David S. Kozin

A large new site that will be adjunt to this and does much more for the projects is under construction but also working. If anyone is interested in paying for a membership, which is not tax deductable but at this point nothing is, that would last for a year of full access as a "Founding Member" which would be carried as a status for the operation of our group company. 

We have pledge drives, fundraisers with tickets, donation by text message, online sales and other ways to get funds. I have layed out the basic purpose of the funds, but it will be held in an account at the moment (until this month runs out of hosting.) 

The best step is to join and provide your real information and this is going to be hidden and we will have usernames listed along with the others. However, with real address information the system can effectively help you with local events/etc. 

Text RECRUIT to +17474002617 to join or Text RECRUIT to+17349842496 to join

Then goto http://www.kozinfoundation.org/membership for the basic membership plans that are far from being fleshed out, but it will be equitable at the end.

Or goto: https://hppd.nationbuilder.com/donate to provide any amount.

As far as where the money goes... I can say that the research I did under "NODID" for DP/DR os stated as 0.00 funding provided and a huge undertaking at no cost. The original diagnostic criteria for Depersonalization Disorder did not include options for Derealization and only had one symptom, we used an instrument to show that specific patterns exist that form the other symptom groups. Now it is a dimensional and multiple diagnostic questions to undergo.

The system I am using we use with political candidates and the system is protected for obvious reasons. 

- David

Recently, I had a very severe injury to my leg resulting in total absence from social media or work for a long time. Afterwards, I had to take what small positions I could to stay afloat.

I have decided to make a commitment, for about as much time as it would take me to find some work, to make the new HPPD Initiative and Research plans my work.

Dr. Abraham has conducted the majority, if not all, of his research regarding HPPD without any funding. They spawned off of other work where essentially the insurance companies are paying for the tests and he is reading the results. However, he does invest his own time and money and really deserves a lot of respect. Without him, I am sure HPPD would not exist in the DSM-5, and you would all be on the visual snow board where prejudice for your drug use would be a cause of fights and we may still be a myth.

PROBLEM 1: The problem is that we do not have any EPIDEMIOLOGICAL DATA to present the groups that make decisions about grants. 

WHY?: Without data on how many people actually have HPPD, we can neither apply for special grants for very rare (orphan diseases) nor can we show that the problem is much bigger than they think. We need point prevalence data. I have designed the new system that involves a membership system serves as a good indicator for an individual to really belong in the HPPD population. If a $20 dollar a year membership was required to access all of the web site's features and money that pays for printed literature/etc (just hypothetical number) was paid by 10,000 people -- this is the number of people that I can guarantee by studying analytics from Google and server tracking -- many who do not register but visit regularly paid 20 dollars a year we would have 200,000 dollars for research, web site, expenses, etc. Wow, that is a lot. But it can be done.

Now, each registered member is verified as a person with an address and name. I can have each complete my comprehensive survey about HPPD, which Dr. Abraham approved after some fixes. Now, I have maybe 7,000 people who took the survey from all around the world. Now, we have a major paper and would warrant larger research because misdiagnosis of false negatives can be shown to be common and a number of people with HPPD could be predicted from the error rate of diagnosis. 

Do you want to get research organized? Then we must organize as a unit, create the petitions and connect with the institutions and act as a lobbying group essentially for our disorder. 

This is a model that works, and the research I suggested Dr. Simeon and I work on ended up showing a population of 360+ people stating to have DP/DR took an important test and the results from the internet group were ALMOST exactly on the numbers of people who take it in person after a diagnosis. This was huge, as it validated our large sample for other reasons. It was the nail in the coffin for changing that diagnosis and to this day my proudest work. 

I am going to continue to work on the basic set-up of the new web site and accept people willing to craft it and how the entity works. 

So, this is what a membership could get a person at the "Regular [Full] Member" 

1) User profile that can be public or hidden

2) A blog to tell their story as they chose

3) Access to all of the literature in a virtual library, access to online systems that the memberships could pay for.

4) Set-up text or e-mail message reminders if someone is setting up a meet-up within X kilometers from your home.

5) Receive text message if a doctor near your area has taken the pledge that HPPD is a disorder of the brain, has committed to reading the literature and as a result signs their virtual name to the web site and their office location is placed on the map. The system will look for people within a radius and alert them about the doctor.

6) Access to all of  the authors stories, ability to comment, create your own meet-ups

7) Organize events, participate in seminars and receive discounts we use our size to procure.

