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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum

hope1

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Everything posted by hope1

  1. I want to make it clear that not everyone misfortune enough to have contracted HPPD has family history of mental illness. In fact mental illness and HPPD could be mutually exclusive of one another. The catch is that the neurological damage sustained by HPPD manifests itself mirroring psychiatric disease(s).
  2. I recently put up a post indicating that May 6th, 2019 was the last day to take the Visual Snow/HPPD survey. This was an error. The survey will be closed a week from today. If you haven’t taken it please do it ASAP! The more data that’s collected, the greater the chances of more research being done on these two terrible conditions. Remember, the survey can only be accessed via desktop computer. NO MOBILE DEVICES! Access the survey here: https://twitter.com/simonsaryazdi/status/1125798943873470464?s=21 #CureHPPD #CureVisualSnow
  3. Today is the last day to participate in the survey so if you haven’t completed it already, get on it. Establishing an indicator of how many of us out there with neurovisual disorders will prompt researchers to help us all. https://universityofsussex.eu.qualtrics.com/jfe/form/SV_blrsONUZAQ19BGZ
  4. Feeling like sharing your feelings with the architect behind this center which excludes HPPD? Here you go: The best part about Twitter is that you can have an anonymous account. Have fun...
  5. Millions are being donated to research psychedelics! Just not for Hallucinogen Persistent Perception Disorder...
  6. I’d appreciate it. Heal up. In the meantime I’ve been researching grant sources galore. Going to compartmentalize Dr. McConnell’s research proposal in a way that doesn’t disclose too much as well as request the salary requirements for his full time researcher who is interested in lending us a hand.
  7. Get a legitimate diagnosis and ask your doctor to get in touch with Dr. McConnell At Griffin University, AU and ask to get involved in any sort of research collaboration.
  8. The long and short of it is, you need to live a clean sober life.
  9. Won’t any of you step up to help?
  10. Hi Everyone, I’m writing this post as I need help. With the lens being aimed more and more at HPPD and Visual Snow, some assist is required from those of you who feel your skill set, talent and expertise can grow the Neurosensory Neuroregenerative Research Foundation, a nonprofit dedicated to unravel the neurological basis and hopefully one day cure HPPD and Visual Snow. What I need are at least 3 individuals able and willing to assume a board member position on the foundation. I’m also going to need someone fully proficient at WordPress to add content and manage the foubdation’s website; www.neurogroup.org. You can reach me at info@neurogroup.org Thanks
  11. The problem is that very few researchers know about HPPD. Help me help us. neurogroup.org
  12. Look up Dr. Gong Chen at U-Penn
  13. Appeared in my inbox this morning. “The conversation was productive I think there is a way forward with collaboration here It is frustrating that things take so long I am hoping we can get an agreement from XXXX and or XXXX to fund a full time researcher to work on this I have identified an ideal candidate who is highly qualified and keen Waiting to hear their response Thanks”
  14. Why would we see more success stories having seen the video?
  15. Well there are a few issues that your question addresses which I will try to answer. When it comes to any disease that has not been firmly established and quantified, when the majority of reports are anecdotal which describe patient related events in the clinic and not actual clinical research, It becomes difficult for a research to justify federal funding for a disease state that may seem at best hypothetical. When doctors routinely misdiagnose HPPD, our position is further undermined in proving our plight to the scientific community. What’s worse is that there is a cabal of researchers who have access to some of the very best facilities in the world and brilliant talented individuals researching psychedelics as medicine who absolutely refuse to engage HPPD for fear that if word got out about our condition it would sabotage their work and the patients they believe they can help. In short there is no federal funding for HPPD, medical practitioner’s outright ignorance fails to quantify HPPD cases and our could be would be should be allies voraciously actively studying psychedelics for medicine are doing everything they can to sweep us under the rug justifying their position in safeguarding their work by saying our suffering doesn’t matter as compared to others conditions psychedelics could treat . We are alone.... I’ve managed to get Dr. McConnell and Dr. Abraham to talk and in so doing connected the elusive “HPPD Foundation” donor to Dr. McConnell. For simplicity sake let’s call him Chris as that’s his first name. Let me add I don’t know how last name as he wants to keep his identity a secret. He’s an associate of Dr Abraham and that’s all I know aside from him having donated in the past to HPPD research that didn’t go as planned. Moderators on the board may know much more about it. Anyway, he’s pledged $100k annually towards research and while that’s better than nothing, in terms of research into a disease, it’s not much at all which is why I sought the help of a very wealthy individual who has a daughter afflicted with visual snow and got him, Chris and Dr.McConnell in a conference call this past week. The idea in the incorporation has f visual snow into the mix is due to the stark similarities between both conditions hoping progress or a cure in one could lead to another. The outcome was favorable but the response from Dr. McConnell lacked specifics or general direction although I’m confident in speculating he has a plan. The conundrum I’m facing is that I have a final draft of a research proposal that’s sitting in my desktop that I want to fundraise but I can’t for two reasons: 1. It’s pending an ethics board review approval. I don’t know how long that process takes but it’s been over a fucking year. I can’t describe the level of frustration and hopelessness I deal with knowing there’s a plan in place but no way to execute it until I get the green light. 