# Donations for a cure



## bark (Nov 7, 2005)

I want to start a Charity for DP/DR to help raise money to find a experienced team of doctors to research and make this Disorder known to the public and hopefully find some answers and a possible cure. Please answer truthfully for I would have to take this prodject on full time with putting my career to the side for a while. Thank you for your support,

Bark

If you were able to donate, how much could you afford to contribute? And would you take part in asking the public for donations? The reason i'm asking is because I need to get an idea of what can be offered to this potetial group of doctors. It won't be cheap.

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## suz (Mar 26, 2007)

I think you'd be incredibly lucky to make even a small amout. Mental Health charities are something that people have a tendency to shy away from.

'We don't want to be tarred with the crazy brush...'

But yes, I'd donate... I don't have much but I desperately would love to get better.

Good luck :roll:


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## ihavemessedupdreams (Apr 19, 2007)

there is no cure the cure is within you. one thing I find helps lots is if you like it


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## J. (Apr 2, 2007)

crap. There is something wrong. It there was 1 pill that took it away. I would pay alot!


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## jonnyfiasco (Apr 20, 2007)

J. said:


> crap. There is something wrong. It there was 1 pill that took it away. I would pay alot!


Not going to happen. Ever.


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## PPPP (Nov 26, 2006)

Might help first to donate money to a public awareness campaign.
That would be cool.

I could donate design work for online ads or something though.
We have alot of talented people here who could put those talents to work on this I bet.

edit: It might be possible to get people to donate things for an online auction to raise funds?
I'm pretty sure most of us could scrounge something up or make something.
only problem I can see would be dealing with the shipping.


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## Guest (Jun 22, 2007)

Would your charity by a UK registered one?


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## suz (Mar 26, 2007)

I vote for raising awareness. I'd definately play an active role in that too.

Great idea.


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## Guest (Jun 23, 2007)

Well running naked down your local city while waving a flag which says "Depersonalization is wanky!" might get you "awareness" from others... although people may misjudge us then...


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## severed (Jun 11, 2007)

If people wanted to auction off stuff to raise money for dp/dr I'd be willing to contribute art. Raising awareness would be the best way to go, you need to raise A LOT of money if you want to make a significant impact on science.


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## Ludovico (Feb 9, 2007)

DP is cured by changing your attitude, no pill or treatment is going to do that.


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## Guest (Jun 23, 2007)

If you members are truly serious... we need to link up with other DR/DP sites.


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## 17545 (Feb 14, 2007)

I wouldn't mind donating a large portion of my next paycheque.


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## bark (Nov 7, 2005)

Ok, at least we're getting somewhere!
Your time helping spread the word can also be counted as a donation. We need for than money, we need participation just as much. Someone mentioned about help with a web site...That would be a huge contribution. We cannot just sit around and wait for this disorder to go away by itself. We all know the chances of that happening. This site is a great place to Research and find some answers but who of us is pursuing outside the sites boundries? Who is willing to stand face to face with the enemy?
I'm ready are you??


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## Guest (Jun 24, 2007)

Would your charity by a registered one? Or are you just going to rake in the money for your own beer and drugs? I'm sorry to be blunt... but it's not like you're a well known member is it?


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## Guest (Jun 24, 2007)

Don't be shy D. :lol:


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## suz (Mar 26, 2007)

Emulated Puppet}eer said:


> Would your charity by a registered one? Or are you just going to rake in the money for your own beer and drugs? I'm sorry to be blunt... but it's not like you're a well known member is it?


Blunt :lol:

8)


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## Guest (Jun 24, 2007)

I already asked him on the first page... although he didn't reply. So I simply asked once again... although in a different manner in order to get a response...either way... as long as I?ve made other members aware that it "could" be a scam? it?s all good. I know it?s friendly to give people the benefit of the doubt but there are people out there taking advantage of people who seek cures.


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## suz (Mar 26, 2007)

Emulated Puppet}eer said:


> I already asked him on the first page... although he didn't reply. So I simply asked once again... although in a different manner in order to get a response...either way... as long as I?ve made other members aware that it "could" be a scam? it?s all good. I know it?s friendly to give people the benefit of the doubt but there are people out there taking advantage of people who seek cures.


Yeah, I saw : )

I'm easily taken for a ride; it'd take a lot more than donations from us lot to find a 'cure' though, hehe.


