Perception Restoration Foundation Announcement

[Perception Foundation]

Hi All,

It’s with great enthusiasm that we announce the launch of the Perception Restoration Foundation (PRF), a non-profit committed to organize, support, and fund scientific research into HPPD and work towards a cure.

The HPPD community has shown tremendous resilience over the past few decades. In online communities and patient-founded nonprofits, we’ve helped each other navigate the difficulties of living with these symptoms. And at the PRF, it’s our ambition to act as a representative, engaged and self-reflective voice for the HPPD community, which has been undercovered and marginalised in most discussions around psychedelics and other triggering drugs.

We’ve put together an amazing team of researchers, clinicians, investors, and corporations who have a genuine interest in increasing the awareness of HPPD, and researching how we could one day cure the condition.

We have three projects that we’re ready to announce, and several others that will be announced at a later time. To make sure you don’t miss any updates -- sign up for our mailing list:

• Macquarie University in Australia: This will be the deepest neuroimaging to date on HPPD patients’ brains, using EEG, MEG and fMRI scans. It’s hoped that the scans will surface a mechanism at the neurophysiological level which may pave the way for new and more effective treatments. Due to COVID restrictions, only Australian residents are eligible to be scanned, but there is an online survey into HPPD that everyone is encouraged to fill out.

  • In the future, we may open participation in other locations so be sure to fill out the survey even if you’re not in Australia.

See this post for more information on the study and instructions for participating: 

• The University of Melbourne: Researchers are developing a psychophysics tool - a way of representing visual experience on screens - that will test if subjects may have HPPD or be at risk for developing it. Early evidence suggests that developing HPPD-style changes may be more likely if people have past experience of visual disturbances, so the tool may also help prevent people at risk for developing HPPD from dosing.

• A documentary: The PRF is helping to put together a documentary to raise awareness and attention for the disorder. We’ve spoken to more than 100 HPPD sufferers from around the world as part of this project. You can see the trailer here.

  • This will be matched by awareness-raising activity across the board. One of our team is the journalist and writer, Ed Prideaux, who’s invested in the psychedelic community while having lived with HPPD-style perceptual changes since he was a teenager. Ed appeared on the Adventures Through The Mind podcast hosted by James W Jesso - an influential psychedelic media personality - and will appear on a number of other channels in the next month, including Third Wave, Psychedelics Today and Psychedelic Spotlight.

Thanks all. Please contact us to say hello, ask any questions, share concerns, and, if applicable, to apply for participation in the Macquarie study.(As above, it’d really help us if you signed up to our email newsletter, too!)

Thanks -

The PRF team

Edited November 11, 2021 by Perception Foundation
updated link to study

[NRFAdmin]

…

Edited December 2, 2021 by NRFAdmin

[Lucas]

How is it possible there is such "drama" around foundation for bringing help to HPPD ?  

[NRFAdmin]

On 11/23/2021 at 7:53 PM, Lucas said:

How is it possible there is such "drama" around foundation for bringing help to HPPD ? 

Edited December 2, 2021 by NRFAdmin

[Jay1]

I don't really get what's going on here and don't have time to get involved... but please don't post personal websites/emails etc, as we got a complaint about doxxing.

[NRFAdmin]

You know full well that the NRF was behind the MaQuarie Protocol. The PRF had no part in it. 

[Hall89]

On 3/8/2022 at 12:56 AM, NRFAdmin said:

You know full well that the NRF was behind the MaQuarie Protocol. The PRF had no part in it. 

Isn't it thanks to the PRF that it's actually happening?

[NRFAdmin]

No

[David S. Kozin]

Jay1 - I will work with this. 

I have 22 years spent collecting names and phone numbers of people who do not sign up to HPPDonline.com, but they visit the message board and never sign up. The people who sign up, and to anyone I am going to talk to I have to do what I need in order to maintain truth with individuals. I am going to address this as minimally as I can, and hope that it can be resolved on its own. Just to be clear, I have not worked with the NRF for a few weeks but the things I am going to mention to everyone is stuff that I picked up off the Internet. 

I sent a PM to PRF to get feedback about issues that often plague nonprofits.

