ALS Association

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ALS Association
ALS Association logo.gif
Motto Create a world without ALS
Founded 1985
Type Non-governmental organization
Focus Research, Patient Aid
Location
President and CEO Jane H. Gilbert
Revenue $24 million (in 2013)[1]
Website alsa.org

The ALS Association is an American nonprofit 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.

TREAT ALS Program[edit]

The ALS Association’s TREAT ALS (Translational Research Advancing Therapy for ALS)[2] 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[edit]

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.

Advocacy[edit]

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.

ALS Association advocacy efforts have led to federal funding for peer reviewed medical research (2003) and shorter waiting periods for Medicare patients with ALS (2001).[3]

Chapters[edit]

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.[4] 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

Awareness and fundraising[edit]

Walk to Defeat ALS logo.png

The Association's signature fundraising event each year is the "Walk to Defeat ALS". This event is held each fall through spring by local chapters of the association in cities across the United States.[5] Since its inception in 2000, this event has raised over $196.9 million.[6] The walk raises support by having current ALS patients, families, friends, and caregivers create teams that walk and collect donations that go towards supporting the association.

The "Ice Bucket Challenge" is a campaign to raise awareness about the disease. Participants get a large bucket of ice and water poured over them, post video of the activity on social media, and then nominate someone else to do the same within a set time frame (typically 24 hours) or make a donation to ALS.[7] As of August 24th, 2014, the ALS Association has reported that during the time period that the "Ice Bucket Challenge" has become popular (July 29 to August 24), $70.2 million have been donated.[8] This is compared to having $2.5 million donated during the same time frame in 2013. Additionally, the association has more than tripled their total donations for the entire year of 2013 (just over $18.1 million) during this 5 week period.

References[edit]

  1. ^ "The ALS Association". alsa.org. 2014. 
  2. ^ The ALS Association’s TREAT ALS Program (Translational Research Advancing Therapy for ALS)
  3. ^ The ALS Association St. Louis Regional Chapter. "Quick Facts About The ALS Association". Retrieved 2014-08-19. 
  4. ^ Full List of ALS Association Chapters
  5. ^ "Quick Facts About ALS & The ALS Association". 2012. Retrieved 2014-08-24. 
  6. ^ "Walk to Defeat ALS". 2014. Retrieved 2014-08-24. 
  7. ^ ALS Association (August 6, 2014). "Have You Heard about the 'Ice Bucket Challenge?'". Retrieved 2014-08-19. 
  8. ^ Carrie Munk (2014). "Ice Bucket Challenge Donations Reach $70.2 Million". Retrieved 2014-08-24. 

External links[edit]