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## David Kozin (Jan 11, 2005)

The National Organization of Drug-Induced Disorders is a 501(c)(3) non-profit Public Charity (Tax-exempt and Tax-deductible).

With the donations we did receive, we have completed a study WITH DR. SIMEON for the purpose of awareness and Dr. Simeon advised that the manuscripts for the publications for the study some members of the HPPD community helped fund for you. I see our causes in a similar way. You can contact Dr. Simeon to validate our claim, she is a member of our advisory board of directors.

Although our site is not up (there are reason, too many to list here), we have the ability to work on this. We just need more DP individuals willing to be board members or work with us.

- David [email protected]


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## 17545 (Feb 14, 2007)

NODID said:


> The National Organization of Drug-Induced Disorders is a 501(c)(3) non-profit Public Charity (Tax-exempt and Tax-deductible).
> 
> With the donations we did receive, we have completed a study WITH DR. SIMEON for the purpose of awareness and Dr. Simeon advised that the manuscripts for the publications for the study some members of the HPPD community helped fund for you. I see our causes in a similar way. You can contact Dr. Simeon to validate our claim, she is a member of our advisory board of directors.
> 
> ...


That is amazing.
Let me know when I can help out next, because I'd be glad to donate relatively large sums of money to go toward things like this.


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## PPPP (Nov 26, 2006)

very good idea although not all of us have drug-induced DP/DR so it makes us feel a little left out. :lol:


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## David Kozin (Jan 11, 2005)

It really was not a drug-induced study, although the second component is a comparison, because we received so much data we looked at non-drug DP individuals as separate groups as well.

So, the first manuscript (which I have a copy) has nothing to do with drug-induced DP.

Honestly, as CEO of the company, I feel that Depersonalization Disorder is such a close cousin of HPPD's comorbid symptoms that we focus on this as well.

We are always accepting donations, and individuals interesting in donating and knowing how their money is spent, can e-mail me personally at [email protected]. You can research the IRS web site, and see that we any donations made to NODID are tax-exempt, as we are a recongized and regulated 501(c)(3) non-profit public charity.

For example, the study we conducted with the help of this web site was operated on a budget of approximately 2,000 dollars (mostly to software and articles research). Dr. Simeon and I donated all of our time, and she still donates her time. We will need money for submissions to some journals, as we want to get the most prestigious journal to publish our results.

Also, the dpselfhelp.com site is mentioned in the manuscript, so this will help legitimize this site, because it was sanctioned from the Grants and Contracts Office of the Mount Sinai School of Medicine.

I love this web site, because it is very active and in my belief the best Depersonalization web site on the net, and I always recommend it.

All my best,

David


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## bark (Nov 7, 2005)

David,
One Doctor doing research is not going to help entirely with this disorder. I'v been a member with DP/DR since 2004 and I haven't seen or heard enough positive outcomes from your charity. Not everyone here has a drug induced disorder so it cannot stop there. I think it's better to branch out instead of wishing or hoping one doctor finds a cure/Answer
We are not moving fast enough and I think it's time to expand a little. Many people on this site including myself want to see quicker results
so we can enjoy what's left of our lives. I do respect NODID but not enough is happening in the organization to warrent a stand alone charity.
If you think this is a scam maybe it would help ease your minds with one of our trusted executors of the site as the Auditor?


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## David Kozin (Jan 11, 2005)

Thank you, this is exactly what I have been hoping for for a very long time.

First, any concerned individuals that are concerned with why it takes so long to get our publications out can e-mail Dr. Simeon at: [email protected], (Just include in the subject line that you are looking to validate the research of NODID, otherwise the e-mail may not be responded to). Please do not use the e-mail to ask her questions about DP, because she is unable to answer them and you will receive a general response.

However, I would love the idea of putting a highly respected member of this board (if not multiple members) in positions as Directors for this web site.

I had to dissolve the structure for many reasons, we are starting fresh as a company. And, if we had individuals from this site with experience to join in meetings, and other aspects of what we do this would be very powerful.

Rembmer, the company consists essentially of myself, Dr. Roger Davis, Dr. Daphne Simeon, Dr. Halpern (although not yet used), our attorney, Rebecca Kozin, EA (an enrolled agent with the IRS for our treasurer), and I would appreciate any auditor, but more specifically a full position on our board of directors for the consideration of Depersonalization Disorder.

