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HPPD letter for researchers/funder raisers/media coverage


Jay1
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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

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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.

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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!

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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...

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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)

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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.

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  • 3 months later...
  • 4 months later...

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

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  • 2 weeks later...
  • 1 month later...

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 by Guest
Possible Link Error?
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