Hi, Can anyone from Pbt2 trial tell if drug working? Thank You. Rob

I know there were at least a couple of study partners that post on the lighthouse, but with a placebo arm in the trial who is to say? I think we are all going to know the REACH2HD outcome perhaps early this very week - a stock halt has been issued pending news related to REACH2HD, effective until Wednesday or the release of news.

I hope and pray for the sake of all on the Lighthouse forum and their families suffering from HD, that some disease-modifying benefit is at hand. The science behind PBT2 seems so promising. There have been so many independent studies coming out implicating metal imbalances/dyshomeostasis as a key factor in HD.

Results show positive efficacy in some cognition factors:

[finance.yahoo.com]

And the Diana Rosas sub-study also showed a reduction in brain atrophy in the brain regions impacted by Huntington's. The Trailmaking-B test improvement was achieved previously in AD patients in their previous Phase IIa trial, and of course the IMAGINE trial results are due by the end of March. So it appears to have this benefit across both AD & HD, as was hoped.

Trial details from Prana. Both links have similar information.

Presentation style:
[pranabio.com]

Text version:
[pranabio.com]

Well, I have followed PBT2 and Pran a long time because of AD in my family. They all seem of such high integrity. However, Adam Feuerstein, the biotech short monster that works for the Street took issue w/Prana's trial, and appears that HDBuzzfeed is about to also put out a hit piece on the PBT2 trial. Of course, their findings are not published yet in a peer reviewed journal (one of their 4 issues), but I don't quite understand the motivation to call into question the trial findings until they have those findings published and they take the opportunity to look over what Ray Dorsey and the HSG publish. Why call everything into question at this point in time?

The trial was only a safety trial, so the cognition and trend toward reducing brain atrophy were all meant to guide the next trial, but if you read the twitter it seems they want to go after Prana just like Adam Feuerstein did.

So I suppose a negative article on PBT2 is forthcoming. I listened in on the conference call with Ray Dorsey and Ira Shoulson attending, along with Rudy Tanzi, whom I greatly admire. Ira stated the executive function improvement in the Trail-Making part B test has never been shown in any prior HD trial. It seemed encouraging to me, but apparently HDBuzz is not of this mindset. And it reads a little bit like an Adam Feuerstein blog.

I hope it's all objecting stuff coming from HDBuzz, but seems a bit like an agenda. Can we not hold a little hope out when something potentially promising comes along w/out tearing it apart? It seems before PBT2 they have done the same thing w/Creatine.

The following are all points taken from HDBuzz twitter. In the past Jeff Carroll has always written so many nice articles on PBT2, and all of the sudden this twitter feed reads a little biased, but maybe it's me that has rose colored glasses.


They say the following on the HDbuzzfeed on twitter:
(1) Many cognitive tests were measured. One of them improving is probably random chance.
(2) the subject numbers in the imaging substudy were TINY and we advise that those results be disregarded completely
(3) The only conclusion that can really be drawn is that the drug was safe and well tolerated.
(4) the trial results have not been published in a peer-reviewed journal. The company can claim whatever it likes at this point.

HDBuzz ?@HDBuzzFeed · 8h
Please treat this press release with extreme caution. HDBuzz article on the way.

DBuzz ?@HDBuzzFeed · Feb 18
We're preparing an article on the Prana / PBT2 trial announcement. Meanwhile, our advice is don't buy the hype...

Are these HDBuzz folks legitimate, as in no other conflicting interests? Just curious, because I know little about HDBuzz.

k, HDBuzz has put out their Adam Feuerstein motivated hit piece. At what point should a 501 c(3) charitable organization get in the business of trash blogging the trial results of potential medications for HD where the points are coming directly off of Adam Feuerstein's blog? AF is a paid hack employed by The Street/Jim Cramer, solely on wall street for the purpose to sell short and destroy the value of companies, stopping at nothing to do it. And HDBuzz joins in on this activity. It is a shame for a charitable organization to get involved at this level, in my humble opinion.

Sorry, but there are some questionable things in the piece that was put out. I have really enjoyed a lot of work that Jeff Carroll has put out, and I am completely surprised by this characterization without first some more proactive work to weed out things that were further clarified in Prana's conference call - which is almost everything in his article.

Prana Biotech was mis-characterized in the article, and by Adam Feuerstein, who is the one that made REACH2HD much more than the Safety & Tolerability trial it was, with some hopeful signals on secondary endpoints to guide future trials. It is sad to see HDBuzz joining into this agenda driven activity.

I think the authors should have at least listened to the conference call of Prana Biotech going over the results and available on Prana's website, where they discussed forthcoming peer reviewed publication, and perhaps listened to the Q & A on some of the other points clarified in their conference call. I don't know who this poster was, or if it is legitimate claim, but it was shared following the conference call. I listened to the conference call and do not recall any such testimony, but I was a bit late to the call.

You may all run me off the board now. If I am in the one in the wrong, I sincerely apologize for my honest feelings.


atpahiker • Feb 18, 2014 8:57 PM

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Father of HD Daughter
.

I was on the conference call tonight with many other HD families. My daughter participated in the study last year. I was so encouraged by the three brave women who spoke of there certainty of being on PBT2 due to having experienced healing mentally and physically -- for the first time in years. I hope that there is some way to move access to this drug to those who are slowly dying.

[www.exposeadam.com]

'Nuff Said.

Will

Thanks Will,

I will share the only hopeful information I had come up with for either Imagine or Reach2hd. If a Lighthouse administrator would like to remove my post, please if it is best or inappropriate remove it at your wishes, and if it is wrong on my part to share I apologize in advance.

