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Review for Amyotrophic Lateral Sclerosis Assn, Washington, DC, USA

Rating: 1 stars  

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.


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