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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

hope1

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Everything posted by hope1

  1. 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
  2. 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.
  3. 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/
  4. 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.
  5. hope1

    HPPD MAP

    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/
  6. 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?
  7. hope1

    AGGRESIVE ADVOCACY

    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
  8. 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
  9. hope1

    Getting worse!

    Drugs...
  10. 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...
  11. 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
  12. hope1

    MAP OF HPPD

    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.
  13. 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.
  14. hope1

    Conferences or Seminars

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

    MAP OF HPPD

    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.
  16. 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.
  17. hope1

    AGGRESIVE ADVOCACY

    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...
  18. 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.
  19. hope1

    HPPD Non Profit Status Update

    I can always use a hand. info@neurogroup.org
  20. hope1

    HPPD MAP

    I would like to encourage all of you to please create an account and join the HPPD disease map at https://www.diseasemaps.org/hallucinogen-persistent-perception-disorder/map/ This is an unofficial attempt at creating a census of people who have this disorder which could potentially lead to patient recruitment for basic research studies. Please take a few minutes and join the map. Thank you. www.neurogroup.org
  21. I"m in need of 4 individuals willing to make up the Executive Board of the Neurosensory Neuroregenerative Research Foundation, a budding non-profit designed to create awareness, fundraise and institute research for Visual Snow and HPPD. In order for me to file for non profit status I need to conduct at least three virtual meetings (Skype, Google Hangout, etc) no later than the end of the year. The sooner the better. In any case, those of you interested in getting involved can send me an email at info@neurogroup.org or PM here. The assistance I am requesting is marginal at this point but anyone willing to donate time and resources is welcomed. Thanks
  22. hope1

    Executive Board Memebers

    Our board was finally formed and satisfied the requirements to have an attorney help us file for non profit status on a pro bono basis through the help of an organization that assists budding non profits. Its been a very long and hard journey but my team and I are dedicated to carry on the fight and help find a cure for HPPD.
  23. Hi everyone, After several years of putting together an HPPD non profit, it looks like it's going to happen. Took me several years but I finally found an attorny who will be filing the necessary forms to help us attain 501c3 status with the intent on finding a cure for HPPD and quite possibly Visual Snow as the two seem very interrelated. I should have some more news in the first quarter of 2017 barring any hangups. If anyone would like to get involved, we can certainly use your help. This is afterall a patient powered organization. I can be reached at info@neurogroup.org Best
  24. hope1

    HPPD Non Profit Status Update

    After nearly a year, I've finally managed to get pro bono work provided by an attorney who will file the necessary forms to help us acquire 501c3 status. This is truly remarkable news thanks to a team of dedicated HPPDers who are taking control over their condition in the pursuit of finding a cure.
  25. hope1

    Executive Board Memebers

    PM me on FB with the handle Dr. FutureMed
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