8) Receive alerts to nearby research and contact information.

Additionally, it would carry over and pay for this web site and then the work done for the printed material for all members and for the professional information web site.

Is that worth the cost of a cheap American fast food combo meal once a month? If so, then it is worth $60 USD. If 5,000 members paid $60 we would have 300,000 dollars a year. We would have researchers drooling for that type of money if it was guaranteed.

It is so simple for us to really take this and do it if everyone realizes how a small contribution, set up regularly and with many volunteers working and targeting the rights areas to request for grant providing money. Essentially, we all would be paying a premium on services to pay for grants to researchers and in that WE ALL OWN AND SHOULD TAKE VALUE IN THE RESEARCH. It is a co-op that hires a research team. 

If we have 100,000 dollars I am almost certain the donor group from the HPPD Foundation will feel this is a measure that it is worth it for them to make the financial contribution of an equal amount towards research and double the money. 

How close are we? As close as the desire of the people who decide what they value. Do you value that type of money that would allow us to have researchers begging for us or where we are begging to them because we all said we can not give up one hamburger and fries a month. 

Here are the site statistics, we have the ability to harness this power: 

Analytics www.hppdonline.com Acquisition Overview 20140101-20140410.pdf

Analytics www.hppdonline.com Audience Overview 20140101-20140228 (1).pdf

Analytics www.hppdonline.com Location 20140101-20140410 (1).pdf

https___www.invisionpower.com_clients_index.pdf

Funding. Dr. Abraham did his research without funding (in most if not entirely, or attached it along with a different project). I have two research ideas, but require funding and expensive at probably $150,000/yr for two years. 

I plan on a very simple and reasonable way to raise this money, and I hope the community takes advantage of it. Otherwise, money will never go to HPPD because money is limited and frankly they are close to eliminating it from the DSM and we have to push it down their throats. Dr. Abraham saved this entire disorder from elimination in the research area. Dr. Abraham and I worked on research ready to run, but need a little push with money. I can't eat, I need regular job. Instead, I am trying to push forward for a little bit with HPPD and see how it goes. Before I earned my bachelors degree I published four research studies with hard work and luck and changed the DP/DR diagnosis and my work has been cited over 80 times in a few years and it is growing. 

We can do this, but only if the community can put a value on research or if they are going to waste that same amount of money on a bottle of supplements that someone tells you will help but will not. I will actually write the post about this tonight.

- David

I'll provide an update on this unless someone else has one?

http://nbuild.s3.amazonaws.com/pdfs/nationbuilder-feature-tour.pdf

File Name: HPPD INITIATIVE MANAGEMENT SYSTEM

File Submitter: David S. Kozin

File Submitted: 09 Apr 2014

File Category: Publications

http://nbuild.s3.amazonaws.com/pdfs/nationbuilder-feature-tour.pdf

The HPPD System for Building this initiative.

Click here to download this file

For example, I would love an assistant to help fix spelling errors and grammar problems in the post above and also process incoming messages/etc for the project. I am reaching out to multiple connections in the industry about putting in support, and I have learned that even doing this full-time this is not something I can or would want to try alone. I want everyone to take the credit, but let me survive without going hungry.  

- dk

RESEARCH & ADVOCACY AWARENESS INITIATIVE

We are in an unprecedented moment in the timeline for Hallucinogen Persisting Perception Disorder, and the most important components to move us forward exist within our own ranks.

The current active members of HPPDonline.com are by far the most vocal about their condition without concern for the backlash, are also part of medical research and some are open about their HPPD. We also possess funds to collectively have no trouble with $200,000/year research budget to HPPD and include artist and writers who can communicate the message to others.

I read how many members on this web site want to take a next step, and today is the day it is going to happen. I am starting talks to the responsible parties of the HPPD Foundation. The Foundation's goal is to put $100,000 funding towards HPPD research a year, and I think this money would be served best to help the members of this community with their project ideas including:

(These are ideas from the forum, chatting with peope and my own but collectively as "ours" no way suggest or want ownership, just putting them out there)

1) Creating an HPPD Documentary Movie / Raising the funds to do so / Organizing people around the world for film

2) Developing a non-forum web site for professionals about Hallucinogen Persisting Perception Disorder. Allow everyone to blog on a membership site.

3) Creation of high-quality documents -- informational hand-outs, public relations and awareness literature

4) Conducting research at school, uni or in their office or online.

