Jay1 Posted November 7, 2014 Report Share Posted November 7, 2014 Hi, as some of you may have seen, me and Hope1 are preparing an email document that can be sent to various people to try and get us exposure, funding and/or research. I have started the document here: https://docs.google.com/document/d/1g4LNSB644YAb6Md152pdVLYJl04B8RE7Efw-joYSVIk/edit?usp=sharing I really need help with the more scientific aspects of the document, the "What is HPPD?" section, and the current and future treatments sections. I have left the document editable, so feel free to add to it and I will edit it further at the end. We need to keep it fairly quick and to the point, we can leave further reading links at the bottom. Let me know if you can help, Thanks, Jay Link to comment Share on other sites More sharing options...
Guest Posted November 10, 2014 Report Share Posted November 10, 2014 I made some changes but certainly can use the help of others that are more scientifically inclined Link to comment Share on other sites More sharing options...
Jay1 Posted November 10, 2014 Author Report Share Posted November 10, 2014 thanks hope.... I want to keep the "suffering the effects" part less about symptoms (which can go in "what is hppd") and more about the hardships we face because of the explained symptoms... something more emotive. I have edited the document a little. Link to comment Share on other sites More sharing options...
Guest Posted November 10, 2014 Report Share Posted November 10, 2014 Maybe three different letters must be generated for media, fundraising and research? Link to comment Share on other sites More sharing options...
Guest Posted November 10, 2014 Report Share Posted November 10, 2014 Got a response from the NIMH today and they made it clear that they are not going to conduct research into hppd. This must change... Link to comment Share on other sites More sharing options...
Shadowplay Posted November 10, 2014 Report Share Posted November 10, 2014 Got a response from the NIMH today and they made it clear that they are not going to conduct research into hppd. This must change... Fuck, that's terrible. They seem to cover most things such as eating disorders, suicidal tendencies and even ADHD. I don't understand why they won't help. I'm really positive about your doing this but I think our best shot is to research and go for the "Visual Snow Syndrome" as it is the same thing basicly. Just that our symptoms was caused by drugs which at many places excludes us from healthcare. We have a total different opinion on drugs then probably 90% of the human race. For example in Sweden there are politically involved people with ministry post that belives that cannabis can kill you and it that it happens every day. That's the level we are facing. Most people hate drugs because it ruins lifes. So you fuck up your life and then you want help for it. But that's not how the war on drugs work. It works by arresting, convicting and rehabilitate the "victims" of drugs. As long as we don't distribute or use drugs anymore the government will be satisfied. Think of us that we are kind of alive walking WARNING SIGNS for drug usage which they'll probably gain something on. EyeOnVision that earlier this year proved what's causing the visuals (hypermetabolism in the lingual gyrus and how to diagnose it) with it's latest campaign is our best shot by far. http://www.gofundme.com/visual-snow Every patient seems to be unique as well since there are so many drugs that affects the brain differently but now we kind of know what the problem is. The next research will be very interesting. 53k in 3 months aint bad at all. And the Dr. Prof. Goadsby seems motivated to find a solution. Keep it up! Link to comment Share on other sites More sharing options...
Guest Posted November 11, 2014 Report Share Posted November 11, 2014 Shadowplay Dr.Goadsby's work is certainly welcome but research, advocacy and outreach dies not begin and end with just one man. The NIMH position is criminal, bordering inhuman and if I need to screenshot their response and post I will with the intent of infuriating all of you into action. Leaving us to our demise because we are built a certain way, more susceptible to the genetic effects of certain compounds is not an excuse to neglect us not justification to let us suffer. It's going to take WORK to get over this hurdle and that's putting it rather mildly but it must be done. Forgive me but I knew early on that I would not settle for an ordinary life but this is not what I had in mind. I'll take ordinary just fine, if you can't support the effort than please let it alone. I, we need people that will inspire... Link to comment Share on other sites More sharing options...
Jay1 Posted November 11, 2014 Author Report Share Posted November 11, 2014 I agree the visual snow will be the safer approach, but thankfully there are some very motivated people pushing that. We do need to keep pushing HPPD though, as, as close as the two illnesses seem, there are some differences. I find it hard to believe that anyone who hasn't taken drugs can suffer dp/dr and that trippy feeling in quite the same way (if they do, then I feel infinitely more sorry for them, as at least we somewhat understand that feeling) Link to comment Share on other sites More sharing options...
Guest Posted November 11, 2014 Report Share Posted November 11, 2014 Jay, I've been lurking VS boards of late and many sufferers do have a drug history but seem to discount drug use as s cause to their condition; deliberate I'm sure due to the stigma. Will look up the science jargon on hppd tonight and add more to the letter. Link to comment Share on other sites More sharing options...
Jay1 Posted November 11, 2014 Author Report Share Posted November 11, 2014 the hppd wiki page is pretty good for the science stuff... we need to try and condense it down to 2-3 paragraphs though... I think we need to keep it fairly short, but with links to further reading. http://en.wikipedia.org/wiki/Hallucinogen_persisting_perception_disorder Link to comment Share on other sites More sharing options...
Guest Posted March 1, 2015 Report Share Posted March 1, 2015 Unfortunately I do not posses a mind that is scientifically inclined and cannot articulate hppd in a meaningful way and in s coherent manner to a researcher but if I could I'd approach these guys first... http://www.opencenter.org/events/a-new-understanding-the-science-of-psilocybin/ Link to comment Share on other sites More sharing options...
Guest Posted July 27, 2015 Report Share Posted July 27, 2015 So, I have finally put together a simple website: www.neurogroup.org that is designed to recruit reserachers and funding for both VS and HPPD as the two conditions seem to share the same symptom complex. By commingling the two together I'm hoping a cross disciplinary approach can be made in solving this neurological rubix cube. If any one feels like contributing to improve the site in any manner, feel free to shoot me an email at neurogen00@gmail.com Link to comment Share on other sites More sharing options...
onelovez Posted August 5, 2015 Report Share Posted August 5, 2015 Hope1 do you still want to be collecting funds for a research of many different conditions apart from HPPD and VS or has anything changed? Link to comment Share on other sites More sharing options...
Guest Posted August 9, 2015 Report Share Posted August 9, 2015 Just HPPD and VS as the two seem to be interrelated. Did you check out the website yet? I think it's pretty clear what the overall mission is. Link to comment Share on other sites More sharing options...
Guest Posted September 12, 2015 Report Share Posted September 12, 2015 (edited) The Neurosensory & Neuroregenerative Research Foundation has composed an advocacy and outreach letter to members of key Congressional Committees with the request in the allocation of funding for HPPD. Understand that any action that leads to research begins with the patient, their family and friends. Please be proactive and get as many letters sent as humanly possible. A cure can one day be found and you are the key.Click the link below:http://www.neurogroup.org/HPPD_ADVOCACY_%26_OUTREACH.html Edit from dk: If that link does not work, try: http://www.neurogroup.org/VS_%26_HPPD_ADVOCACY_%26_OUTREACH.html Edited November 9, 2015 by Guest Possible Link Error? Link to comment Share on other sites More sharing options...
Purps Posted March 7, 2016 Report Share Posted March 7, 2016 Thank you so much for putting forth so much effort! As a new comer here, this is motivating! Let's keep fighting! Link to comment Share on other sites More sharing options...
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