ALS Association
 | |
| Motto | Create a world without ALS |
|---|---|
| Founded | 1985 |
| Type | Non-profit |
| Focus | Research, Patient Aid |
| Location | |
President and CEO | Barbara Newhouse |
Revenue | $29 million (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.
Research
The ALS Association has committed more than $100 million to find effective treatments and a cure for Lou Gehrig’s Disease. Their global research effort has helped increase the number of scientists working on ALS, advanced new discoveries and treatments, and has shed light on the complex genetic and environmental factors involved in ALS.
Their Clinical Management Research Program focuses on managing the care of people with ALS in such areas as nutrition, respiration, mobility and psychosocial needs. Since 1998, The Association has funded 22 clinical management research projects representing a total commitment of $750,000.
TREAT ALS Program
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 Scientific 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 Association also partners with other scientific and voluntary organizations to host symposia on neurodegenerative diseases where mechanisms of the diseases may be similar and offer clues to understanding ALS.
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 and Public Policy Department of The ALS Association. Based in Washington, D.C., The ALS Association 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 Public Policy team also organizes The ALS Association’s National Advocacy Day and Public Policy Conference, held every May during ALS Awareness Month. 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. During this yearly event more than 800 people from all states join The ALS Association in Washington, D.C., 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
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
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 more than $220 million.[6] The walk raises support by having current ALS patients, families, friends, and caregivers create teams that walk and collect donations that support The Association's programs and mission.
The "Ice Bucket Challenge," a campaign started by families living with ALS to raise awareness about the disease, greatly benefited The ALS Association, among other organizations fighting the disease. Participants get a large bucket of ice and water poured over them, post a 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 fight ALS.[7] As of August 24, 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.
Controversies
Following the 2014 Ice Bucket Challenge, the ALS Association attempted to trademark the term "ice bucket challenge". Following backlash, the Association withdrew the trademark application.[9]
References
- ↑ "The ALS Association Annual Report" (PDF). alsa.org. 2014.
- ↑ The ALS Association’s TREAT ALS Program (Translational Research Advancing Therapy for ALS)
- ↑ The ALS Association St. Louis Regional Chapter. "Quick Facts About The ALS Association". Retrieved 2014-08-19.
- ↑ Full List of ALS Association Chapters Archived April 29, 2009, at the Wayback Machine.
- ↑ "Quick Facts About ALS & The ALS Association". 2012. Retrieved 2014-08-24.
- ↑ "Walk to Defeat ALS". 2014. Retrieved 2014-08-24.
- ↑ ALS Association (August 6, 2014). "Have You Heard about the 'Ice Bucket Challenge?'". Retrieved 2014-08-19.
- ↑ Carrie Munk (2014). "Ice Bucket Challenge Donations Reach $70.2 Million". Retrieved 2014-08-24.
- ↑ Ohlheiser, Abby (August 30, 2014). "ALS Association withdraws controversial applications to trademark 'ice bucket challenge'".