Stem cell Research in Toronto

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Very very interesting. I sincerely hope benefit comes from this. From the wording on the site, it sounds like ALS Canada is not linked to this in any way (sadly). I would think ALS Canada would want to be involved in fundraising efforts for this.

Many thanks
 
...funny you mention that, SK. I know that some (if not more) involved in this project were *furious* that ALS Canada - from the best of my knowledge - denied a grant to help fund this project. They haven't given a single cent to date. Unbelievable given the huge potential this project offers.

At the presentation, one of the best things I heard was that you can have this procedure done *several times per year* because it is non-surgical.

At this point, we just need it to work with mice.
Cheers.
 
I kind of got that impression from the website that there was some issue there, which is why I mentioned it. I await the results with great interest.
 
This looks interesting. However it reads more like advertising than a scientific paper. I hope it works.
VIncent
 
However it reads more like advertising than a scientific paper

I think they had to ask for donations whenever they could given the lack of funding from ALS Canada. I looked for information to post that contained less "advertising" although it didn't exist.
 
ALS Association USA still has over 100 million in their coffers, what are they waiting for? Even if this is funky, sounds like an inexpensive try. I say start giving money to deals like these, stop spending millions in fancy labs, messing with mice - I'm fed up with that. We aren't mice.
 
I suspect that the US ALS Association cannot give money to a Canadian effort.
 
...I'm right with you on that one Kenschatz. When I read the Tirasemtiv consent, the last page said that patients would be on the drug for 1 year, and it would take 3 years for a full report. 3 YEARS.....THREE YEARS??? We'll be dead in 3 years, let alone do a trial for a substandard drug at that. The bureaucracy is infuriating to me....I liked how that episode of Vice covered that.

at the presentation for this project, there was much talk about human trials and what would be involved in the selection process....that said, the docs made it clear they had to be very very careful... that if someone, for example, developed a tumour if something went wrong, then Health Canada would shut everything down. As much as I understand that, I will say that the consensus in the room was no one cared about that risk. If I could have had the procedure done that day I would have gone for it. It's a CYA world. I will say though, that ALS Untangled is an exception.
 
GregK I suspect that the US ALS Association cannot give money to a Canadian effort


I'm thinking they can do whatever they want with it. They have their own bylaws as a 501 charity. But them having that much is insane!
 
...I'm right with you on that one Kenschatz. When I read the Tirasemtiv consent, the last page said that patients would be on the drug for 1 year, and it would take 3 years for a full report. 3 YEARS.....THREE YEARS??? We'll be dead in 3 years, let alone do a trial for a substandard drug at that. The bureaucracy is infuriating to me....I liked how that episode of Vice covered that.

at the presentation for this project, there was much talk about human trials and what would be involved in the selection process....that said, the docs made it clear they had to be very very careful... that if someone, for example, developed a tumour if something went wrong, then Health Canada would shut everything down. As much as I understand that, I will say that the consensus in the room was no one cared about that risk. If I could have had the procedure done that day I would have gone for it. It's a CYA world. I will say though, that ALS Untangled is an exception.

I completely agree and this has been my criticism since the beginning. There is no sense of urgency in these trials. Here's my idea for a clinical trial. Do due diligence in the lab and in animal trials.

Phase 1. Get 10 or 12 PALS give them the drug for one month. Adjust the dose if adverse effects present. Monitor again at three months. If no adverse effects, and at least a small hope of efficacy, phase 1 is over.

Phase 2. Get 200 PALS, monitor the results at one three and six months. Adjust the dose if deemed necessary or helpful. At six months, does it work for a substantial percent (10% or more) of patients ? If no, move on. If yes, within 30 days it should be available to all.

No placebos, no years of study. Study can be continued while the drug is available.
 
No placebos, no years of study. Study can be continued while the drug is available.
That would indeed be nice, but ...

Have you ever seen daytime TV?

Class action lawsuits over anti-clotting medicines, testosterone, clot filters, and even talcum powder. In the US people sue at the drop of a hat. Unlike the rest of the western world there is no penalty for frivolous lawsuits. At this moment Cinemark is getting bad press for trying to recover the almost $1M it spent after being sued for not preventing the Aurora shooting.

You'd be a fool to bring a drug to market without doing everything possible to test it.

Scream Big Pharma and FDA all you want, but blame lawyers and American societytoo.
 
I agree, but how hard would it be to get PALS to sign a release agreement. There should be a difference between testing for ALS treatment and an acne medication or hair restorer.
 
I’ve often wondered about this myself. I’ve drafted many, many release agreements in my (albeit relatively short) career, and from a legal perspective, they’re usually rock solid. My guess is that the code of ethics of the medical professional associations, and/or applicable regulations/legislation governing the practice of medicine, prohibit or at least severely restrict physicians from administering orphan drugs or experimental treatments even if the patient agrees to release, indemnify and hold harmless, etc. (although I’m sure some jurisdictions are more flexible than others.) If this is the case, a carve-out for terminally ill patients would be nice……
 
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