In my research for Alzheimer's, and prevention I have incorporated things that may help into my diet, like Tumeric and a B6/B12/Folic Acid combination for prevention of gray matter atrophy coming out of an Oxford Study, even researching and trying out coconut oil. I have found that anything dietary and readily available is generally speaking, going to be under attack because it's sadly not going to be a money-maker for big pharmaceutical companies. Creatine might be an example if it does work and the shoe fits - I don't know?

I reviewed brief mentions on the Lighthouse of participants or study buddy's and out of the utmost respect and greatfulness have never inquired about experiences from the trial. I am too thankful to take myself there and I am not going there now.

I had encountered one anecdotal claim below that I have no way to verify as to whether it is legitimate, and in the recently announced results no improvement has been claimed for chorea from PBT2, and also it was mentioned in conference they did not have enough patients with those problems to make any determination. I don't want to give hope where there is none as was Jeff Carrol's concern, and neither do I feel it's right or correct to deny hope where a glimmer may exist. For me, with the IMAGINE trial for AD - I watch closely and hope...and I hang onto those glimmers of hope. I ethically and hopefully invested in Prana Biotechnology because for a layman, it just seems like there are independent research studies and findings that keep coming forward in support of their metals theory and their approach to treating these diseases.

I also felt Dr. Jodey Corey Bloom in her 2012 Research Update youtube felt that her largest trial participant group for REACH2HD was at least enjoying the trial and I believe perhaps some lighthouse members participated.

This is the single positive testimonial I had run across and I was unable to validate it's legitimacy...

There is nothing good to say about any brain disease. In my own mind I did particularly well on the 2HD trial. Before, during and after results were not allowed for us volunteers. But I am very hopeful about the results the HD researchers have mentioned. Shown effective in a previous trial, this trial tested different dosages. Higher, lower and placebo.

Informal reviews with my HD clinic said "many" of the group showed improved brain and body functions. Most research though is towards the larger AD disease. Lots of research dollars will generate results. Of that I am positive. They may or may not be able to reverse symptoms but you just don't know. Keep the faith. In fact that is the key issue in my view.

My symptoms come and go. Usually under stress or anger (bad) they worsen. Before the HD trial I was using a cane and shopping carts to get around. My Chorea has always been a bit rangey. Need the whole sidewalk as I move around. One month later, on the drug plus a couple other regimens, I didn't need a cane....I had shared this on the YMB board for Pran previously, but never on the lighthouse, and if an administrator wishes to remove it as being best I am ok with it, and mean only good by sharing it.


On the YMB board for Pran, the poster who's post I shared earlier has put up one other response....

Reply to "3 brave women" by pvretire •25 minutes ago
.

atpahiker • 15 minutes ago

The 3 women I am referring to were all included in the trial (i.e. part of the 109 people). All 3 spoke of the fact that they "knew" they were on the drug and not the placebo due to the positive sympon relief they experienced. I can tell you I heard this quite clearly given the fact that my daughter has HD (from my deceased wife) and took part in the trial and I was taking notes.


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Father of HD Daughter

by atpahiker • Feb 18, 2014 8:57 PM
.

I was on the conference call tonight with many other HD families. My daughter participated in the study last year. I was so encouraged by the three brave women who spoke of there certainty of being on PBT2 due to having experienced healing mentally and physically -- for the first time in years. I hope that there is some way to move access to this drug to those who are slowly dying. Less


Regarding the IMAGINE trial for Alzheimer's there is a youtube testimonial that Prana Biotechnology had to respond to in a press release in November after their extension trial to Imagine had already begun dosing, that they had no part in it, but acknowledged the person was indeed an IMAGINE participant. It was included in a patchwork news piece in Australia, that almost seemed to be purposed for trial recruiting of some of their other trials or the Solazinumab trial, in particular - yet the testimonial part came from an IMAGINE Trial participant on PBT2.

[www.youtube.com]

Prana's response to the media segment:

[finance.yahoo.com]


Over my three years following Prana Biotechnology, these were the only positive things I was able to come across. If it's wrong for me to share this I ask a Lighthouse Administrator to kindly remove my post as soon as possible. I hope and pray something comes along soon, whether or not it is PBT2, or anything else - just Help in some form to modify, delay, or fight HD and AD In a beneficial way. That's all I hope for.

Just to be clear, I was only commenting on the credibility of one Adam Feuerstein, a writer, and no one else.

Will

k, I am no scientist and do not profess to be. I also really think Jeff Carroll has written some wonderful articles on PBT2, and perhaps it was my own interests that upset me and made me feel it was very biased. I can accept being wrong if I am looking through a different pair of glasses.

frobinso, the Lighthouse administrators (sidelined first by flu and then by a malfunctioning laptop which I have now replaced) are most certainly NOT going to delete your posts. I think they are well written. As far as PBT2 is concerned,we just won't know until the Phase III trial is done. I don't think that the cognitive results mean anything since the more tests given, the more likely it is to get one good result by chance. I think the science behind the test is sound for this therapy to be disease modifying (slowing progression) but I actually don't see any reason to expect cognitive improvement. There is nothing wrong with looking for early indicators of effectiveness in a Phase II trial, a pharmaceutical company is naturally going to want to do that as they make financial decisions about whether to proceed with the next trial, we just can't conclude anything from the results. At at this point we are looking for safety and tolerability and so far so good. I will continue to keep my fingers crossed.