Amyotrophic Lateral Sclerosis Assn

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

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.

DO NOT DONATE TO THIS SCAM UNDER ANY CIRCUMSTANCES!

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.

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

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

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!

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.