hope1

AGGRESIVE ADVOCACY

123 posts in this topic

Well the drug was intended for parkinsons and has only been used in monkeees for that so far. Giving LSD to a bunch of monkees and waiting for them to get HPPD seems kind of cruel and you couldn't tell if they had HPPD so you would think that they would need to start the trials with humans but if they haven't done that for parkinsons yet they are probably a ways off from doing it for HPPD. I'm sure they will do a lot of research beore starting a human trial and it will unfortunately take some time but if they do pursue this it is a very good sign because the more doctors doing legitimate research on HPPD the easier it will be to recruit new ones.

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Yeah i definately think your onto a winner hope. iv emailed a few others aswlel. Im also going to see a neurologist on the 1st of august so il be taking research articles and preaching to them

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I thought the neuropeptide was for parkinsonianism and had a neuroregeneration effect along with chemical rebalancing of the brain. If there's an opportunity to go back to my old self, I'll thank the monkeys in the way out and donate to animal rights for the rest of my life.

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Contacted another 150+ researchers today.

Made a few changes to my letter and any thoughts modifications are appreciated.

To whom it may concern,

I writing you in an effort to draw attention to a horrible acquired visual/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 spearheading

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 of 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 visit www.hppdonline.com to access articles and any other

relevant available info as well as the research grant.

Dr. Abraham (http://www.drabraham.com/) is nearing the age of retirement and without him, this patient population will be lost...

Please, please help...

This is the link for the available grant.

http://hppdfoundation.com/

I'm also attaching the latest study along with subsequent links to give you as much information as possible.

   

http://hppdonline.com/index.php?/topic/689-massive-hppd-article-download-access-30-most-important-free/page__pid__4641#entry4641

http://hppdonline.com/index.php?/forum/8-active-research/

To the over 185 individuals blindly copied to this message associated with the university comprising of research assistants, PhD students, professors etc, some of you may be doing work parallel or directly related to this disease state. For those of you who are not, please share this information with your colleagues in related fields who might. 

The bottom line is that there are an unknown amount of kids who use illegal drugs on a recreational basis. Some are fortunate to be unscathed but for others there are degrees of sustained damage. While some suffer from minor visual disturbances others suffer a vast array comprising of not only high frequency and intense visual disturbances but cognitive deficits, unrelenting anxiety,  depersonalization/derealization and an overall poor quality of life.

Please give this information due consideration as the potential to alleviate the suffering of this patient population is why people get into research for neurological disorders.

Thank you for time and attention.

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Contacted another 150+ researchers today.

Made a few changes to my letter and any thoughts modifications are appreciated.

To whom it may concern,

I writing you in an effort to draw attention to a horrible acquired visual/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 spearheading

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 of 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 visit www.hppdonline.com to access articles and any other

relevant available info as well as the research grant.

Dr. Abraham (http://www.drabraham.com/) is nearing the age of retirement and without him, this patient population will be lost...

Please, please help...

This is the link for the available grant.

http://hppdfoundation.com/

I'm also attaching the latest study along with subsequent links to give you as much information as possible.

   

http://hppdonline.com/index.php?/topic/689-massive-hppd-article-download-access-30-most-important-free/page__pid__4641#entry4641

http://hppdonline.com/index.php?/forum/8-active-research/

To the over 185 individuals blindly copied to this message associated with the university comprising of research assistants, PhD students, professors etc, some of you may be doing work parallel or directly related to this disease state. For those of you who are not, please share this information with your colleagues in related fields who might. 

The bottom line is that there are an unknown amount of kids who use illegal drugs on a recreational basis. Some are fortunate to be unscathed but for others there are degrees of sustained damage. While some suffer from minor visual disturbances others suffer a vast array comprising of not only high frequency and intense visual disturbances but cognitive deficits, unrelenting anxiety,  depersonalization/derealization and an overall poor quality of life.

Please give this information due consideration as the potential to alleviate the suffering of this patient population is why people get into research for neurological disorders.

Thank you for time and attention.

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In the revised letter the latest study conducted by Dr. A is present but not in the above post-FYI.

