Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
There have nasty rumors and accusations circulating so, they answered back! Here is the truth:
Accusation: ICE BUCKET FRAUD: ALS FOUNDATION ADMITS THAT 73% OF DONATIONS ARE NOT USED FOR RESEARCH
Fact: The ALS Association spent 79% of our annual budget on programs and services last year, which includes 28% on research, ONE of three main pillars of our charitable work (see below for breakdown). If a donor would like 100% of their donation to go to research, he/she can simply check a box on our online donation form here. If a donor already donated and would like to redirect their donation, please email us at email@example.com.
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Accusation: Over 73% of all donations raised are going to fundraising, overhead, executive salaries, and external donations. Less than 27% is actually used for the purpose we donated for.
Fact: Fundraising and administration costs represent a very small portion of The ALS Association’s annual budget. Additionally, The Association has a three-pronged mission. So, in addition to research, we also spend money on care services to people living with the disease and public policy initiatives to encourage the advancement of legislative policies that benefit ALS families. Again, we spend a total of 79% on programs and services. You can view the breakdown of these expenses here and learn more about our work here.
Accusation:According to the ECFA, a charitable watchdog, 27% of donations actually making it to the cause they are donated to is unacceptable. In fact, the ECFA won’t deem a non-profit as a reliable charity unless at least 80% of donations make it to their intended projects.
Fact:Any charity that only spends 27% of donations on its programs and services would not be in good standings with the nation’s top charitable watch dog organizations. The ALS Association has a four-star rating from Charity Navigator; we are “Top Rated” on Charity Watch; we are a Better Business Bureau accredited charity; and we are a Guidestar Exchange gold participant. We encourage you visit each of these credible websites to gather more information about our organization.
Accusation:Employee salaries at the ALS Foundation are out-of-this-WORLD!
Fact:The salaries of our executive staff are in line with the job markets where they are located—and in line with those of other national charities. Salary review is part of the accreditation process for the watch dogs mentioned above and is a requirement of the National Health Council (NHC), of which we are a member. In fact, The ALS Association is the only ALS charity that has qualified for membership. Read what this journalist has to say about The ALS Association’s executive salaries: “they are all well within the range of nonprofit salaries; the compensation for ALSA’s CEO compares favorably with that of his peers, including some who run low-performing nonprofits.”
Accusation:The ALS Foundation is a terrible organization to send your money
Fact: The ALS Association is a credible charity with the highest ratings from four independent charity watch dog organizations.If you decide to take the Ice Bucket Challenge, may I humbly suggest that you select a well-researched charity (on your own, no endorsements here) and send it to them.
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T he ALS Association is committed to transparency and encourages people to research not only our organization but any organization to which they are considering making a donation. We put together a Frequently Asked Questions document to help navigate through our various financial documents. The ALS Association has posted financial statements online here. Our latest 990 (fiscal year ending Jan. 2014) can be found here along with our financial statement for the same period. The Association’s latest annual report can be found here. To view the financial statements from each of the chapters, you can visit their respective websites. To find your local chapter, go here.
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