hope1

AGGRESIVE ADVOCACY

123 posts in this topic

At times when I'm at my worst, I start thinking what can I do to get the wheels of research going on my own?

I've looked up the rosters or many universities and sent indivduals performing reserach into neuroscience a brief email along with a link to the hppd foundation grant. Maybe this approach can be refined into a professionally written form letter to get the attention we deserve and get more heads involved in this condition?

Admins-What do you think?

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iam not an admin but i think this could be a great idea. here are people from all around the world so we could translate it into many diffrent languages.

but research needs alot of money and only promising researchers should be contacted because otherwise it would be a waste of money.

but i also think it could be a chance for researchers to work on an unknown condition maybe that would be a launching pad for their carrier.

i know dr abraham does the best somebody can do for us but to "get more heads involved" it could be a good plan.

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I dont understand why people havnt picked up on this. Its an increasing problem with no cure, noone knows the cause, theres so many of us from different walks of life. Wer all happy to experiment and are up for tests why has noone fucking studied this foul disorder

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It's a good idea....

It must be really hard to study drug induced disorders though. There are so many variables.... People taking different drugs, different amounts, multi drugs, no knowledge of what drugs were cut with etc.... Must be an absolute nightmare to try and find a good research group (eg, have only ever done LSD, have only tripped once, have all taken the same/similar amount)

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I am commenting on youtube videos to make poeple read up on hppd :P

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I heard about this website on T.V. where you can create online petitions and have people sign them. http://www.change.org/ It probably wouldn't do much but maybe someone should create a petition about HPPD there, if enough people sign then maybe we could send links to it in the E-mails asking for research just to show that it effects a lot more people than most doctors think.

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I have alot of youtube subscribers cos of bmx and Im sponsored by a local t shirt company. Kight get the owner to make an hppd shirt and try put hppd links in my latest bmx videos. Raises public awareness

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i think we shoulld only try to raise awarness of researchers, docs....

it could be dangerous to raise to much puplic awarness because drugs are like satan for the "normal" people.

so it could be that no one wants to workon this topic because people could use it as a anti-drug argument.

do you get what i mean?

i like hope1's suggestion someone (i think david would be the best because he has the most knowledge in this topic) should write a professional letter we translate it into other languages and someone send it to every neuro science institute we could find on this planet^^

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I know Richard Branson has said a lot about drugs in the past, and so I wrote him a letter a couple of months back. Never recieved a reply. :P

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I'm glad to see some feedback on this topic.

First things first...

We cant presuppose what people are thinking and feeling about this condition and must proceed under the assumption that empathy and humanity superceed any and all preconceived notions of weirdness.

The fact of the matter is that some of us mean different things to different people.

Take me for example...

I'm a brother to five other people, I'm a son to two wonderful parents and a father to a special needs child. As a man in my middle age post divorce, I no longer have many friends but the ones that do matter and they couldn't tell anything is really wrong with me, other than I don't drink or do drugs. I sell jewelry for a living and play a part in one of the happiest periods in some peoples lives; weddings, engagements, aniversaries, etc...

My extra curricular activities also have a very strong social component that engage me within the community.

Basically what I'm trying to say is that I matter and you matter, all of us matter and deserve help. I will not and have not settled on what other people think but what matters to me is what the people who can potentially help and what research can be done to not just help us but prevent others from having their lives derailed by this horrible affliction.

This is why it's important to have the moderators talk amongst themselves along with David and approach Dr. Abraham on how to best go about this. Dr. Abraham is the only voice we have in the entire medical community. Without him I'm of the opinion we'd be in deep shit. We need to capitalize on Dr. Abraham and his ability to find a successor or multiple successors to his work. It's possible and it shouldn't take that much work but maybe instead of a letter from random HPPDers, a letter from him, a call to action, plea for help is in order. He's not going to be around forever and medicine is making giant strides. We should not be neglected or left behind. I've lived for 27 years without any mental/neurological defect and I'm not going to live like this until I expire. I hell bent on seeing the sky as a normal person can. I am determined to have a conversation or be functional at a job without being preoccupied with DR/DP distracting me from being fully effecitve and traumatized during these periods at the same time. I am confident that there's an answer but it's not in the here and now but is based on what we, as a community do now that will effect our future. I know I'm sounding Doc Brown sorta here but seriously imagine our community being actively engaged in raising awareness about this condition to professionals in the medical field that could do research, the top notch variety, and maybe find the root cause of this crap.