5) Create a database of doctors that have taken an "HPPD" Pledge, where they have read a minimal amount of HPPD and agreed to the legitimacy of the disorder and in turn get their office contact information in a searchable database

6) Have an organized system for meet-ups with HPPD people in different regions

7) Organizing effective grass-root awareness campaigns at targeted events. Other PR at target audiences.

8) Public Speaking about the Topic at conferences

9) Holding our own International Conference

10) Dealing with the media and responding to false information on the Internet

11) Creating art, publishing text and getting publicity for the work related to HPPD. This includes digital media as art and simulations.

12) Create a group that can find unique and non-traditional methods to ensure our goals and desires are met

13) Pay for media space in traditional outlets, while using SEO and clever methods to occupy more digital space.

14) Organize for placement on television shows with huge audiences (Dr. Oz, The Doctors)

15) Collect all relevant Research from the past to current and place it in a space for use by us, other researchers and clinical workers.

16) Conduct fundraising programs to further fund these operations

17) To leverage all of our own unique skill sets, positions in our lives and organize our talents to reduce cost and barriers to getting shit down. This includes translators for the main web site, documents that go to print and in-house graphic designers (we have some of the best) invest some time and with funding -- get paid vs. non-HPPD designers -- for work.

18) Help me with two research projects I have ready to begin and I have authored two Visual Neuroscience & Information Processing protocols that were discussed by Dr. Abraham and labs at Yale to UC:SF for finding a biomarker of HPPD and also enhancing our understanding of the neurochemical pathways that are involved with HPPD to further improve targets for pharmacological therapies.

19) Provide support to individuals as an organized group with one person always available via a hotline organized and operated with volunteers.

20 Become a model group for what can happen when the patients work collectively to change the way their disorder is understood, diagnosed, researched and treated. Become our own champions for the future,

To do this, we need to work as a team and individuals with the ability to give more time & higher skill sets of different projects take leadership roles, but still work as a team.

I AM DEDICATING FULL-TIME TO THIS.

So, along with advice from others and now having the opportunity to do so, I am giving up hope for earning money to get me to the next step of my life and focus 8 hours of the day to the project and hopefully in 6 months we are moving forward at an excellent pace and I can afford to return to school for my advanced degree while working on this grand project.

i have the first step for the organizing of all of the interested people on this site and more to become an effective autonomous and self-running organization that is essentially the computer system and design of Obama's political online campaign machine. I have used it for local political campaigns, and working with the company to get certified (to put me in a group of 10 people perhaps) as an Expert in their new system that just received massive funding and the founder of E-bay jumping on board. The system is being used for the large anti-bullying campaign to entire state's Party unified campaign software to non-profits and running local governments. 

I have the system set-up with the basics, but this is all that is needed to start. Two of our members donated the money to pay for the start-up of the system (very inexpensive and highly scalable) and to take all of these great ideas from the community and make them actionable we can start with the individuals who will become "early adopters" and work to discuss management issues and the best structure for the group as an entity (legally/etc) and generate the basics for the majority of the community to become a part of.

I am clocking in all day this week and beyond for what yesterday was temporarily named the Kozin Foundation until the geniuses on here can come up with a succinct name that conveys the message and has a domain name we can get. However, I do have phone lines already set-up for the company. 

If you are interested to become a project leader or provide early work as a designer, programmer, researcher, attorney, funder or whatever you have thought of like a social media butterfly: You can contact me and we will organize communication if you do one of the following:

1) Text RECRUIT to +17474002617 to be part of the start-up. The system will record your cell number, and then ask you for your e-mail address and your name. This is recorded and will be viewable to core staff members. With this information, an account for you will be created but not public with this very basic information. I will be notified immediately to follow up and fill in the rest of the details and discuss what you would like to do. 

2) Send an email (this will change when the domain name changes after input, but at this time is david@kozinfoundation.org). Include your contact information so I can follow up with you. I will also be alerted to take care of this.

3) Call and leave a voicemail at +17474002617 with your contact information. If I am not on the phone, I will pick up during normal hours.

- David

Do you want to work on organizing people who could be useful to this process as an early adopter and test of the new system. I will include my contact list and other individuals in the industry to put together a plan? 

A friend of mine, who is waiting for a clear and organized project is Ali Toukan, Director of Development at Phoenix Pictures. He also funds films independently. 

If you are not familiar with Phoenix Picturtes: 

Phoenix Pictures is one of the premiere entertainment labels in the film business, bringing quality films to audiences around the world. Led by Mike Medavoy and Arnie Messer, two of the industry’s most respected senior executives, Phoenix has established a reputation for consistently developing first-rate projects with some of Hollywood’s top creative talent.

