HDT testing at Fox Foundation in NYC

[mariecoppola]

I believe that someone suggested that the Fox Foundation for Parkinson's Reasearch is considering a double-blind study for high dose Thiamin supplements. Does anyone have information about that? Are they looking for subjects?

[Hidden]

I'm curious as to what this would look like, given that the anecdotes regarding successful B1 use usually refer to the need for significant experimentation and dose adjustment and then a need to reduce the dose at some patient-dependent date in the future.

[mariecoppola in reply to Hidden]

I am also curious about how this will be done.

[Despe in reply to Hidden]

Please keep your pessimism to your self and don't be sarcastic to your fellow PwP.

[jimcaster in reply to Despe]

I don't think Horace99 was being sarcastic or pessimistic. It's a good question. Given the variability of the doses we take, what dose would researchers test?

[ParlePark in reply to jimcaster]

I would think that criteria would have been provided within the application.

[Despe in reply to jimcaster]

Jim,

He is not quite a natural remedies proponent. . .

". . .given that the anecdotes regarding successful B1. . ."

[Hidden in reply to Despe]

What a bizarre thing to take issue with. People posting on this forum about their B1 experiences is literally what anecdotal evidence is.

[Despe in reply to Hidden]

You might want to consider taking it! Then talk about your own "anecdotal" experience.

[Hidden in reply to Despe]

What a strange and completely unecessary derailing of the thread.

[narcisa956 in reply to jimcaster]

Hi, Jim! A couple of months ago we exchanged a couple of messages here on HU. As I am also quite new (diagnosed a year ago), and remembering that you are only on supplements, with few symptoms, I wonder how you are doing at the moment

I was against any medication at first but my children convinced me to start. I am taking Azilect (MAO inhibitor) + 1000 mg of thiamine (injection per week) (3 months now). I see no changes but hope I am doing sth good for myself in the long run....

Best of luck !

Mojca

[jimcaster in reply to narcisa956]

Hi! I'm doing well. I'll send you a private message.

[Hidden in reply to Despe]

?

[Pa-zzi69]

I am forwarding your question to a Matt Ackerman who is supposedly part of a PWP consulting committee at the Michael J Fox foundation.

[mariecoppola in reply to Pa-zzi69]

Thank you. If they are in need of participants, my husband would like to take part in it.

[chartist]

To the best of my knowledge, I believe that Dr Colangeli, an associate of Dr. Costantini, is still working with the MJFF to see if they can fund or help fund such a study. Apparently that process is complex and lengthy, but at last posting to this forum, Dr. Colangeli seemed positive on the prospects up to that point, but he has not updated since then.

It should be noted that MJFF does not do the actual studies, but is mainly involved in contributing to the funding of such studies. In that case, Dr. Colangeli would need to also locate a suitable outfit to conduct such a study and he would likely need to work with them to design such a study based on what they currently know about HDT/B-1. Study design in itself can take some time to scrutinize and complete.

In the meantime, some people have chosen to test HDT/B-1 based on a fairly good safety profile and the results of some members on this forum as well as Dr. Costantini's reported results from his patients in Italy as well as his email patients from around the world.

Art

[mariecoppola in reply to chartist]

Was this information posted on the Facebook page?

[chartist in reply to mariecoppola]

I am no longer a user of Facebook, so I have no idea.

Art

[Despe in reply to chartist]

Hi Art! I have been expecting to hear about this B1 trial for some time now. I hope it materializes, especially for people on this forum who have donated to this cause.

[chartist in reply to Despe]

I agree, Despe!

Hopefully Marco will update soon. I understand he is a very busy guy, but he did say he will continue to update as he has information. I tend to get a bit pessimistic when it comes to things like this, but at least there is a conversation going with MJFF, which is more than I ever expected!

Art

[bepo in reply to chartist]

I would fall over if the MJF foundation studied a non-pharmaceutical. They,

presumably , receive funding from pharma. There is tons of money to be made on drugs for parkinson's.

I was on a podcast several years ago, where questions were asked of the MJF foundation. I asked about natural therapies. It was never considered to be part of the conversation. The totally dismissed anything that was not pharma related.

[fifthbird in reply to bepo]

Something similar happened to me on an MJF foundation webinar a couple months ago. It was about studies of new therapies and I asked if there were any upcoming HDT studies. They ignored the question and didn't respond to me later, even though they said they would respond later to anyone whose question didn't get answered during the hour.

[bepo in reply to fifthbird]

Absolutely. They won't address natural therapies for a reason. They are a means of promoting big pharma.

[Hidden in reply to bepo]

This is complete nonsense. Stop spreading this conspiracy theory rubbish.

Go to the MJFF website. Find the annual report. Go to the page that lists the donors.

In the time it took you to write this post where you base all of your flawed conclusions on your original flawed presumption that they are funded by big pharma, you could have learnt that they arent.

By far the biggest donor ($25m) in that annual report was Sergey Brin. His mom has PD.

[lenamm in reply to Hidden]

Sergei is also LRRK2 positive so a lot of motivation to find a PD cure. Happy to have one of the richest men in the world helping find a cure with his money!

[bepo in reply to Hidden]

Thank you for posting that.

[Pa-zzi69]

Matt Ackerman responded: " I am unaware of such a trial, but I am not tracking any trials (other than those that I am in)...I would suggest that anyone interested in a trial first search the Fox Trial Finder. It is tool that Fox makes available to the public, but the gating factor is that this tool is entirely dependent on the researcher entering information into an FDA database (or if it is not FDA it Federal Government). I searched at and did not see a study on Thiamin, but would be a bit surprised if this hasn’t had a trial designed about it given the depth of discussion that has occurred... I will be attending the MJFF patient council meeting in the last week of March..."

[mariecoppola in reply to Pa-zzi69]

Thank you for that information. We are on the Fox trial finder. I will be watching closely for any new information.

[bepo]

I would be extremely surprised if the MJF group would test a non-pharmaceutical. Follow the money!

[mariecoppola in reply to bepo]

I need to find the article. It stated that double-blind testing would begin this year and finish in 2022 for thiamine as an add-on treatment for Parkinson's. No one saw this, I presume?

[Hidden in reply to bepo]

Prepare to be extremely surprised.

They have funded multiple exercise trials with several million dollars.

[bepo in reply to Hidden]

Thank you. I am surprised,

[ParlePark in reply to bepo]

You are wrong Bepo. They funded Inosine, a food supplement which by the way failed. I was actually a participant in the study. There is an application in process for B1.

[mariecoppola in reply to ParlePark]

Do you know anything about that application?

[ParlePark in reply to mariecoppola]

Not yet, I understand its a pretty intensive app. Lots of people competing for funds. Marco put a thread out when it was submitted though.

[mariecoppola in reply to ParlePark]

Let's hope this gets the attention it dessrves.

[bepo in reply to ParlePark]

Thank you. I am always learning more; getting educated.

[lenamm]

I talked to someone recently in the PD community who was asked to head a trial on B1. After looking at the extreme differences in doses and administration they declined because it seems impossible to structure a trial. So yes MJFF is looking and considering.

[mariecoppola in reply to lenamm]

Thank you. I was beginning to think that I was misinformed. I don't care for the accusation that I was spreading conspiracy theory rubbish. We are all in this together are we not? Ughh... I just want the best for my husband and anyone else that is suffering.

[Hidden in reply to mariecoppola]

If you are referring to my mention of conspiracy theory rubbish, please note I was responding to a poster that erroneously claimed that MJFF was an arm of big pharma.

[mariecoppola in reply to Hidden]

Got it.