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hope1

HPPD Non Profit Status Update

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I’ve been instructed to recruit a grant writer able to apply for federal funding for HPPD research. Turing to all of you for help as I don’t know how to go about finding anyone to do pro bono work. 
I ask as we don’t have any money to pay someone. This comes from the fact that despite having a research protocol in place to investigate HPPD, hardly anyone has donated. 
 

Before Visual Snow was helped by a wealthy benefactor whose daughter has the condition through the Visual Snow Consortium, there was the Eye In Vision Foundation which successfully raised tens of thousands of dollars for research. We have a full time PhD who researchers neurovisual disorders willing to help us at McQuarie University in Australia. This team is the only team of credible researchers the Neurosensory Research Foundation has ever managed to find willing to help us out of thousands of inquiries over the span of 5+ years.

Adding a grant writer to the team would help tremendously and expedite the research Dr. McConnell has planned. Until such time as a grant writer is found, much like the Eye On Vision Donors, it’s all in US to kick start research into HPPD. If you want this to happen, donate, volunteer, do anything you can to help. 

The suspicion is a that there is a genetic basis to HPPD. Given the massive work being done with genetics, there’s a chance relief could be at hand but it’s never going to happen unless we make it happen.


 

 

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What are the required qualifications of a grant writer? I'm not sure what one is. I doubt I have any more connections than you have, but I could message some qualified people to see if they'd help if you can tell me what type of person I'm looking for.

That's also excellent news that he might do a follow-up piece, what a nice guy.

Do you still want me to PM you?

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I know that Grant writing is it’s own specialty.

Have no idea what’s involved but feel free to work within your network and find help. As an organization, we need all the help we can get.

 

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Meet Wei!

Wei is one of the researchers working on Dr. McConnell’s team who wants to pinpoint exactly where the damage has been done to the HPPD brain.

How is her progress going?

Not well, in fact not at all due to COVID and that fact that she’s just returning to work from maternity leave but even after she returns, no research will begin as there’s no money to pay her to do any work. This is why I implore the tens of thousands of HPPDers on this site to donate. Let family and friends know that there is a dedicated team with the best credentials working in one of the most prestigious universities around the world. The NRF is real and as a patient I want to go back to a pre HPPD state ASAP. Funding her work will take us there.

 

www.neurogroup.org

CV.WEIHE_SHORT_2018_12_16.pdf

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8 hours ago, Swartz said:

What are the required qualifications of a grant writer? I'm not sure what one is. I doubt I have any more connections than you have, but I could message some qualified people to see if they'd help if you can tell me what type of person I'm looking for.

That's also excellent news that he might do a follow-up piece, what a nice guy.

Do you still want me to PM you?

I know that Grant writing is it’s own specialty.

Have no idea what’s involved.

The author of the article is a great guy and did a hellava job.

 

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19 hours ago, hope1 said:

Meet Wei!

Wei is one of the researchers working on Dr. McConnell’s team who wants to pinpoint exactly where the damage has been done to the HPPD brain.

How is her progress going?

Not well, in fact not at all due to COVID and that fact that she’s just returning to work from maternity leave but even after she returns, no research will begin as there’s no money to pay her to do any work. This is why I implore the tens of thousands of HPPDers on this site to donate. Let family and friends know that there is a dedicated team with the best credentials working in one of the most prestigious universities around the world. The NRF is real and as a patient I want to go back to a pre HPPD state ASAP. Funding her work will take us there.

 

www.neurogroup.org

CV.WEIHE_SHORT_2018_12_16.pdf 261.58 kB · 0 downloads

Hope1, check r/HPPD, this topic: https://www.reddit.com/r/HPPD/comments/gzk7qe/my_article_for_the_independent_on_hppd_is_here/

 

A user, brokensoul39 was asking about if you're active on that subreddit. Maybe he's interested in helping. Let's face it: r/HPPD is FAR more active than this forum, it's definitely worth registering there and talking about it if you haven't already.

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I was kicked off that sub reddit by one of the admins Penguin something or other. Accused is spamming.

 

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2 hours ago, hope1 said:

I was kicked off that sub reddit by one of the admins Penguin something or other. Accused is spamming.

 

I'm not surprised unfortunately. They deleted a post I made asking some simple questions about their theories. Likely the same asshole moderator too. Too bad cyber-slapping people isn't possible...

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We received $50,000 from the “HPPD Foundation” which covers half of the primary researcher’s salary. We can’t move forward without the other half.

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23 minutes ago, hope1 said:

We received $50,000 from the “HPPD Foundation” which covers half of the primary researcher’s salary. We can’t move forward without the other half.

I tried contacting David Kozin here through PM (he's the site owner) and he didn't respond, but I know he's very active on Twitter. I've met him personally and known him a long time, he might be willing to figure out who could help. I'd create a Twitter account but I hate Twitter and would prefer not to go back there if I don't have to.

His username on there is @davidkozin

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