With over 25 feature films to its credit, the company has collaborated with sought after director talents such as Martin Scorsese, David Fincher, Darren Aronofsky, Oliver Stone, Milos Forman, Andy Davis, Bryan Singer and Terrence Malick, as well as some of the industry’s biggest stars, including Leonardo DiCaprio, Robert Downey Jr., Sean Penn, Arnold Schwarzenegger, John Travolta, Ben Kingsley, Kate Winslet, John Cusack, Jude Law, Renee Zellwegger, Kirsten Dunst, Michelle Williams, Edward Norton, Samuel L. Jackson, Robin Williams, Shia LaBeouf, Jake Gyllenhaal, Ewan McGregor, Mark Ruffalo, Sigourney Weaver, Jennifer Lopez, Anthony Hopkins, Jamie Foxx, Eva Mendes, Adrien Brody, Woody Harrelson, Nick Nolte, Ian McKellen, Barbra Streisand and Jeff Bridges.

The company was formed in 1995 by Mike Medavoy and Arnie Messer, with partners including Sony Pictures Entertainment, Onex, Fremantle Media and Showtime. Phoenix ’s first three films were The Mirror Has Two Faces, directed by Barbra Streisand, two-time Oscar® winner Milos Forman’s widely acclaimed The People vs. Larry Flynt and Oliver Stone’s U-Turn. In 1997 legendary filmmaker Terrence Malick returned to filmmaking after 19 years with The Thin Red Linefor Phoenix Pictures, which went on to receive seven Oscar® nominations: Best Picture, Director, Screenplay based on material previously published, Cinematography, Editing, Score and Sound. That same year, Phoenix produced Urban Legend, which was the fifth top-grossing film released by Columbia/TriStar in 1998.

Phoenix has also produced Dick, Lake Placid, directed by Steve Miner, Whatever It Takes, directed by David Raynr, Mad About Mambo, the sequel Urban Legends: Final Cut, directed by John Ottman,  Roger Spottiswoode’s The 6th Day starring Arnold Schwarzenegger, Basic, directed by John McTiernan; Holes, based on the award-winning New York Times best selling children’s novel, directed by Andy Davis; In My Country, Stealth, directed by Rob Cohen, and All the King’s Men, directed by Steve Zaillian. In 2007 came the independently financed Miss Potter, directed by Chris Noonan, Pathfinder, directed by Marcus Nispel, Resurrecting the Champ, directed by Rod Lurie, License to Wed, directed by Ken Kwapis and the critically acclaimed Zodiac, by David Fincher.

Shutter Island, directed by Martin Scorsese and starring Leonardo DiCaprio, Mark Ruffalo, Ben Kingsley and Michelle Williams, will be in theaters in February 2010. Phoenix is currently completing Shanghai for The Weinstein Company, directed by Mikael Hafstrom, starring John Cusack and Gong Li, and will soon be starting on Darren Aronofsky’s Black Swan, starring Natalie Portman, Winona Ryder and Mila Kunis. Other feature films in development include a remake ofRoboCop for MGM, and an adaptation of John Grisham’s best-selling novel Playing for Pizza.

I spent days house sitting for Rick Doblin of MAPS. I know their opinion, and they have their opportunity. The best news coming from that area is from Dr. Charlie Grob announcing, for the first time, that HPPD is real and they better deal with it. Grob is very influential, but I spent a year with MAPS folk and they are raising money for other areas. Your logic is correct, and people in MAPS I know state, "It should be a priority to study HPPD to reduce risk and understand possible harms to reduce them." 

However, despite being there... it is not the place I want to have you put your HPPD money in. 

However, you can join and work to put together a group for identifying and communicating with the HPPD Foundation and restart their interest.

I'm here all day.

- David

http://hppd.nationbuilder.com/volunteer_phase1

Text RECRUIT to +17349842496 to join

The forum can only do so much. 

I realize the limitations, and I have read excellent ideas on taking the next step for HPPD.

I am suggesting and set-up the basic components to begin a system that will allow a sampling of the following types of actions:

Members to the new site can register with e-mail address, Twitter or Facebook account. You can create a public profile if you choose. Your account is connected to what you do, you earn action points by any positive awareness work and other variables. Each person becomes part of the team, and different team members from here will be in charge of groups to organize actions:

Here is the capability:

People

Your NationBuilder database puts people at the center of everything you do.

