HPPD Research Propsal

[Guest]

Some if not most of you may know I started a non profit for HPPD and VS with the help of several people with HPPD. After many years of hard work we have a neuropsychiatrist, Dr. Harry McConnell, on board who has taken up the mantle from Dr. Abraham and has designed the only fully comprehensive research study on HPPD. It will cover genetics, autoimmunity and utilize several means of neuroimaging. I’m encouraging all of you to get your family, friends even yourselves to donate toward this study because if something remarkable is found, it will change everything for us as a patient community.

http://www.neurogroup.org/donate/

 

[droppedonce]

As soon as I ad more funds to my checkings account, I will donate! Thank you.

[HPPD-WONT-STOP-ME]

@hope1

Splendid, just donated!  Do you have any updates on fundraising progress and when the study will start?  Also, how does one volunteer to be a study participant?

Thanks!

[Guest]

We’ve only raised $175 to date.

As far as the study goes it’s been drafted and sent to an ethics review panel for approval. It’s both elegant and amazing. I’ve also connected our lead researcher, Dr. Harry McConnell with two major funders but I’m standing by on a reply from Harry for an update. I suppose it’s just a waiting game now. 

[K.B.Fante]

Is there a certain amount of money that must be obtained before the study gets the green light? If so you might wanna set up a GoFundMe page. 

[Guest]

Well there are a few issues that your question addresses which I will try to answer. When it comes to any disease that has not been firmly established and quantified, when the majority of reports are anecdotal which describe patient related events in the clinic  and not actual clinical research, It becomes difficult for a research to justify federal funding for a disease state that may seem at best hypothetical. When doctors routinely misdiagnose HPPD, our position is further undermined in proving our plight to the scientific community. What’s worse is that there is a cabal of researchers who have access to some of the very best facilities in the world and brilliant talented individuals researching psychedelics as medicine who absolutely refuse to engage HPPD for fear that if word got out about our condition it would sabotage their work and the patients they believe they can help.

 

In short there is no federal funding for HPPD, medical practitioner’s outright ignorance fails to quantify HPPD cases and our could be would be should be allies voraciously actively studying psychedelics for medicine are doing everything they can to sweep us under the rug justifying their position in safeguarding their work by saying our suffering doesn’t matter as compared to others conditions psychedelics could treat .

We are alone....

 

I’ve managed to get Dr. McConnell and Dr. Abraham to talk and in so doing connected the elusive “HPPD Foundation” donor to Dr. McConnell. For simplicity sake let’s call him Chris as that’s his first name. Let me add I don’t know how last name as he wants to keep his identity a secret. He’s an associate of Dr Abraham and that’s all I know aside from him having donated in the past to HPPD research that didn’t go as planned. Moderators on the board may know much more about it. 

Anyway, he’s pledged $100k annually towards research and while that’s better than nothing, in terms of research into a disease, it’s not much at all which is why I sought the help of a very wealthy individual who has a daughter afflicted with visual snow and got him, Chris and Dr.McConnell in a conference call this past week. The idea in the incorporation has f visual snow into the mix is due to the stark similarities between both conditions hoping progress or a cure in one could lead to another.

The outcome was favorable but the response from Dr. McConnell lacked specifics or general direction although I’m confident in speculating he has a plan. The conundrum I’m  facing is that I have a final draft of a research proposal that’s sitting in my desktop that I want to fundraise but I can’t for two reasons:

1. It’s pending an ethics board review approval. I don’t know how long that process takes but it’s been over a fucking year. I can’t describe the level of frustration and hopelessness I deal with knowing there’s a plan in place but no way to execute it until I get the green light.

2. The regulatory bureaucracy for Soliciting donations is as hard if not harder than attaining a 501c3. As it stands there are a handful of states that do not require state level registration at a cost to annually be recognized as a non profit and allowed to solicit donations. As I don’t have a research plan to fundraise I haven’t dedicated the time to register in every stare (USA) but even if I did have a plan I barely have enough money to keep the foundation alive and in compliance with the IRS. This is why I haven’t started a go fund me for anything yet.

This is the general backstory without taking account the amount of time, effort, resources and other HPPDers who have helped along the way and who sadly are all gone save one who have contributed to helping me get as far as I have which include the recruitment of Dr. McConnell.

Understand this; ive reaches out to thousands of researchers and of the lot only a handful have expressed interest in helping us and of the all just Dr.McConnell who I believe is literally accepting the torch being passed to him from Dr. Abraham. This is what I’ve managed to accomplish since 2012 because I saw little to no effort being made by anybody to take this website as a site of support to an advocacy patient centric arm of our collective plight. Now imagine if we were organized...

 

anywY to answer your question I really don’t know what number would work but if  every HPPDer donated, had family and friends chip in, I’d like to think Dr. NcConnell would be highly motivated to get the ballrolling and if he were to find anything remarkable about this disease, it could lead to federal funding and maybe one day targeted treatment or a cure designed to restore us as we were.

 

sorry for the delay in responding to you. Doing everything I can to hold a job and not end up on the street or worse.

Hope1

Edited April 13, 2019 by Guest

[Guest]

Appeared in my inbox this morning.

“The conversation was productive

I think there is a way forward with collaboration here

It is frustrating that things take so long

I am hoping we can get an agreement from XXXX and or XXXX to fund a full time researcher to work on this

I have identified an ideal candidate who is highly qualified and keen

Waiting to hear their response 

Thanks”