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i admire your work Hope, keep it up. I will do a project on my own since HPPD does not exist in the european litterature.

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I really think you need to name the disorder in the letter. Sorry if I'm just missing it.

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I'm deliberately not naming it.

I do not want to prejudice our case before it is scientifically explained.

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Many people are weary of opening liinks in E-mails from strangers, without saying the name if a doctor decides not to open the link the letter will have done nothing to raise awareness for our cause, even if a doctor doesn't go any further just enough of them hearing the term Halucinogen Persisting Perceptual Disorder will make them more likely to look into it in the future or give them the power to look it up themselves without the use of your link if they are very cautious about such things. I think that you are greatly overating the stigma associated with pschedelic drugs, I guarantee that many more of the neurologists that you've been mailing experimented with them than you think. But you're the one motivated enough to send all these letters so its up to you.

I feel like I should be helping you more. I'm too lazy to find all their e-mail adresses but If you give me a list of E-mail adrresses I will send them my own letter. If we send them enough they will get curious eventually.

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I hope you don't mind, but I have tidied up the English and changed some of the wording to quickly make the point (you only get one chance with an email) .... I agree the disorder needs to be added, from the off.. My nuero only took me on because he found it very interesting and moved me to the top of an 18 month waiting list.

feel free to discard:

To whom it may concern,

I am contacting you in an effort to draw attention to a visual/neurological disorder named Hallucinogen Persisting Perceptual Disorder (often referred to as HPPD). The disorder has, for the most part, gone unrecognized for decades, despite a plethora of research articles available to the medical community.

Dr. Henry Abraham, a Harvard psychiatrist, has been spearheading research into this neurological disorder and is assisted by a phd student in substance abuse disorders, Mr. David Kozin. Both have made great strides, but more needs to be done to pinpoint the source of this disorder.

I am contacting you, on behalf of the HPPD community, in the hope that you might spend some time researching this condition or forward this email to someone who may like to research this disorder. The notable researcher, Dr. John Halpern, from the Harvard McLean institute, received a $100,000 grant in 2010 to research HPPD, but has ceased his efforts for continuing research. The available grant money is still on offer and the community is hoping another researcher will step forward.

Please visit http://www.hppdonline.com to access articles and other relevant available info, as well as details on the research grant.

Dr. Abraham (http://www.drabraham.com/) is nearing the age of retirement and without him, the fight against HPPD will be almost completely overlooked by the medical community.

Thank you for time and attention.

(Your Name)

Further reading:

http://hppdonline.co..._4641#entry4641

http://hppdonline.co...ctive-research/

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Iv been emailing a few others. No replies as of yet but I wont give up. also intending to make a video for youtube. I have alotnof subscribers through bmx and my car so thatl get awareness up

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Good job man.

If the Internet did not exist there would be a host of problems in dealing with HPPD.

1. All of us (those with a string sense if self preservation) would go through life undiagnosed as medical professionals are not schooled on this condition.

2. Family and friends would not know what to do or how to deal and it's because of the creation of this forum that we are permitted to come learn, cope and understand this condition.

3. It also serves as a fantastic tool to spread awareness about the hardcore, concrete, life altering and potentially lethal consequences for illicit drug use,

"Drugs are bad, drugs are bad, don't do drugs" is the mantra that we all grow up with but really don't understand it's meaning. Are bad people doing drugs? Does that make them bad? Do drugs turn you into a bad person? Why are drugs bad?

This portal explains what could happen, to anyone, in using hallucinogenic substances and for every parent who had a child get this, you owe it to yourselves to make sure that awareness is spread about this condition so that a friend, co-worker or a neighbor with a kid can explain what the pitfalls and potential dangers are in drug use.

It's a responsible adult conversation that has to happen in every household. Now you might be thinking that I have this anti drug use position but I don't. A person should have the right to do whatever they want provided all the information has been shared. This site, to me, means so much and the work that David is doing that on both the preventative and advocacy research side we must all be engaged and proactive in order to make an impact.

Finally advocacy...