2. The regulatory bureaucracy for Soliciting donations is as hard if not harder than attaining a 501c3. As it stands there are a handful of states that do not require state level registration at a cost to annually be recognized as a non profit and allowed to solicit donations. As I don’t have a research plan to fundraise I haven’t dedicated the time to register in every stare (USA) but even if I did have a plan I barely have enough money to keep the foundation alive and in compliance with the IRS. This is why I haven’t started a go fund me for anything yet. This is the general backstory without taking account the amount of time, effort, resources and other HPPDers who have helped along the way and who sadly are all gone save one who have contributed to helping me get as far as I have which include the recruitment of Dr. McConnell. Understand this; ive reaches out to thousands of researchers and of the lot only a handful have expressed interest in helping us and of the all just Dr.McConnell who I believe is literally accepting the torch being passed to him from Dr. Abraham. This is what I’ve managed to accomplish since 2012 because I saw little to no effort being made by anybody to take this website as a site of support to an advocacy patient centric arm of our collective plight. Now imagine if we were organized... anywY to answer your question I really don’t know what number would work but if every HPPDer donated, had family and friends chip in, I’d like to think Dr. NcConnell would be highly motivated to get the ballrolling and if he were to find anything remarkable about this disease, it could lead to federal funding and maybe one day targeted treatment or a cure designed to restore us as we were. sorry for the delay in responding to you. Doing everything I can to hold a job and not end up on the street or worse. Hope1
  16. We’ve only raised $175 to date. As far as the study goes it’s been drafted and sent to an ethics review panel for approval. It’s both elegant and amazing. I’ve also connected our lead researcher, Dr. Harry McConnell with two major funders but I’m standing by on a reply from Harry for an update. I suppose it’s just a waiting game now.
  17. Ah I see Simon was the original poster for this thread. Thank you for creating an account and publishing your survey here. I’m confident you’ll get many responses.
  18. Throughout the past seven years, my efforts to raise awareness and create a medical research team are finally paying off for the Neurosensory Neuroregenerative Research Foundation. Below is a survey that was created by one of my contacts who seek to help out struggling patient population with a survey specifically designed for HPPD and VS. I encourage everyone to participate and share it as profusely as possible. THIS IS A DESKTOP ONLY PROGRAM! NO MOBILE DEVICES! Title: University of Sussex, UK, recruiting participants for an online questionnaireThe University of Sussex, UK, is recruiting participants aged 18 or over to complete an online questionnaire relating to the visual symptoms associated with visual snow syndrome and hallucinogen persisting perception disorder (HPPD). To participate you should experience the visual symptoms associated with visual snow syndrome and/or HPPD.The questionnaire will take approximately one to two hours to complete, depending on the number of questions you answer and the detail of your responses. It will include answering some questions about what visual symptoms you experience alongside on-screen illustrations of those visual symptoms. You will also be asked about how your visual symptoms impact your life. Other questions include those which ask about some aspects of your medical history. The questionnaire must be completed either on a laptop computer, a desktop computer or an iPad.You can complete the questionnaire in more than one sitting so long as you have cookies enabled and return to the same browser on the same computer. Your progress is automatically saved when you continue to a new page within the questionnaire. Your partial responses are saved for one week.The University of Sussex are carrying out ongoing research into visual snow syndrome and HPPD. This is the first of a series of questionnaires which will be released over the coming months. They require a large number of participants for their research and so you are encouraged to complete the questionnaire if you are able to.To complete the questionnaire, please visit: https://universityofsussex.eu.qualtrics.com/jfe/form/SV_blrsONUZAQ19BGZ Facebook:The University of Sussex, UK, is recruiting participants aged 18 or over to complete an online questionnaire relating to the visual symptoms associated with visual snow syndrome and hallucinogen persisting perception disorder (HPPD). To participate you should experience the visual symptoms associated with visual snow syndrome and/or HPPD. The questionnaire will take approximately one to two hours to complete, depending on the number of questions you answer and the detail of your responses. It will include answering some questions about what visual symptoms you experience alongside on-screen illustrations of those visual symptoms. You will also be asked about how your visual symptoms impact your life. Other questions include those which ask about some aspects of your medical history. The questionnaire must be completed either on a laptop computer, a desktop computer or an iPad.To complete the questionnaire, please visit: https://universityofsussex.eu.qualtrics.com/jfe/form/SV_blrsONUZAQ19BGZ Twitter:The University of Sussex, UK, is recruiting participants aged 18 or over to complete an online questionnaire relating to the visual symptoms associated with visual snow syndrome and hallucinogen persisting perception disorder (HPPD): https://universityofsussex.eu.qualtrics.com/jfe/form/SV_blrsONUZAQ19BGZ
