Guest Posted September 22, 2019 Report Share Posted September 22, 2019 What if I had a research protocol in hand that specifically mentions how HPPD could be reversible but wasn’t able to circulate it, fundraise for it without permission from the physician scientists who drafted it? You can’t imagine how hopeful and at the same time how powerless I feel.... Link to comment Share on other sites More sharing options...
olivier24445 Posted September 23, 2019 Report Share Posted September 23, 2019 Why wouldn't you be able to get permission ? Link to comment Share on other sites More sharing options...
Jay1 Posted September 23, 2019 Report Share Posted September 23, 2019 I'd like to hear more details here... you have it but can't disclose because of NDA? You don't have it and want to use the fund raiser money to somehow gain access? Link to comment Share on other sites More sharing options...
Guest Posted September 23, 2019 Report Share Posted September 23, 2019 I have it for some time and I’ve read once, months ago but wasn’t as thorough in going about it until last night. As you may or may not be aware, I started a non profit for HPPD years ago. In that time, I’ve had no success in recruiting a physician scientist to help us. That changed when a patient and member of this forum went to see a psychiatrist, told him about HPPD, the foundation and literally asked him for help, to get involved. The research physician is Dr. Harry McConnell. He and his PhD associates drafted the protocol. What was missing was money so I got in touch with Dr. Abraham who connected me with the man (Chris) behind the HPPD foundation who has pledged $100,000 per year toward HPPD research and together Harry, Henry and Chris produced the 5th and final rendering of the protocol. With the seed money from Chris, Harry was able to approach a research institution (Macquarie University) to back the study and match the initial seed money to fund the project and pay a qualified researcher to run and interpret tests ranging from genetics, immunology, neuroimaging and more. The caveat is that I was told not to crowdfund or release the study to anybody until Harry had, in writing, that Macquarie formally accepted the protocol. Of course there’s more to the story but I need to get to work. The point is that I’m just desperate to see something happen, just want to get better, for us all to regain some semblance of normalcy and undo the damage HPPD had done to us all in the worst way. I guess I was having a cathartic moment as I’m so tired waiting but I suppose I have no choice... Link to comment Share on other sites More sharing options...
Guest Posted September 23, 2019 Report Share Posted September 23, 2019 If anyone is interested in helping, I could use a hand in registering the non profit in the states that require it which I believe are 37. Can’t fundraise in all 50 when the time comes without being compliant with state mandates. Link to comment Share on other sites More sharing options...
Tsunami Posted September 24, 2019 Report Share Posted September 24, 2019 Just to clarify, the protocol is fully developed? If so, that’s amazing. I’m a bit skeptic though since each drug causes different types of HPPD. I got mine from nBOME, and it seems like the effects and severity are different from HPPD from other drugs. It makes me wonder whether or not this research protocol will help me, although any research on finding a cure or better treatment is always welcomed. Do you have a timeframe for how long it may take for the research protocol to be released/worked on? I’d be willing to do anything I could to help, although there isn’t much I can do immediately besides raise awareness since I’m a freshman in college. Link to comment Share on other sites More sharing options...
Jay1 Posted September 24, 2019 Report Share Posted September 24, 2019 They seem to have legitimate reasons to wait for it to go public, so I think you need to respect them. Though that does not mean you cannot try it yourself, right? If it works for you, then that would be a great indicator and, although it would be hard to wait for a public announcement, that's the way it goes. 1 Link to comment Share on other sites More sharing options...
yosoydiego Posted September 25, 2019 Report Share Posted September 25, 2019 I don't have hppd, but I'd still be extremely interested in knowing anything about this! I've been investigating it, and I clearly think there is A LOT to be said about hppd, even just from a lot of reading 1 Link to comment Share on other sites More sharing options...
Fawkinchit Posted September 25, 2019 Report Share Posted September 25, 2019 (edited) Wait I'm confused.... so they have reversed it? Or no? Also congrats on the success! I remember talking to you about all this a couple years ago. Edited September 25, 2019 by dasitmane Link to comment Share on other sites More sharing options...
Spartan Posted November 3, 2019 Report Share Posted November 3, 2019 (edited) yes, very exciting news! The protocol is fully developed and is seriously amazing/mind-blowing. I was asked to participate in some tests By Professor Mcconnell as the protocol was being put together which included a sleep-deprived QEEg (which was hell) As far as I am aware, the protocol has been put together as a collaboration of all the top authorities on HPPD from around the world. For something as big as this, its the nature of it that big things do take time. I speak with professor McConnell frequently and he has assured me that everything is on track and moving forward. In any case, I wish everyone could view this protocol. Definitely there are legit reasons why things can take some time, although it WILL happen. Yes, we need to respect the wishes /protocols of the researchers and not break rapport in any way. Edited November 3, 2019 by Spartan Link to comment Share on other sites More sharing options...