There will never be enough emails to send, phone calls to be made and other efforts to garner the help needed to research this condition until we have a focused team of professionals working diligently on it. That's my end goal as I see too many discoveries in the neuroscience field to ignore the possibility that we could potentially be helped, maybe even cured in our lifetime. Lofty aspirations, perhaps unrealistic but nothing is going to happen if we don't try so thank you 2muchcandy for all your efforts but I highly encourage the rest of you to help.

15 years is a long time and I'd do anything to spend some time on this planet being the old me again. I don't want you to go through it nor do I want other reckless kids to have to endure this either.

Help me help yourselves is all I'm asking and maybe, just maybe if enough of our pleas are heard from neuroscience departments in every university, every biotech firm and every patient rights organization maybe that day will come when the following will occur.

"How are you?"

"I'm fine."

What a luxury indeed to say those words "I'm fine" and actually mean it.

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Getting involved in discovering HPPD treatments is not totally unrealistic. Someone had mentioned earlier, that having to give a bunch a monkeys hallucinogens seems like a difficult thing. But you have a lot of subjects here, on this site: humans, new ones coming here and all over the world too. I truly believe this disorder is not as rare as people think. But the people who have it the worst, it never goes away. I think the testing has to be on people who have the disorder already (esp. people who have just gotten a severe case recently). And I think that the testing has to be based in discovering the virtually-exact actions on a neuro- or bio-chemical basis. But the testing should be to find a drug (with minimal side-effects) that will truly make the disorder treatable. The problem is that the idea of exploring holistic and other treatments makes it seem like we are all floating in the ether.

The next step is to get the people who have a real passion and interest on this subject (some people on this site etc.) to establish a real group that will find the proper school/foundation/researchers for all of our benefit.

I don't know exactly what is going on with Harvard, Kozin, and Abraham. But I know there is that $100,000 grant available, I think. There is one of the UC schools (either UCSB or UCSD) that was doing something, maybe try UNM, or the Cottonwood Foundation. Maybe someone at NYU or Columbia? We need a new doc or student who has some grant money from one of these more liberal institutions. If you guys need to write something or edit something or whatever,

I will help and I am here to offer all my services, as I do want this "thing" to happen for all the new people who end up with this problem of HPPD.

Thanx guys

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If you show me a list of E-mail adresses I will definately write to every one of them. That way they all get two e-mails instead of one, and I might take a different aproach like telling my personal story or something. I can write up a draft if you want. I know I shouldn't be but now that HPPD isn't my biggest concern I am definately too lazy too spend so much time finding the e-mails of nerologists when i know that youve already done all that hard work.

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Also I have only an Associates degree and (while I could possibly convince them) we need somebody who has at least a Bachelors or (preferably) a PhD or MD to qualify for the grant. It would also be nice to have some people who are truly doing nothing, because of their disorder, to congregate once every few months or something to organize our proposals properly. The best thing, while i am not sure this is possible, would be to have a lot of HPPD sufferers in one place or location, as to bring our brains together with the power of numbers. What do you all think is the next logical step, or preferable means?

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This maybe a long shot but try the Cottonwood Foundation. This is basically Richard Strassman, the DMT pioneer guy. This guy may not be the sober gent that we are looking for but worth a shot. Try to make it as professional as possible and perhaps post it to see what everyone says. The email is:

rickstrassman@earthlink.net

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I got a couple ideas----might be a little far out but maybe we can get somebody onboard or point us to the right person and make our ideas credible:

John Hopkins, Ram Dass, Mayo Clinic, CNS Neuroscience and Therapeutics, and University of Colorado. I'll see if i can get some emails. Give me a bit.

also there is this guy in canada----i think med student--- http://hppdresearch.blogspot.com/2012/01/welcome.html

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Bravo hope1!!!!

Cleveland clinic has alot of research going on. I think they would be a great one to contact.

What about the hospital in England that's so into dp/dr?

Whoever makes the magnet chair would be a great one to get in touch with there really trying to get as much coverage as they can for there chair if it treated another disorder they would love it!

