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Amyotrophic Lateral Sclerosis Assn

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Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases, Voluntary Health Associations & Medical Disciplines

Mission: Leads 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.

Programs: Research programs - the association funds scientific research grants to doctors/scientists to find the cause and cure of amyotrophic lateral sclerosis (als). During the year ending january 31, 2015, research grants were $12,918,711, which almost doubled the amount of research grant funding from the prior year. The significant increase was made possible by the ice bucket challenge (ibc), an organic fundraising event that empowered individuals to raise awareness and funds for als by pouring ice water over their heads and challenging their friends to do the same. The association was the main benefactor of this event and received approximately $115 million in contributions as a result. Because of the success of the ibc, the association plans on further increasing research funding in ensuing years with the goal of spending over $20 million annually on research.

patient and community services - the association's national care services department, in working with the association's network of chapters, is committed to providing fully developed, managed and evaluated programs and services to people living with als, families, caregivers and professionals across the united states. Programs incorporate the perspectives from key stakeholders including people living with the disease, subject matter experts, clinical best practice, caregivers, technology, academicians and research. Activities address current needs and explore future services, creating a foundation for innovative and advanced program development based on specific community needs and knowledge advancements. Specific activities include (1) developing and implementing clinical and professional education programs based on ongoing needs assessments and best practice; (2) implementing certified care center certification and recertification programs based on nationally-recognized standards of practice, including grants to support centers of excellence; (3) developing strategies and actualizing plans to deliver care through 'other than' certified centers; (4) providing current information, resources and referrals to the communities we serve; and (5) developing and implementing comprehensive, consistent programs and services that address individual, family and caregiver needs based on 'best practice' and available resources. As a result of the success of ibc, the association was able to provide grants of approximately $8. 5 million to its chapter network to help support chapter initiatives for the year ending january 31, 2015. In addition, the association provided approximately $1. 1 million in grants to its certified treatment centers of excellence.

public and professional education - the association's public policy department develops awareness and understanding of als and the work of the association among the general public, healthcare professionals, the scientific community and elected and other government officials. For the year ending january 31,2015, the association worked with congress to continue funding for the national als registry and the als research program at the department of defense as well as funding for als research at the national institutes of health. The association also worked with congress to help ensure access to speech generating devices and advance the development of new treatments for als by working to pass the moddern cures act.

Community Stories

8 Stories from Volunteers, Donors & Supporters


Rating: 5

With my amyotrophic lateral sclerosis (ALS), the first thing that happened almost 2 years ago now, was speaking as if I were drunk. I wasn't. I initially did improve speech (articulating clearly but slow) but now I can no longer speak in an acceptable way. Then, a year later eating became problematic, I was biting my tongue and lips, and chewing became weak and less controlled. Soon after that some fingers started to fail me and things would drop out of my hands. Somewhere at that time bulbar ALS was diagnosed. The Rilutek (riluzole) did very little to help me. The medical team did even less. My decline was rapid and devastating.. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment, Our care provider introduced us to Kycuyu Health Clinic ALS/MND herbal treatment. The treatment is a miracle.i recovered significantly! Visit www. kycuyuhealthclinic. com


Client Served

Rating: 3

Admittedly broken hearted that my husband died of ALS after using all available treatments that are used today. I didn't have the guts to "unplug" him as he lay in his hospital bed for over a year with a trek tube protruding out of his throat and numerous smaller tubes connected to his body overall.....I wish this deadly disease will soon be wiped out and the cure found for those who are still suffering. I feel so helpless, I am not a scientist but hoping what little I have left to give will help those who are trying to solve the mystery of this crippling, horrendous disease.

Review from Guidestar


Client Served

Rating: 1

Despite the flashy media engagement and expensive PR campaign, the leaders of this organization continue to squander the largest windfall of charitable donations in history, known as the "Ice Bucket Challenge".

This organization continues to ignore the most promising new therapies which SHOULD be available by now (had they been pursued 4-5 years ago), and insists on endless fundraising trickery and gimmicks like "take a pie in the face for ALS" in order to support its compensation expenses, which increased by $500,000 last year. There seems to be a "we'll do whatever we want" attitude coming from this organization", and it continues to focus on anything other than what ALS patients want more than anything else: TREATMENTS for this chronic illness.

There is no possible way anybody should support this organization. The employees and executive team are grossly underqualified, and most have been "through the chain" of other fundraisers and arrived at what certainly must be the ultimate "cush" job- raising money on the backs of terminally ill patients who cannot defend themselves, because they are dead before they realize that they have been suckered into supporting an organization which to date, has STILL never funded a single FDA approved ALS therapy. That's an absolute fact.

