hope1

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hope1 last won the day on October 3 2015

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About hope1

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  1. I can always use a hand. info@neurogroup.org
  2. 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
  3. 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.
  4. 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
  5. 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.
  6. PM me on FB with the handle Dr. FutureMed
  7. I'm in need of 4 board members for the foundation who must meet 3x by the end of 2016 by virtual meeting and one 1x per year thereafter. The work load is beyond minimal unless you want to take a participatory lead. Please contact me if interested at info@neurogroup.org.
  8. I'm in the process of starting an HPPD non profit and need four board members. Interested parties can reach me at info@neurogroup.org. The work required in minimal at best. Need to meet at least 1x per year on skype or other virtual meeting modality. Need to meet at least 3 times for the remainder of 2016. The sooner this is done, the sooner I can file for non profit status.
  9. 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
  10. The lead researcher agreed to be on the Scientific Advisory Board to the NNRF but after that initial email I havent heard from her since. I think this technology and others similar should help like the work being done by Dr. Gong Chen of U Penn.
  11. database

    Oh you already included it...
  12. database

    Maybe the neuroimaging test to take is a Magnetic Resonance Spectometry (MRS). Sometimes (unfortunately) we have to hold our doctors' hands...
  13. You know what really sucks about living with HPPD? LIving with HPPD... And yes, poisoned is the best way to put it. It would appear many of us have our sense of reason and morality intact but have malfunctioning minds as a results of drug use which inhibits us to lead full, happy and productiive lives. I'm working as hard as I can to change things along with a few others. Could really use more hands on board.
  14. That medication does look interesting.
  15. As far as a cure is concerned, there is lots of headway being done in gene edititing and the regenerative medicine space but sadly NOBODY is applying any of this tech to our shared problem. My position on this is becuase people with HPPD in the past have concentrated on doing the science but didn't do much in the way of advocacy. There are already scientist who have done and still do research with limited funding so why public awareness campaigns were not part of the plan is a complete and utter mystery to me. It's like having two spheres of a working brain but only working with one.