  19. Throughout the past seven years, my efforts to raise awareness and create a medical research team are finally paying off for the Neurosensory Neuroregenerative Research Foundation. Below is a survey that was created by one of my contacts who seek to help out struggling patient population with a survey specifically designed for HPPD and VS. I encourage everyone to participate and share it as profusely as possible. THIS IS A DESKTOP ONLY PROGRAM! NO MOBILE DEVICES! Title: University of Sussex, UK, recruiting participants for an online questionnaireThe University of Sussex, UK, is recruiting participants aged 18 or over to complete an online questionnaire relating to the visual symptoms associated with visual snow syndrome and hallucinogen persisting perception disorder (HPPD). To participate you should experience the visual symptoms associated with visual snow syndrome and/or HPPD.The questionnaire will take approximately one to two hours to complete, depending on the number of questions you answer and the detail of your responses. It will include answering some questions about what visual symptoms you experience alongside on-screen illustrations of those visual symptoms. You will also be asked about how your visual symptoms impact your life. Other questions include those which ask about some aspects of your medical history. The questionnaire must be completed either on a laptop computer, a desktop computer or an iPad.You can complete the questionnaire in more than one sitting so long as you have cookies enabled and return to the same browser on the same computer. Your progress is automatically saved when you continue to a new page within the questionnaire. Your partial responses are saved for one week.The University of Sussex are carrying out ongoing research into visual snow syndrome and HPPD. This is the first of a series of questionnaires which will be released over the coming months. They require a large number of participants for their research and so you are encouraged to complete the questionnaire if you are able to.To complete the questionnaire, please visit: https://universityofsussex.eu.qualtrics.com/jfe/form/SV_blrsONUZAQ19BGZ Facebook:The University of Sussex, UK, is recruiting participants aged 18 or over to complete an online questionnaire relating to the visual symptoms associated with visual snow syndrome and hallucinogen persisting perception disorder (HPPD). To participate you should experience the visual symptoms associated with visual snow syndrome and/or HPPD. The questionnaire will take approximately one to two hours to complete, depending on the number of questions you answer and the detail of your responses. It will include answering some questions about what visual symptoms you experience alongside on-screen illustrations of those visual symptoms. You will also be asked about how your visual symptoms impact your life. Other questions include those which ask about some aspects of your medical history. The questionnaire must be completed either on a laptop computer, a desktop computer or an iPad.To complete the questionnaire, please visit: https://universityofsussex.eu.qualtrics.com/jfe/form/SV_blrsONUZAQ19BGZ Twitter:The University of Sussex, UK, is recruiting participants aged 18 or over to complete an online questionnaire relating to the visual symptoms associated with visual snow syndrome and hallucinogen persisting perception disorder (HPPD): https://universityofsussex.eu.qualtrics.com/jfe/form/SV_blrsONUZAQ19BGZ
  20. In the time you’ve been MIA, how much work could you have done? How much time has been wasted and how many lives lost in the process? Why don’t you report something when you actually have something worthwhile to report? i guess your time as a day trader didn’t work out...
  21. In the time you’ve been MIA, how much work could you have done? How much time has been wasted and how many lives lost in the process? Why don’t you report something when you actually have something worthwhile to report?
  22. I was doing ok until I developed low back and pelvic pain. Shit changes as you get older and with it coping mechanisms.
  23. Whenever I get the flu, serious cold or bronchitis, boughts of violebt coughing produce swirling tiny colorful spots in my vision. What does that signify?
  24. Some if not most of you may know I started a non profit for HPPD and VS with the help of several people with HPPD. After many years of hard work we have a neuropsychiatrist, Dr. Harry McConnell, on board who has taken up the mantle from Dr. Abraham and has designed the only fully comprehensive research study on HPPD. It will cover genetics, autoimmunity and utilize several means of neuroimaging. I’m encouraging all of you to get your family, friends even yourselves to donate toward this study because if something remarkable is found, it will change everything for us as a patient community. http://www.neurogroup.org/donate/
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