Now imagine if we don't do anything, you know what happens?

Nothing.

We need a plan in place to not only help pass on the torch of Dr. Abrahams legacy and his work but to actively engage the neuroscience community to recognize this patient population and fucking do something about our plight.

It breaks my families heart knowing that everyday since my 27th birthday that I am no longer the person I was but a shadowy reflection of that fun loving guy, who loved life and would do anything to help anyone. It hurts my friends that I'm not able to be with them and create wonderful memories and the worst is the part that I can't be the dad I want to be for my little boy and push myself to the max and give him whatever he needs and wants.

We must grow up a little bit as a community and come up with a plan that effectively markets the condition, the population and encourages research specifically into solving the mystery behind HPPD. I'm crying as I type this because it feels like a release of something I've been dying to share with this community but couldn't figure out how best to express myself or maybe I wasn't ready? Either way I'm saying it now and need help. We need help and I want us all to get our lives back. I want to feel the pleasure and experience the passage of time. I want to grow old gracefully and savor ever second of life and the beauty that's in the world and I think that medical researchers not only should help but should want to help.

I posted this link not long ago and I thought it would be a good start to contact the head researcher and create a sub-study of HPPDers but we need to perhaps do that and more, much much more. Let's put plans on the table and figure out how best to go about it. No exuses at all please.

http://research.vtc.vt.edu/volunteer/

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I've spent a considerable amount of time contacting research scientists in the attempt to spread awareness about this condition by pointing them to the site and informing them about the available grant monies. I'd like to make a suggestion. In trying to retain the attention of medical professionals I would like to make the suggestion of doing a bit of formatting in that the site would be more effective if the home page displayed in bold print links to scientific literature and studies on HPPD instead of the many threads where most of us are in dialogue with one another. Not that it isn't important to have this function but perhaps a button at the header which takes members to a different page where all the sub forums ate listed in the way the current homepage is set up. I think in terms of credibility we need to grab the attention of the scientific community by displaying first and foremost the most pertinent and relevant information to researchers as they should be the focus of attention second to those who of course have this condition. Admins, please make it a point to discuss this amongst yourselves and David. I've actually received two replied out of 120 emails. The odds aren't great but two can easily turn into two hundred if we do a bit of formatting and not just maintain attention but encourage those scientific minds curious enough about this condition to circulate the information to wider circles.

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I also want to add that I have received encouragement from David to reach out to the scientific community because it further helps him help us! That's what his efforts are really all about when you think about it. Look up in google news and query terms like "neurology" "neurobiology" "neurogenesis" "neuroregeneration" "neurorestoration" "neural stem cell therapy" nanomedicine and brain" "peptide research and brain." Think of creative terms that will yield an array of results which will potentially give you a lead on a scientist or researcher who is conducting research which may help and/or suggest to the contact to disseminate the information to colleagues that might be interested. If we work on a unified front on this we could potentially expedite the possibility of ground breaking research and a cure. Below is an example of an email I've been circulating.

To whom it may concern,

I writing you in an effort to draw attention to a horrible neurological disorder which has basically gone unrecognized for decades despite a plethora of research articles available to the medical community that I believe could be helped, possibly cured by your research.

Such notable researchers like Dr. John Halpern from the Harvard McLean institute has received a $100,000 grant back in 2010 but for reasons unknown to me he has ceased his efforts for continuing research nor has anyone else applied for the available grant monies since.

Dr. Henry Abraham, a Harvard psychiatrist, has been spearheadingĀ research into this horrific acquired neurological disorder and assisted by an individual getting his phd in substance abuse disorders, Mr. David Kozin. Both of them have made great strides but not enough to draw more desperately needed attention and utilizing state if the art techniques to pinpoint the source of the dysfunction.

I beg you to spend some time researching this condition and help those that continually suffer with little to no relief. Please visitwww.hppdonline.comĀ to access articles and any other relevant available info as well as the research grant.

Dr. Abraham is nearing the age of retirement and without him, this patient population will be lost...

Please, please help...

Thank you for your time and attention

----

So like I said if we contact every university that has a neurology department or research hospital or private firms and start ups that specialize in regenerative medicine maybe we can cut our wait time significantly. I don't think we are special cases as much as we are unlucky ones but we can make our own luck by being proactive. I urge all of you to take a serious interest in this and work together in getting the attention and help we all deserve in the hope of leading a normal life again.

