hope1

Members
  • Content count

    620
  • Joined

  • Last visited

  • Days Won

    73

hope1 last won the day on November 2

hope1 had the most liked content!

Community Reputation

426 Honored Member

About hope1

  • Rank
    Senior Member
  1. 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...
  2. 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
  3. 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.
  4. There are plenty of neurology seminars where you pay to participate and promote your organization, foundation, etc.
  5. 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.
  6. 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.
  7. 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.
  8. 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...
  9. 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.
  10. I can always use a hand. info@neurogroup.org
  11. 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
  12. 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.
  13. 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
  14. 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.
  15. PM me on FB with the handle Dr. FutureMed