 

[Spartan]

I 

 

Edited March 31, 2022 by Spartan

[Hall89]

I got this screenshot from a guy on Reddit that had talked to you on Twitter, and who is this fool in your organization? He or she doesn't want to spread awareness about HPPD through a big platform and believes that people will get HPPD from doing it. Literally, wtf? 

 

Quote

 

Edited April 28, 2022 by Hall89

[James91]

I saw the same post too, wtf!!!, bringing to light a horrible condition is not going to cause some mass freakout, so sad

[Spartan]

ridiculous totally disagree

[Sambabeat78]

Hello all - I'm the person who wrote the response. What I said was lost in translation, partly because the original person with whom I was communicating left out substantial excerpts of my messages. I will reproduce below what I have also posted on Reddit in response:

I'm the person who said this. The post does not really provide the context for what I said, which is misinterpretable. The Macquarie study is not dead; we are attempting to raise funds. I'm sorry people felt gaslit, which is not what I intended. I do sincerely believe, though, that a blanket (edit: mass media/JRE) 'raising awareness' may have a downside, although it's ultimately a contested point how the upsides and downsides balance. (edit: see below to read that my fundamental concern is ensuring subtlety in any media presentation on HPPD; the media is rife with oversimplified and sensationalist accounts, and my concern to this person was that an appearance on a channel as large as Rogan's not executed right could backfire).

Here's the rest of what I said, which is left out this person's account:
 

'I'm more optimistic than you about the funding. Psychedelic medicine cannot ignore HPPD, and it increasingly isn't.'
 

[Why would going on JRE give people HPPD?] [admittedly a crude way to express this, and I apologise]
 

"'Because HPPD is characterised by distress + visual changes. Lots of people have visual changes that don't bother them. So, going on a big platform like JRE and 'sounding the alarm' risks making people view their visual changes as a problem when they don't need to be. I think better work is to be done working behind the scenes and being subtle. Going on JRE will raise awareness, and possibly create more of a groundswell towards motivating research into the condition, but I'm not sure. What this condition needs is careful research.Also, the development of lasting visual changes is, I believe, strongly related to fixation and suggestion. If people have it in their heads that these changes are possible and are freaked out, they will be more likely to manifest them in the acute period of suggestibility after a trip, when certain lingering visuals are actually normal.
 

"'Just had another thought. I think my bigger concern is that a mass media platform gives a very simplistic and sensationalist narrative about HPPD; something that maybe going on a platform like JRE or Lex Fridman is designed to avoid (maybe).
 

'Going on FOX News or something would probably fit that risk more!'"

 

I hope this clarifies things for people concerned, and I take ownership and am sorry for any offence caused. 

Edited May 1, 2022 by Sambabeat78

[Hall89]

For those that doesn't know, the study is on ice because of lack of funding (big surprise there) and the lead researcher Wei He has jumped ship.

[Akshay]

Vss has funding bro, they actually found a area of the brain which is effected in vss, but still they are not able to figure out which it's malfunctioning there, check out visual snow iniciative . I truely belive if they find an cure for vss it can be used to people with hppd

[Hall89]

On 7/20/2022 at 10:58 AM, Akshay said:

Vss has funding bro, they actually found a area of the brain which is effected in vss, but still they are not able to figure out which it's malfunctioning there, check out visual snow iniciative . I truely belive if they find an cure for vss it can be used to people with hppd

Yeah i follow the VSI and have read the research, and yes, maybe they share some pathophysiological mechanisms, i hope so, but i'm sceptical. And i don't want to be negative, but don't hold your breath for a "cure", there's no money in that, our hope is a treatment. 

[Spartan]

0

 

Edited September 20, 2023 by Spartan

[Siren001]

What’s this organization doing to help? Haven’t seen anything lately coming out from them.

[Hall89]

1 hour ago, Siren001 said:

What’s this organization doing to help? Haven’t seen anything lately coming out from them.

Doesn't seem to do much, if anything. I quess that they've, like most of us, have realized that getting some real research done on HPPD, like VSS, just ain't going to happen. Only some surveys here and there, but no more comple  neuroimaging studies. There is the protocol at Mcquarie University, but McConnell is asking for $800 000 dollars for it, which is absurd, so pure greed from his part, that's never going to happen.

[Siren001]

Why isn’t this website being used to fund the research? If that’s all we have and that’s what McConnell wants, do we really have a choice?!

Edited October 3, 2023 by Siren001