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What about just getting awareness out there if each of us on the same day put out 500 flyers in everyone's home town. It could be very simple like do you or a loved one have hppd? Go to this web site. If you wanted you could leave a number for a support group and a local doc. that would treat hppd. Doctors always want refferls they love it so you could become a local rep. For hppd drop by docs. Offices drop lititure leave your number asking if they would be willing to treat these patients. Idk just ideas.

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Pfizer’s Medical and Research. I think getting in contact with each drug company like this one would be very important.

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Yeah iv emailed a few places, i used the " here in the united kingdom we have fronted the medical movement in making progress....blah blah " all that patriotic shit in the hope a plucky young scientist will take up the challenge

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The following posts are a list of emails for each and every one of you to state your case and make your plea as to why this condition is probably repairable and that we deserve mercy.

This is but a FRACTION of who I contacted but start writing to them, all of you and let's see where this goes.

Good luck

bleto@haverford.edu

dvandyke@haverford.edu

Frade@cajal.csic.es

TOkamoto@quarkpharma.com

qbi@quarkpharma.com

silencetherapeutics@mcomgroup.com

duboise@usm.maine.edu

mailto:monasg@rpi.edu

mailto:biotech-info@rpi.edu

mailto:info@uniqure.com

mailto:info@bluebirdbio.com

mailto:mkatz@brainstorm-cell.com

mailto:m.gazzaniga@psych.ucsb.edu

mailto:miller@psych.ucsb.edu

mailto:rosenblatt@psych.ucsb.edu

clive.svendsen@ cshs.org

mailto:osporns@indiana.edu

mailto:mail@oliversacks.com

mailto:Henry.markram@epfl.ch

mailto:vramachandran@ucsd.edu

mailto:damasio@usc.edu

mailto:erk5@columbia.edu

mailto:gero.miesenboeck@dpag.ox.ac.uk

mailto:fiona.woods@dpag.ox.ac.uk

mailto:info@rni.org

mailto:info@omneuron.com

aditishankardass@gmail.com

mailto:info@wfneurology.org

mailto:theinz@aan.com

mailto:douglas.ormrod@neurological.org.nz

mailto:karen.powell@health.usc.edu

bd@caltech.edu

stefano@hsr.it

spp24@cam.ac.uk

ma@einstein.yu.edu

mehler@einstein.yu.edu

C.David.Allis@rockefeller.edu

Cori.Bargmann@rockefeller.edu

Sean.Brady@rockefeller.edu

:taryan@med.cornell.edu

taryan@med.cornell.edu

yhuang@gladstone.ucsf.edu

pdickson@ucla.edu

pdickson@ucla.edu

Martin.Tegenthoff@ruhr-uni-bochum.de

mailto:neurobio@mednet.ucla.edu

tbaden@mrc-lmb.cam.ac.uk

douglas.asede@cin.uni-tuebingen.de

andre.chagas@klinikum.uni-tuebingen.de

bernd.antkowiak@uni-tuebingen.de

hermann.ackermann@uni-tuebingen.de

abeles@vms.huji.ac.il

silencetherapeutics@mcomgroup.com

kskol@isisph.com

bd@rosettagenomics.com

Frade@cajal.csic.es

tbaumann@ceregene.com

Mfarrer@can.ubc.ca

info@alleninstitute.org

Kalipada_Pahan@rush.edu

gang.wu@mssm.edu

info@incf.org

Lars.Paulin@helsinki.fi

cnr@ed.ac.uk

walsh@ossianix.com

stealth.info@stealthpeptides.com

dsantos@mcb.harvard.edu

alice_yu@mcb.harvard.edu

kkoszka@mcb.harvard.edu

natwater@fas.harvard.edu

ichida@mcb.harvard.edu

ekiskinis@mcb.harvard.edu

blannon@mcb.harvard.edu

myamaki@mcb.harvard.edu

gboulting@mcb.harvard.edu

sdeboer@mcb.harvard.edu

son@mcb.harvard.edu

tabansky@mcb.harvard.edu

akimura@mcb.harvard.edu

ascoli@gmu.edu

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Thank you! I will definately start on a draft I'll post it here for review when I'm done.

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