E-mail me at [email protected] to discuss.

- David


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## David Kozin (Jan 11, 2005)

To provide the neccessary advocacy that you are looking for, we would require a team dedicated to a complete redesign of:

Structural Goals as a company.
Operational Goals
Fund raising Goals.

Essentially, members who would be selected as Directors of the Board would have a significant voice in the development of the company.

- Dav


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## David Kozin (Jan 11, 2005)

sorry, this was a repeat.


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## David Kozin (Jan 11, 2005)

Essentially, I created the organization to provide awareness of the rare disorder HPPD. However, HPPD is much more complex then a visual disorder and DP/DR are very common comorbid symptoms that accompany the disorder.

The problem is this: The company is called the National Organization for Drug-Induced Disorders.

We can make a child company under our umbrella of the non-profit status, for example: [some name of a DP/DR research organization here]. That is not difficult.

Our problems resonate, as do our problems with the visual snow community. All of this can be discussed, however it is hard to discuss without members from each community to discuss the future of the company.

- David


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## suz (Mar 26, 2007)

I think this sounds like a wonderful idea, I'd be willing to help as much as possible. Although I'm not really sure what good I'd be.


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## David Kozin (Jan 11, 2005)

I will start negotations with a few individuals. So far, I have five individuals that have requested to be a part of NODID.

Although we have produced a few projects we will need to essentially reconstruct the company's personnel.

Anybody can do something, even if that is as simple as monitoring Wiki web sites for updated information, checking for spelling errors, or to a more advanced position of marketing with Google or perhaps designing research.

One member from this board, Brenna, is listed as a significant author on the Dr. Simeon research that we designed. Brenna and I had our hands dirty in the project and as a consequence, our names are listed higher then two of the doctors at Mount Sinai (Dr. Simeon is listed first for numerous reasons).

E-mail me at [email protected] and we can discuss the possibilities.

All my best,

David


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## PPPP (Nov 26, 2006)

suz said:


> I think this sounds like a wonderful idea, I'd be willing to help as much as possible. Although I'm not really sure what good I'd be.


ditto 
I can donate a couple of hours on the weekend to yall I'm sure 
but I don't know how helpful I'd be. I guess I'll e-mail you?

also having a sub-company for DP/DR sounds great.


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## suz (Mar 26, 2007)

Oh, I'd be the queen of typo checks!


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## Martinelv (Aug 10, 2004)

Bark - this is a scam. Admit it, or prove us otherwise. Give us some specifics.

If it is, as I suspect, a scam, then I hope you can sleep at night knowing that you are preying on the mentally ill for financial gain.

I just hope I'm wrong.


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## suz (Mar 26, 2007)

Yeah bark

*shakes fist whilst hiding behind Martin*

But new people; don't confuse bark with NODID, they're real.


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## David Kozin (Jan 11, 2005)

*To those of your who even suggest I am trying to scam anyone, please read below. All of my work is volunteer, and I have logged hundreds (and not on message boards, but research and programming).*

Here is an initial draft of the first publication for your viewing. I am taking it down relatively soon because I should not have it public for too long prior to publication by a journal:

CLICK BELOW FOR THE PDF VERSION OF A DRAFT OF ONE OF THE TWO MANUSCRIPTS:

http://www.nodid.org/presubmission.pdf

Enjoy my hundreds of hours of work working with the MSSM grants and contracts office, the programming, and all of this for not a penny to my name on a disorder I do not really even have except in the most mild form. *NODID has no budget, no money, we all do this as a volunteer basis.*

*Nobody, suggests our work is a scam -- this is one area I will be very angry about*. I have been on the HPPD message boards in 1998, and all I have done is pay for the HPPDonline.com web site mostly out of my own pocket. I have lost more money doing this then people can imagine.

I maybe taking what you are saying incorrectly and reading it wrong, and if so I apologize, but for anyone: Never doubt my sincerity and work, unless you are working to publish articles in literature or working in your way to get the word about your disorder in the community. I will never stand to be referred to as a scam artist when I work so many hours in addition to all of my regular school and job to help our communities. I do it, and not for one penny. Well, I did get a copy of SPSS statistical software for the computer that I use, but that we needed that for the factorial analysis.

