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Scotiaspirit

Distinguished member
Joined
Nov 21, 2015
Messages
209
Reason
PALS
Diagnosis
11/2015
Country
CA
State
Nova Scotia
City
Dartmouth
I was reading about an organization called ALSWORLDWIDE dot org who purports to work with ALS Patients, their families and healthcare providers. One of my local PALS friends has parted with a considerable sum of money, for some of their supplements and treatments. I have read somewhere where this may be a scam?

Has anyone heard of this organization, are they reputable? I cautioned my friend to be buyer beware, but I beleive the PALS I know already sent funds to them for a couple of their products.

Personally, I would be cautious before buying products and from a group never mentioned by our local als society.

I certainly hope my friend and her family were not conned. Thanks.... Smitty
 
The founders/ main players are the parents and sister of a late PALS. I believe they mean well. My sister dealt with them early on and the three things they helped with or recommended were all reasonable for the knowledge we had then.

Their current list of symptom treatments looks reasonable except for a diaphragmatic pacer.

I have disagreed with some of their research fundraising and I have no contact with them but I don’t think they are a scam exactly

He was enthusiastic about Chinese stem cells for a time and there were some extremely bad outcomes. I don’t think it was malicious but very misguided

What did your friend buy? Were the prices inflated?
 
I am less sanguine than Nikki. I don't think they are serving PALS well, whether out of ignorance, avarice or both. You can see tracking code on their commercial links, like their recommended mask. In fact, on that NIV page, it makes statements like most pulmos only recommend PAP during sleep only! That is flat out harmful information, sorry, and there is more of the same all over the site.

Drugs like quinine (and there is a lot of drug info without very essential caveats) are not even spelled correctly nor are the sentences always coherent. It is almost like reading writing paid by the word, and clearly some of it's click bait.

I am on their mailing list and there is a lot of snake oil in both content and tone. Anyway, that's my 2 cents. At some level, with ALS in the family, they must be sincere, but maybe somewhere it went off the rails or they were poorly advised.

Best,
Laurie
 
I perused their web site and was not impressed. Recommending Boost for tube feedings/nutrition immediately turned me off.

It looks like their information is very out of date (except for the mention of Radicava.)

I've found much more current and useful and accurate information on this forum and on Facebook.

I didn't get into the financial aspect because I'm not sure how much in donations they collect and how much they give out.
 
I see so many shady bait and switch traps that try to sell false hope. I recall another PALS that I knew locally, he warned me of something called Deanna's protocol, Ed Bingley's (sp?)(may have name wrong) about getting all amalagam fillings removed which can cost tens of thousands of dollars. I recall earlier in my dx, one searches for treatments and hope, and when we are aware of a terminal dx, we would search every corner of the earth for a cure, or treatment to prolong life. Truth is, there is no known cure for ALS. We all wish there was one. These folks claimed they had something nobody else does, but see no accredited recognition or referal from the American Medical Association or similar body for treatment of ALS. I remember seeing a 60 minutes program about ALS patients paying tens of thousands of dollars for bogus treatments, unproven stem cell treatments etc. IMO, if something sounds to good to be true, it probably is NOT true!
 
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ALSWorldwide claimed to have a unique treatment? I take back my comment about meaning well if so
 
What did your friend buy? Were the prices inflated?

I am unsure what products they purchased. One thing I read on the ALS Worldwide website, is "ALS Worldwide does not offer or purport to offer medical advice to ALS/MND patients", I suppose it releases them of liability of prosecution should their products cause injury or do not work.

I have never heard anyone at our local als society or clinic mention this organization, and it may not mean, it has not been mentioned to other PALS and CALS. Perhaps I am hyper cautious, but this disease does a fine job at emptying or diminishing bank accounts.
 
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