There are degrees if HPPD and I'm if the opinion that nobody walks away from drug use unscathed. It's just a matter of degrees but the point I'm trying to make is that the numbers of people who suffer from this condition have never been quantified but it's simple to assume that those numbers greatly exceed the poor souls who haunt this board.

Get busy living or get busy dying...

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Good letter but i don't see where you mention the disorders name and that could be a very important thing.

Celebrities are some of the most influential people because they posess both fame and fortune. I believe that reaching out to celebrities afflicted by HPPD or other mental disorders could be very beneficial to our cause. The lead singer of the Counting Crows (great band), Adam Duritz, is know to have derealization. One of the songs he wrote also mentions escaping the static every time he tries to sleep. To me that sounds like a case of HPPD with extremely mild visuals. The counting crows have a charity organization (I think its called the grey bird foundation or something like that) and Adam is known to be very involved with fans and active on twitter. I think contacting people like him could bring publicity and extra funds to our cause. I am to lazy to contact him right now but I think that someone should. I dont have a twitter but everyone on here who does should tweet to him about HPPD because aparently he responds to a lot of fans on twitter.

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Thanks for the input Ferret.

The letter is lacking but that's why I started the thread. To get ideas and formulate a general letter posted on the site for us to copy, paste, sign and send to anyone who can help. If you have the means to get physical and electronic addresses for celebrities suspected of having this disorder GO FOR IT!!!

What do you have to lose?

All we have in this life is time.

I'd like to think that these efforts might shave years off of suffering from HPPD if we finally got some help.

Thanks again for responding and do what you can to keep the momentum alive.

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Im gunna try get a hold of brian molko from placebo. Im convinced hppd from videos lyrics and hints.

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In the past several days, I've contacted roughly 200 hundred researchers after having made some changes to the form letter I drafted. Hopefully, more responses will come and with that attention to this disorder. Please follow my lead. The more emails perhaps the better?

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I plan to at some point I'm just too lazy right now and I'm trying to not think about hppd.

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Contacted another 200+ today.

If more heads are involved the sooner we can expect results...

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I havnt recieved any replies yet. which i suppose is fair enough its been a day, i need to step up, iv emailed 12 so far

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Out if the many research scientist I've contacted (over 500) I received about 3-4 responses. The one and most positive response is from a researcher who is experimenting with a neuropeptide that is have a neuroregenerative effect on apes with parkinsonianism. I don't know if this approach will work but it's a solid lead from someone who took the time to research the condition, understand the scope of our cognitive and emotional deficiencies and thinks he can help. I hope David and Dr. Abraham follow up with this as it looks interesting. Look up "magic peptide" in the research section for more info.

Below is a copy of the emails

Dear XXX,

Thank you for your suggestion. In fact, after your email, I have started reading about HPPD to see if we can apply for a grant and continue research HPPD.

Wishing you happy 4th of July,

Kali.

Kalipada Pahan, Ph.D.

Professor of Neurological Sciences, Biochemistry and Pharmacology

The Floyd A. Davis, M.D., Endowed Chair of Neurology

Department of Neurological Sciences

Rush University Medical Center

1735 West Harrison St, Suite 320

Chicago, IL 60612

Ph: 312-563-3592; Fax: 312-563-3571

Email: Kalipada_Pahan@rush.edu

Dear XXX,

Happy 4th of July. Sorry, for my delay. Actually our university filters everything and your emails were quarantined. I just sent you one email regarding possible research on HPPD. I would be glad to examine our peptide in this disease condition.

Thank you so much for your interest in our research.

Kali.

Kalipada Pahan, Ph.D.

Professor of Neurological Sciences, Biochemistry and Pharmacology

The Floyd A. Davis, M.D., Endowed Chair of Neurology

Department of Neurological Sciences

Rush University Medical Center

1735 West Harrison St, Suite 320

Chicago, IL 60612

Ph: 312-563-3592; Fax: 312-563-3571

Email: Kalipada_Pahan@rush.edu

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Awesome man. Thank you for doing what you have been to get some attention for HPPD.

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I'm still in utter shock that someone as prestigious is not only taking this condition seriously and reading up on it but actually thinks he can help. I told 2muxhcabdy in a private PM that the reason why aggressive advocacy has to work because it's never been done before. It's always been "oh just accept it"-fuck that or should I say we have no choice. I want to create choices.

Now that he wants to help and I want to try this neuropeptide in the worst way as I'm tired of walking around and felling retarded most of the time, how do we go about it?

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