LimeGreenKoolAid Posted November 5, 2019 Report Share Posted November 5, 2019 Wait, are you guys saying there is a protocol to treat HPPD on the horizon? One that you have actually participated in and have seen? Please tell me this is true... Link to comment Share on other sites More sharing options...
josht9210 Posted November 5, 2019 Report Share Posted November 5, 2019 Does this apy yo visual snow as well? I have hppd but I mean the pathology is so similar. Link to comment Share on other sites More sharing options...
Guest Posted November 14, 2019 Report Share Posted November 14, 2019 No. The research study is specific in trying to determine the underlying problem behind the disorder which the researcher believes might be reversible. There is no cure currently on the table but the research could lead to one. Could be soon, might be never; we’ll never know unless the work he’s doing is supported. Link to comment Share on other sites More sharing options...
Fawkinchit Posted November 27, 2019 Report Share Posted November 27, 2019 On 11/14/2019 at 5:01 AM, hope1 said: No. The research study is specific in trying to determine the underlying problem behind the disorder which the researcher believes might be reversible. There is no cure currently on the table but the research could lead to one. Could be soon, might be never; we’ll never know unless the work he’s doing is supported. Awesome, thanks for the response. You never called me back.... Link to comment Share on other sites More sharing options...
Guest Posted December 8, 2019 Report Share Posted December 8, 2019 Thought you were calling me back. By the way I tried. Link to comment Share on other sites More sharing options...
Fawkinchit Posted December 10, 2019 Report Share Posted December 10, 2019 Ill hit you up. Link to comment Share on other sites More sharing options...
NRFAdmin Posted June 14, 2021 Report Share Posted June 14, 2021 The HPPD research protocol has been approved. The NRF is accepting donations, 100% of which will go to fund it. https://researchers.mq.edu.au/en/projects/hallucinogen-persisting-perception-disorder-hppd-protocol-multimo Considering federal funds are non existent to pay for the research, it is up to us, family, friends and other loved ones to support it. Please donate here: https://www.neurogroup.org/donate/ Click this link to sign up if you would like to become a participant: https://www.neurogroup.org/the-foundation/register-with-the-nnrf/ It finally happened... 1 Link to comment Share on other sites More sharing options...
Fawkinchit Posted June 15, 2021 Report Share Posted June 15, 2021 (edited) On 9/22/2019 at 12:01 PM, Guest said: What if I had a research protocol in hand that specifically mentions how HPPD could be reversible but wasn’t able to circulate it, fundraise for it without permission from the physician scientists who drafted it? You can’t imagine how hopeful and at the same time how powerless I feel.... That awesome bro! Edit: Just realized this is a thread bump lol Edited June 15, 2021 by Fawkinchit Link to comment Share on other sites More sharing options...
Sharlot Posted June 8, 2023 Report Share Posted June 8, 2023 On 14.06.2021 at 16:23, NRFAdmin said: Протокол исследования HPPD утвержден. NRF принимает пожертвования, 100% из которых пойдут на его финансирование. https://researchers.mq.edu.au/en/projects/hallucinogen-persisting-perception-disorder-hppd-protocol-multimo Учитывая, что федеральных средств для оплаты исследования не существует, мы, семья, друзья и другие близкие должны поддержать его. Пожалуйста, сделайте пожертвование здесь: https://www.neurogroup.org/donate/ Нажмите на эту ссылку, чтобы зарегистрироваться, если вы хотите стать участником: https://www.neurogroup.org/the-foundation/register-with-the-nnrf/ Это, наконец, произошло... Do you have a protocol? Link to comment Share on other sites More sharing options...
brake Posted June 9, 2023 Report Share Posted June 9, 2023 On 6/14/2021 at 7:23 AM, NRFAdmin said: The HPPD research protocol has been approved. The NRF is accepting donations, 100% of which will go to fund it. https://researchers.mq.edu.au/en/projects/hallucinogen-persisting-perception-disorder-hppd-protocol-multimo Considering federal funds are non existent to pay for the research, it is up to us, family, friends and other loved ones to support it. Please donate here: https://www.neurogroup.org/donate/ Click this link to sign up if you would like to become a participant: https://www.neurogroup.org/the-foundation/register-with-the-nnrf/ It finally happened... Link to comment Share on other sites More sharing options...
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