• Dynamic profiles — Effortlessly capture people’s contact information, automatically match email addresses to Facebook and Twitter, and find your most influential supporters with Klout.
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testing Bose Radio

VALIDATION SETTINGS CURRENTLY EMAIL MY OLD ACCOUNT (WHICH IS NOW BEING REVIEWED) FOR ALL ACCOUNTS THAT WERE BLOCKED FOR NUMEROUS REASONS. SOME ARE BLOCKED ON ERROR.

I HAVE 3,555 MESSAGES TO GO THROUGH. 99.9% ARE LEGITIMATE BLOCKS.

HOW THE SYSTEM WORKS:

Online Databases contain information on known IP addresses, email addresses and other variables that are reported by forums (including ours) when a user is marked as spam. I get a report like this:

Registration BlockA user has been blocked from registering. Details regarding the registration attempt have been provided below.
Username: Tabbesealketa1
IP Address: 5.254.144.200
Email Address: hallal659@rondecuir.us

Username Records: 0 (StopForumSpam)
IP Records: 1220 (StopForumSpam)
Email Records: 255 (StopForumSpam)
Threat Level: n/a (ProjectHoneyPot)
For more information regarding the history of this user, visit the following websites.
Lookup Username on StopForumSpam
Lookup IP Address on StopForumSpam
Lookup Email Address on StopForumSpam
Lookup IP Address on ProjectHoneyPot
Report provided by Stop Spammer Registration for IP.Board

As you can see, this user has 255 records for that email address reported as SPAM and 1220 for that IP address. So, the odds are very strong that it is a spammer. However, sometimes I will see a user with only a few IP records as the only reason for blocking, which is a potential real user because IPs are dynamically assigned (in many cases) so a user logged in with one that was marked as bad. These need reviewing.. It will take some time.

- David

I am working on a site with a different content magagement system and that would be entirely doable. 

Just to be clear, when I stated I was going to send an e-mail blast I was suggesting a mass e-mail to all members advising them of the opportunity.

Nobody has been motivated to work with HPPD expecting to get money (Not many HPPD books out there for a reason). Dr. Abraham's research, if you look carefully at the publications, did not involve major grants and often done without funding. 

I am glad to see such a family effort in the project and my guess is participation has been low because of lack of visibility. I hope to change this. 

Cheers!

David

I am going to blast e-mail this later this evening.

Good question. Just to let other's know: I am very privacy conscious, and the chat room does not have a log lasting longer than an hour (I'll get the exact amount, but it may even be 50 lines) and even I do not have access to it because I have it set to delete.  

The Chat Rooms on other similar sites usually are full of trolls and have nothing good to say. I think if someone saw another person in it, it would be active. However, many are very privacy conscious and more than half the regular reading members are not even registered. 

- David

I have had thoughts on doing it... I have 500 pages written on the topic I could put it together. I will put up my piece for the Psychologist and see where that goes for using a good text for wikipedia format.

When I saw the topic of the post, my first thought was to mention Gabapentin as one pharmacological drug for sleep. 

I have my leg shaved from a skin graft and last night I could not sleep one minute -- I did not have my refill and there is a withdrawal. 

I am on 600mg three times daily. The first few days will give you a euphoric high and general sense of well being. This is a good reason they are finally investigating it for antidepressant use, 

It is both activating & calming at the same time. It is hard to describe, but I would say that I get more benefit in long term from gabapentin than I do/did clonazepam.

A gentleman from an insomnia group just followed me on twitter and posted about gabapentin, There are a lot of good things going for it: Not metabolized in your liver, no lethal dose possible without using the pill as a bullet and it is now generic and $15 for 90x600mg at a private pharmacy is the going rate. 

Also, 100mg can be very effective as well. Gabapentin can give a sense of mania without purpose and you will clean or do projects, but generally this is not a bad thing. 

I think gabapentin is superior to Lyrica ($355.00 for a month) for price and efficacy.

Adding Spam Moderators (Humans) with demonstrated trust based on votes and ranking of posts from fellow members with ability to delete spam.

- dk

E-mail the photo to davidkozin@me.com. There is an art to making sure the photo is within both a physical dimensions and a file size & type restriction. 

Thanks!

David

I noticed this was locked from general view, so I opened it up to the public. 

Jay, 

I have upgraded permissions. Check your account with the Admin panel and review updates. New access to a Warnings Module. I have to fix the other Admin/Mods (even fix my own account). 

- dk