- David


HERE IS THE INTIAL SUBMISSION TO THE GRANTS AND CONTACTS OFFICE FOR YOU VIEWING:

An Anonymous Internet Survey of Drug-Induced Depersonalization/ Derealization

Dr. Daphne Simeon, David Kozin, and Brenna Lerch

This study is designed to study drug-induced depersonalization and derealization. The study is being conducted by the Mount Sinai School of Medicine, Principal Investigator Dr. Daphne Simeon (GCO # 05-0792), in collaboration with the non-profit National Organization of Drug-Induced Disorders (http://www.NODID.org).

Abstract
Depersonalization disorder (DPD) is a dissociative disorder characterized by prominent depersonalization and often derealization, without clinical memory or identity alterations. Depersonalization is a particular type of dissociation that involves a disruption of subjective self-perceptions, manifested in symptoms such as feeling detached, robotic, out-of-body, or otherwise disconnected from one?s self. The disorder has an approximately 1:1 gender ratio with mean onset around 16 years of age. The course is typically chronic and often continuous. Mood, anxiety and personality disorders are often comorbid with DPD but none predict symptom severity. The most common proximal precipitants of the disorder are severe stress, depression, panic, and drug ingestion. In fact, in a notable minority of 20-30 % of individuals with DPD, chronic depersonalization lasting for months, years or decades is initially triggered by the use of illicit drugs, often sporadic or even one-time use. 
It is the goal of this survey, therefore, to descriptively and systematically study in greater depth the relationship between illicit drug use and depersonalization, as well as to compare characteristics of drug-induced depersonalization disorder to those of non-drug-induced depersonalization disorder.

Background and Significance
Drugs have been previously and consistently described as triggers of chronic depersonalization. In a case study of 164 individuals, 40 (24%) had developed chronic depersonalization either during or within 72 hours of drug ingestion (Medford et al. 2003). Twenty of the 40 individuals (50%) attributed the onset of their symptoms to cannabis, four (10%) to MDMA (ecstasy), two (5%) to LSD and one (2.5%) to ketamine. The remaining 13 (32.5%) attributed symptom onset to an episode involving the use of multiple drugs, with various combinations described. In another study of 117 DPD cases (Simeon et al. 2003), 25 participants (22%) attributed the onset of their symptoms to drug ingestion. Of this group, 15 (60%) attributed their symptoms to marijuana, 7 (28%) to hallucinogens, 2 to MDMA (8%) and 1 to ketamine (4%). 
The definite and frequent occurrence of drug-induced chronic depersonalization may be able to offer us unique insights into genetic and neurochemical vulnerabilities toward dissociation. For example, even occasional or one-time use of marijuana can trigger long-standing depersonalization, presumably in individuals with some underlying vulnerability, and can occur even in the absence of concurrent severe stress, other psychiatric symptoms such as panic attacks, or a traumatic ?bad trip.? Two broad explanations therefore might exist for such a phenomenon. One is that certain dissociation-susceptible individuals, drug ingestion may induce a profound alteration in self-state that is perceived as highly destabilizing, in effect traumatic, thus triggering a depersonalization reaction, non-specific to the chemical constitution of the drug itself. The other possibility is that certain drugs act as specific chemical triggers that ?tip over? already vulnerable dysregulated neurochemical systems that underlie chronic depersonalization. The two models need not be mutually exclusive and could have cumulative effects.

Research Design and Methods
This survey will be posted on the internet, and we expect to recruit 100-300 participants over a 4-month period. Only individuals over the age of 18 will be eligible to take part. To protect the privacy of the participants, the survey will not inquire about any identifying demographics, such as name, date of birth, address, or phone numbers, nor submission of e-mail addresses. Instead, an individual will be able to take part in the study by submitting a request to the website, shortly after which they will receive a password which will be activated in one day. Once 24 hours from the acceptance of the password have elapsed, participants will be able to enter the survey page, enter their password and begin the survey. Upon completion of the survey, each password will no longer be useable. 
The survey will be posted on http://www.NODID.org (National Organization for Drug-Induced Disorders), a non-profit organization providing information and resources on drug-induced conditions like HPPD and Depersonalization. The survey itself consists of several sections (see attached full copy). Initially, there is a brief explanation of the purpose of the survey, the fact that it is conducted through the Mount Sinai School of Medicine in collaboration with NODID, and that participation is strictly voluntary and anonymous. The first section contains demographical questions. The next section deals with the participants? history of depersonalization/ derealization, containing questions about age of onset and duration of symptoms. In addition, there are several questions that measure the severity of the symptoms, and their overall impact on individuals? lives. The third section is dedicated to the relationship between depersonalization/ derealization and drug use. First, there are specific questions about the temporal relation between drug ingestion and onset of depersonalization/ derealization. A complete list of illicit drugs is provided, from which participants can choose the ones they had ingested at the time of their depersonalization/ derealization, prior to the onset of the disorder, and during the course of the disorder. The fourth section deals with the participants? treatment history, questioning the types of therapy received, including various medications, and their degree of success. The next section includes the Cambridge Depersonalization Scale, which will be used to determine the severity of the participants? depersonalization/ derealization. In the final section, there will be space for the participants to describe how they discovered the survey, as well as any additional information relating to their drug use and depersonalization/ derealization.
Final data will be analyzed using descriptive statistics, as well as two-sample comparisons between the drug-induced and non-drug-induced groups.