In addition, in 2016/17, it appears that a fake "initiative" was started for the third person responsible for the ice bucket challenge (who I will not name because of health) whereby a $1M donation was given upon the excuse that his health care expenses had risen to $95,000 per month, a SHOCKING amount by any account. This $1M was donated by a wealthy individual, and "passed through" the ALSA tax exempt machine, thereby skirting what would have undoubtedly been hundreds of thousands of dollars in gift tax due. To date, no IRS investigation has taken place over this transaction, which many people feel is absolutely indicative of the way ALSA does "business as usual". It also forms ENDLESS partnerships with the companies who benefit from people's misfortune, from wheelchair manufacturers to ventilator companies, all who become "financial partners" with ALSA. Recently however, a huge question has come to light over ALSA's relationship with Mitsubishi Pharma, a company which manufactures Radicava. It appears that ALSA is now unable to publicly support a new, promising therapy called NurOwn, which has REVERSED the symptoms of ALS for the first time ever in people with ALS and is currently in Phase III trial. The fact that NurOwn remains out of reach for people with ALS will result in thousands of people suffering a horrific death, and ALSA remains quiet on its total lack of support of this amazing new therapy.


Review from Guidestar


Client Served

Rating: 2

Would donate to local chapters that provide services, but national organization is inept and self-perpetuating rather than mission-driven. If you wish to support ALS research, would suggest an academic institution/specific lab or project directly.


Client Served

Rating: 4

I am the daughter and a caretaker of my mother who is in advanced stages of ALS. We have benefitted directly from the services of this organization and those of the local chapter as well. I also formerly operated 2 national non-profit organizations. I am disturbed by some of the negative comments I see here and that I have seen online claiming the ALSA uses only about 20%-22% of its funding for services/research. If you look at the financial statements, that simply is not the case. The statement on this site for the fiscal year ending Jan 30, 2012 shows 67% of funds spent going to program services, 22% in fundraising, and 11% to administration. Program services are the main efforts of the organization: ALS Research, ALS Education and Awareness, and ALS Patient and Community Services. These are the activities the ALSA promotes as their primary function, and they are spending their money consistent with that purpose. 22% went to fundraising and while that may seem like a lot, it takes a great deal of effort to get charitable contributions, especially for a less common and less known disease in tough economic times. They must compete with many other “causes” for donations; and getting a one-time donation is one thing, but turning that into a consistent donor is key to PROGRAM stability. Keep in mind that none of the PROGRAM SERVICES – Research, Education/Awareness, and Care/Community Services can happen if they don’t have money – so the fundraising budget is extremely important! The Administrative expense of 11% is very reasonable – somebody has to managed the general affairs and business of the organization, oversee personnel and programs, oversee funds and budgets, etc. Also, if you look at the tax returns/annual reports of the ALSA you will see that in addition to their paid staff (nearly every association or foundation of large scope has paid staff – skilled, hardworking people who need to earn a fair living in exchange for work they perform), they operate with the support of many volunteer hours from their board and many others who give time to the organization. Moving to 2014, the most current financial statements for the period ending Jan 30, 2014, the numbers look even better: only 7% Administrative expense, 14% Fundraising expense, and the remaining 78% to Program Services (I know that’s only 99% - the numbers rounded down make 99 rather than100). http://www.alsa.org/about-us/financial-information.html
With the ALS Ice Bucket Challenge going on and so many generous donations coming in to the ALSA, there is an unprecedented opportunity to fund much needed research and services. This means hope, assistance, support, and advocacy for many people with ALS, like my mother, and families like ours who are dealing with the effects of this disease minute by minute. I think it is important that people have correct information. Don’t believe anybody’s comments. Study the financial and annual reports and tax returns yourself if you are concerned. They are here and on http://www.alsa.org

Review from Guidestar



Rating: 1

A charity taking 80% of your donations for salaries and expenses. I don't think it gets much more scummy than this.

Review from Guidestar


Client Served

Rating: 2

It is more than disappointing that there has been no improvement since my 2011 review. In fact I would rate the 60% program expenses as deplorable. It is sad to see such poor performance as a client/ALS patient and fundraiser. For shame!

Review from CharityNavigator


Client Served

Rating: 2

Good mission, badly needed services for its clients made up of terminally ill ALS patients. Disappointing trend in all aspects and particularly in view of the superb performance of some of the chapters who are more successful in demonstrating responsible management and keeping patients at the center of their policies and practices. What is especially disturbing is that these well managed and rated chapters must send some of their hard earned revenue to the headquarters.

Unless there is significant improvement this organization does not deserve to continue as the national leadership/

i write this as a patient with ALS or, as it is also known, Lou Gehrig's disease. My servicing chapter has an excellent record.

Review from CharityNavigator