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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum


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Everything posted by hope1

  1. hope1


    Any update? Can you describe how you got HPPD and what your symptoms are? thanks
  2. hope1

    HPPD Non Profit Status Update

    Don’t know how to improve SEO. If anyone can help please let me know.
  3. I have been putting the time and effort in the development of the website, changing the layout a bit, adding content. Could really use some feedback and advice. I'm not scientifically inclined about this condition but reading up as much as I can and trying to articulate it in a manner that would educate the layperson as well as generate interest from the scientific community. The goal right now is to optimize the website and then send a pitch letter of invitation to put that board together. I really could use a hand. www.neurogroup.org
  4. hope1

    HPPD Non Profit Status Update

    Doing what I can to help this community
  5. The first multinational HPPD study is currently under IRB review. In a few months,the first steps will be taken to truly work on decoding and deconstructing HPPD.Will provide updates regarding the study as they come. surprising how many research physicians want to help!# CureHPPD www.neurogroup.org
  6. hope1

    HPPD Petition

    Please sign & share: https://secure.avaaz.org/en/community_petitions/World_Health_Organization_Health_research_and_funding/?cbDCpnb&utm_source=sharetools&utm_medium=copy&utm_campaign=petition-552055-World_Health_Organization_Health_research_and_funding&utm_term=bDCpnb%2Ben
  7. hope1

    worth trying a sleep study?

    What do you mean “Super Powers”?
  8. hope1

    HPPD Non Profit Status Update

    The final revision of the HPPD study is under IRB review. We expect it to be approved within a three month window. When released, I’m asking all of you to please share it on social media, among friends, family and to donate.
  9. Help The NNRF By Donating To HPPD Research! The Neurosensory Neuroregenerative Research Foundation (NNRF) is please to announced that is now officially an non profit 501c3 entity and can receive tax deductible donations to fund research into Hallucinogen Persistent Perception Disorder (HPPD) and Visual Snow (VS), disorders that historically have been grossly understudied and go under diagnosed. Our work is twofold; awarness & research. The NNRF currentlly has a donor who will match your donation dollar for dollar up to $100,000 for HPPD research. Research proposals and recruitment information will be posted in the first quarter of 2018 and will involve utilizing state of the art neuroimaging and genomic testing modalities. The planned sites are multinational with three in the United States, one in the United Kingdom and one in Australia. Such a collaborative effort to study HPPD has never happend which means your contribution will help tremendously in fully elucidating the neurobiological underpinnigs of HPPD which we hope will lead to a cure so if you, someone you love, a family member or friend has HPPD, please help donate and spread the word. This research will save lives and one day prevent psychedelic drug users the horror of EVER having to experience HPPD. Please Donate Today Thank You! *We are still working on developing a research team for Visual Snow so stay tuned for updates and fundraising information. http://www.neurogroup.org/donate/
  10. hope1

    Eeg, brain scan what would be different in HPPD?

    That’s because nothing would show up in those tests. QEEG and perhaps PET scan would.
  11. hope1


    Please sign up for the HPPD map. The more people we can quatify with this disorder, the greater our chances at getting federal funding for research. http://www.neurogroup.org/hppd-map/
  12. At times when I'm at my worst, I start thinking what can I do to get the wheels of research going on my own? I've looked up the rosters or many universities and sent indivduals performing reserach into neuroscience a brief email along with a link to the hppd foundation grant. Maybe this approach can be refined into a professionally written form letter to get the attention we deserve and get more heads involved in this condition? Admins-What do you think?
  13. hope1


    So the the non profit is up and running. As the title suggests "Aggressive Advocacy", I managed to assemble a brilliant team of research scientists willing to investigate HPPD and formed a non profit. It's official, the NNRF is a 501c3. Please donate. www.neurogroup.org
  14. hope1

    HPPD Non Profit Status Update

    The non profit is up and running. Starting a seperate post with clinical tirals and donate information. Took me long enough but I'm a persistent bastard. www.neurogroup.org
  15. hope1

    Getting worse!

  16. hope1

    Getting worse!

    Yeah. It's been 21 fucking years and I do my best to keep on keeping on. I even started a Non Profit for HPPD to raise awareness and fight for research. I'm not giving up on myself and not letting HPPD win...
  17. hope1

    HPPD Documentary

    In part of my continuing work for the Neurosensory Neuroregenerative Research Foundation, a documenatrian has reached out to me from the U.K. who wants to produce a feature film on HPPD and needs people to interview with the disorder. If interested please contact me at info@neurogroup.org. Thanks
  18. hope1


    Hello Everyone. In an attempt to get a rough unofficial census as to how many of us there are, I have created a link on the NNRF website that will take the user to a map that serves as a census for HPPD. As stated it is not official but the map servers a variety of functions. 1. It allows us to communicate with one another. 2. It displays our general locations and that of specialists who deal with HPPD. 3. It performs a census (however unofficial) of how many people suffer from this condition 4. The census might serve as a means to get more researchers interested in HPPD To view the map and please do, you may click here: http://www.neurogroup.org/map/hallucinogen-persisting-perception-disorder-worldwide-map/ The more of us that appear, the greater the odds that we may get some much needed attention paid to this disorder. All the best Hope1 *Admin Please Pin and if possible send a mass email blast to all registered users on this site.
  19. The Neurosensory Neuroregenerative Research Foundation needs resident agents, one per state, to accept mail in the foundations behalf. This is a service that we could pay a third party provider had we any money so I'm asking for volunteers to lend a hand. I can be contacted at info@neurogroup.org.
  20. hope1

    Conferences or Seminars

    There are plenty of neurology seminars where you pay to participate and promote your organization, foundation, etc.
  21. hope1


    To TheMythos: The site went down for a few hours after I posted the message. It's been back up for a while now. Mgrade: You can find me on FB under the handle GhiGho SevenOh. IM me.
  22. hope1

    HPPD Non Profit Status Update

    In becoming a non profit able to solicit donations, most states require forms be filed and resident agent able to accept mail on behalf of the foundation. I'll be putting up a seperate post looking for volunteers interested in being resident agents as this service ordinarilly costs money which we currently have none.
  23. hope1


    So I found my 4, we have an attorney filing our non profit status, new website is up, needs some minor edits but we are making progress. Wish it wasn't taking so long...
  24. hope1

    HPPD Non Profit Status Update

    New website is up. Needs some minor edits that are being worked on. The donation button won't be up until we acquire non profit status. Don't know what to make of the future but we are working hard at having one with HPPD being resolved.
  25. hope1

    HPPD Non Profit Status Update

    I can always use a hand. info@neurogroup.org

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