distinct chapters each servicing a particular geographic area of the United States all working under the umbrella of a national charter and administrator. While each individual chapter is basically autonomous, some smaller chapters rely heavily on the national organization for assistance. Each chapter provides education, advocacy and essential services to ALS patients, their families and caregivers, while the national organization funds research and supports the cause as a whole.

Research

The ALS Association drives ALS research through:

  • Funding national and international research programs from basic to clinical research
  • The organization of scientific workshops to stimulate scientific collaborations and bring new scientists to the ALS field and
  • Rapid translation of findings into clinical trials for ALS patients.

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.

The current Science Director and Vice President of Research for The ALS Association is Lucie Bruijn, Ph. D. Dr, Bruijn came to The ALS Association in 2001. As Science Director and Vice President of Research, Dr. Bruijn directs The ALS Association’s diverse research program, which is seeking to unravel the mysteries of ALS. Holding a bachelor’s degree in Pharmacy, a master’s degree in Neuroscience and a doctorate in Biochemistry,[citation needed] Dr. Bruijn developed and characterized one of the mouse models of ALS.

TREAT ALS Program

The ALS Association’s TREAT ALS (Translational Research Advancing Therapy for ALS)[1] 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.

ALS Research Workshops

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 ALS Association Certified Center Program

The mission of The ALS Association CenterSM Program is to define, establish and support a national standard of care in the management of amyotrophic lateral sclerosis (ALS), sponsored by The ALS Association.

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; and
  • Collaborative work among Centers to enhance ALS patient care and techniques

The ALS Association selects, certifies and supports distinguished regional institutions recognized as the best in the field with regard to knowledge of and experience with ALS; and which have neurological diagnostics and imaging, and available on-site licensed and certified ancillary services on clinic days including (but not limited to):

  • Physical therapy
  • Occupational therapy
  • Respiratory therapy
  • Nursing
  • Registered dietician services
  • Ph.D. psychology or psychiatry
  • Speech and language pathology
  • Social Work

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.

Advocacy for research, health & long-term care, and caregiver support is the primary function of the Advocacy Department of The ALS Association. Based in Washington, D.C., The ALS Association’s Capital Office coordinates the federal and state advocacy program, works directly with Congress, the White House, other federal agencies and other national organizations, and provides training and support for ALS Association advocates.

The Capital Office also organizes The ALS Association’s National Advocacy Day and Public Policy Conference each year. This event is the ALS community’s only opportunity to join together to educate Members of Congress on the importance of stepping up the fight to conquer ALS through research, care and support.

Every May during ALS Awareness Month, the ALS Association leads a contingent of ALS patients, advocates, and caregivers to Capitol Hill for a National ALS Advocacy Day and Public Policy Conference. In 2007, more than 800 people visited Washington, D.C. from 39 states, to raise awareness of ALS.

The ALS Association'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. Participation of advocates throughout the ALS community resulted in ALS being included with only twenty-eight other diseases in the Department of Defense 2003 Appropriations bill $50 million Peer Reviewed Medical Research Program.

In an historic victory for the ALS community, their 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.[citation needed]

Chapters

The ALS Association chapter is a multi-faceted grass-roots organization that carries out The ALS Association's mission and strategic goals at the community level.[2] The chapter - with supporting services from the National Office - actively pursues The Association's goals by providing a wide range of services for people living with ALS, their caregivers, families and friends as well as professional health care providers throughout the service area. Each ALS Association chapter offers programs that can include many of the following:

  • Patient education programs
  • Support groups
  • Telephone information/referral service
  • Equipment loan programs
  • Augmentative communication device programs
  • Respite programs
  • Programs of information and support for caregivers and family members
  • Referrals to ALS clinics and physicians
  • Support nationally-directed research programs
  • Local and nationally-directed advocacy programs

References

  1. ↑ The ALS Association’s TREAT ALS Program (Translational Research Advancing Therapy for ALS)
  2. ↑ Full List of ALS Association Chapters

External links

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