References
Baker D, Hunter E, Lawrence E, et al: Depersonalisation disorder: clinical features of 204 cases. 
Br J Psychiatry 2003;182:428-433): 42-63
Keshaven MS, Lishman WA. Prolonged depersonalization following cannabis abuse. Br J Addict 
1986 Feb; 81(1): 140-2
Mathew RJ, Wilson WH, Chiu NY, et al. Regional cerebral blood flow and depersonalization after tetrahydrocannibol administration. Acta Psychiatr Scand 1999; 100: 67-75
Medford, N, Baker D, Hunter E, et al. Chronic depersonalization following illicit drug use: a controlled analysis of 40 cases. Addiction 2003; 98: 1731-1736
Phillips ML, Medford N, Senior C, et al. Depersonalization disorder: Thinking without feeling. 
Psychiatry Research: Neuroimaging 2001 Dec; 108 (3): 145-160
Simeon D, Knutelska M, Nelson D, Guralnik O: Feeling unreal: a depersonalization disorder 
update of 117 cases. J Clin Psychiatry 2003; 64: 990-997
Szymanski HV. Prolonged depersonalization after marijuana use. Am J Psychiatry
1981;138:231-33


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## David Kozin (Jan 11, 2005)

These are obviously parts of a scam...

Also, THANK YOU to the individuals who have e-mailed me to be volunteers. I will be getting to those e-mail as soon as I can. Thanks so much!!!

- David


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## David Kozin (Jan 11, 2005)

Oh, I think I misread the post. I am sorry about the anger, I didn't read the entire three pages and thought Martinelv was suggesting that I was trying to scam the community.

However, here is a great chance for you to take a brief look at the article. DO NOT PUBLISH IT ANYWHERE ON THE INTERNET OR I WILL HUNT YOU DOWN WITH OUR ATTORNEY ALONG WITH MOUNT SINAI FOR COPYRIGHT INFRINGEMENT. The PDF is Copyright (c) 2007 by NODID.

This is a small example of the work we have done with so little money (it mostly went to the very expensive software). Dr. Simeon and I work at no cost. However, if we could start a real fund raising drive we could get money to get people together to put a nice 2 page leaflet about DP/DR based on research and use it as a tool to provide to doctors so they can diagnosis you properly. There are so many opportunities, but with no money... all we can do is research.  Imagine if we had a budget!

- David


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## David Kozin (Jan 11, 2005)

I also want to mention the article above was just an offshoot that we decided to do and is not the main research. We just noticed how we could do a factor analysis to help define symptoms that can be considered for the next version of the DSM. Remember, Dr. Simeon co-chairs the group, so it is signficant for that reason alone.

It is not a "sexy" article at all, and this type of analysis is quite boring, but important nonetheless.

Sorry again for my anger. I though you hit a soft spot with me.

- David


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## suz (Mar 26, 2007)

Nope, it was bark he was questioning. 8)


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## userdp (Sep 2, 2005)

--------------------------------------------------------------------------------

J. wrote: 
crap. There is something wrong. It there was 1 pill that took it away. I would pay alot!

Not going to happen. Ever.

Why not, :? that is the thing that keeps me living. the hope of a medicine. For depression it is possible, for schizo to some extent so why not for dp/dr. Dr Simeon is also experimenting with chemicals and meds. There is a chemical imbalance in the brain. Only we have to find the chemicals to correct these


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## Anla (May 1, 2007)

I will be glad to help with an awareness effort.

Anla


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