I have been reading as much information as I can find. I found this information regarding a billionaire from Texas who is piling a TON of money and hiring top scientists to fight this F****** disease. star-telegram.com/news/loca...
There is some interesting stuff and if you check out "Tau consortium" there is even more. I thought this is positive. Has anyone else seen any of this?
For those of you who are not familiar with my title I am advocating for my father who has PSP. He is still doing very. We did some work in the pool today actually.
Anyways information is power and lets keep up the good communications. Did anyone else look into the recommendation "hidden" made about the supplements that come from California? I found some on Amazon and it looked a little dubious to me, but I have been wrong before.
Hope you all are well.
M
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The special form of B12 (Methyl form) contained in this product is the only one capable of crossing the BBB (Blood brain barrier).
So it could well be possible that this special form of B12 could have a positive effect on the brain. By a completely unknown mechanism, I agree.
But it would not be the first time that anew treatment would come from a simple observation made by a non-expert.
I learned after a very long career as a Technology Manager never to underestimate the potential of simple observations made by non-experts, on the positive or negative side.
Hi loustalet the person that was on about the supplement and got everyone excited was a troll that stated he was unable to move talk or eat and yet was still able to look after himself. Then tried supplements and was basicly cured.
And when he was asked to many questions he got abusive. He had a little bit of knowledge about psp but made a lot of things up. Was quite a upsetting time for a few people. That person has posted since under a simular name. 1st posted as timurinsaneman (name says a lot) then he came back as timinsuranceman and he got very abusive when he was asked had he posted befor.
Hope your trial goes well and keep posting so we can perhaps try it on our loved ones.
Thanks for sharing...good read, not only for the money but for researchers sharing and problem solving together. As far as the supplement mentioned, it is for nerve pain. I did look it up and read the ingredients. Some were very similar to ingredients recommended for my husband due to low b12 and high homocysteine levels.......may not have anything to do with psp but trying to help some symptoms . .....those individual differences among ant type of medical category.
I am wondering why this is coming up now in the news, since the Tau Consortium was founded a few years ago. I wonder where the "new" news is. I believe they are also tied in with University of California at San Francisco, which you will find does a lot in this area.
"New" News, is a way of keeping everyone quiet! It makes them look as if they are on the case and get extra money. Unless, you keep reading every article published, most of us wouldn't have a clue, if what they say is true or not!!!!
Thanks for sharing! Glad to know there is someone out there willing to spend millions to cure this disease. I would do the same, if I have the resources. My wife has been a part of 2 clinical trials and unfortunately no positive results. But no adverse side effects either. I encourage others to research what's out there and participate if you can. Not only may it help you, but many others in the future.
Thank you for asking your question about The Tau Consortium funding .
PSPA doesn’t employ researchers, instead we invite researchers to apply to us for funding for relevant projects. All applications are subject to a rigorous review process.
This means we wouldn’t be in a position to bid for Tau Consortium funding. However we are very much aware of the consortium and keep a close eye on its findings. In fact one of the researchers quoted in this story, Adam Boxer, has attended a number of PSPA events.
We believe collaborative approach to research is vital if we are to unlock the mysteries of PSP. The Tau Consortium brings great hope to all of us striving for a world free of PSP.
Hi, how do you get involved with any of this research. I'm sure My husband would love to participate. Give him some serious mental stimulation, to feel he was actually doing something, that would help.
Thanks for reply, understand your point of inviting researchers to apply for funds. A suggestion may be anyone who applies for your funds are informed that there are other sources of funds aimed at PSP relief such as Tau Consortium et al, that they could also apply for.
Through this board, I came across the clinical trial with Salsalate managed by Adam Boxer. Since this product is commercially available, I decided with my wife (who is the sufferer) to go ahead and test it. We feel we are able to take such decusions after having read tons of documents on the subjet. I am a PhD with long experience of managing big research organisations and my wife is pharmacist. We informed our neurologist about thisdecision and he supports it.
The main reason for this decision is that most probably, treatments that could have a positive effect will not reverse the damages that have been done to the system. Although this is not definitely impossible. They may stop the evolution. So it is extremely important that the treament can be started as early as possible.
Our dilemma was: wait for the clinical trial to conclude and if the conclusion is positive, go ahead. Presumably 2 to 3 years later!
Or just go ahead and take some risks (not too high, the negative effects of NSAID are well known) but may be stopping the progression of the damage 2 to 3 yearsearlier! Easy answer if you want my opinion.
I wrote to Adam Boxer in charge of the clinical trial to inform of our decision and ask a few questions on the various possible sources of salsalate as we live in Europe and the product was only available in the US. No answer.
I understand that he has to be very prudent but in a case like this, I wish these guys would understand a bit better the terrible condition of the people who have the problem.
Hence my question/suggestion that goes against all the rules:
Without encouraging anyone to do it, why not organising a monitoring of these "clandestine" trials done under the full responsibility of those who decide to do it to accelerate and/or enrich the results of a clinical trial.
The same would apply to this vitamin supplement.
To-day the "testing" is totally disorganised and some of the proponents suffer total scorn from some of the professionals. I can understand for the reasons you mention in your post. But why not organizing a mini monitoring of the effects of the product?
I am absolutely convinced that there is an enormous reservoir of observations among the sufferers of this problem (and of many other health problems) that is not exploited, not even considered even less respected.
After many years managing research, I learned that very often innovation comes from observation, observation with humility by people with no special academic credentials. Having respect for these people, listening carefully to what they have observed can lead to new avenues of work, sometimes totally unexpected.
Should PSPA help in that respect?
Some people say if it works, we would have known for a long time. If we don't it means it does not work. No need to waste time on that. The people who say that do not have real experience of research and innovation. Period. Most innovations in all disciplines come from unexpected places and people.
A final comment. Finances come when there is expectation of developing a molecule that will generate big profits. I have no problem with that as long as it does not kill the efforts targetting molecules already on the market on which it will be very difficult to make money. And sadly this happens more often than you think.
Again this is an area where PSPA could help. Becoming the collector of people experience and observations, organizing and monitoring these people observations and then interacting with the real researchers.
Thanks so much for sharing the information on the Tau Consortium. I am constantly reading everything I can find online and have not come across this. Finally a glimmer of hope....
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NO PSP Association in Canada
Biogen/BMS Anti-Tau Phase 2 Trial Recruiting
Fatigue
Cause of PSP....reflections:
