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I am breaking my silence. Here is some to be revealed.


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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: 

 

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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

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It's a good concept, but converting stats into subscriptions is a very, very difficult thing to do, even if it would seem like our users could really benefit from making a payment and helping the cause. Some will have financial problems, some will dislike the idea of paying for information, some will look elsewhere etc etc.

 

I think an anonymous donations route is the preferable route. If we close even parts of the community to only paying members, it could cause a seperation and lead to the community dying down.

 

It's a tough one..

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I have no problem with paying membership. The community is pretty much running on fumes anyway. We are still reassuring people that they are not crazy or alone etc Either we just do that or do something pro active.. It would still be possible to keep the most of the relevent channels open.

When it comes to the movie project, I can be available when it comes to pro audio. I have 1000$s worth of equipment and a lot of knowledge (studied music for film) and could work close to the management, if it'll be a narrative documentary and/or consisted of interviews doesnt make a difference.

I also have some contacts in the top of the line neurology dept. in my country as well as the possibility to contact and exchange information with drug centers.

No problem with travelling for meet ups.

The problem is of course to do such things and still be able to make a living. My job takes a lot of time.

I will read up on the other post from David when im at a computer and not on the phone.

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The forum is always free. A membership will always be free, but it isn't free for me. I should not have to pay for the web site and for the tools and the stress and see people decide they do not put value in the work and would not spend $5 dollars a month towards a research fund and basic operation. Everything would be transparent. We all work for free on here and I spent years working for free. I actually am broke, and have 180,000 dollars in medical bills at the moment. I can't get a job because people do not hire someone that when they search Google end up with 1000s of hits related to drugs, even if good info, it still shows that I am too complicated for the position. I know this because they tell me. 

 

So, a free membership will exist. A student priced, but equal to basic membersip will be available and have the same benefits. Why would someone who pays get more benefits than those who do not? Because if someone has a computer with internet access, and can buy a pack of cigarettes or a beer or buys 4 itunes songs then I am assuming if we offer even a payment plan for the membership where someone without a credit or debit card or bank account could send a few dollars in the mail when ever it was possible or willing to volunteer for a job on the site that is annoying (like you removing spam) then that would be cool.

 

I see the statistics. It is not so much about us donating, as people willing to sign up and tell their stories and be part of movie so we create a narrative that is compelling. The gentleman who got beaten to near death in Detroit has received almost 200,000 in donations from people for his medical bills in just four days of it being announced.

 

We need to create a compelling case, and I am sure we can raise the funds. I just need the membership basis and having doctors pay for listings or using Amazon.com affiliate links/etc can raise money with the amount of traffic we receive.

 

We are just 2 hours of time (by each person) away from really having something extremely valuable.

 

Also Jay, I will contact my friend Ali Toukan about some funding for film. He can independently fund projects and is Headquarted in Dubai. 

 

- dk

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I am ready and willing to do whatever or be a part of whatever. I can't help but feel that people aren't being vocal enough about their opinions on this seemingly dramatic proposal. As it will inevitably affect all of us. 

 

I wish more people seemed willing to take the next steps. 

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  • 3 months later...

i will think about that and hope all people from that page support it,

 

can anyone put this post in a place where people can see??????

 

edit;

 

people come to this forum for information and to talk about his disorder, and this is very well and is very normal, 

 
but 
 
the creator of this forum, david, is absolutely right. people, if not for David Kozin, the vast majority here would be eating ice cream, watching movies without understanding the headlines, crying not knowing what happens, and that is demonstrated in cases of people who have lived their entire lives without knowing a diagnosis. 
 
mourn, feel good with other people who share a disorder and discuss the best possible medication is a good idea, but support the guy who makes this all possible, and to find a cure for us, or for those coming then, is an idea far better 
 
we have to rethink this idea and carry it out, that the forum will remain, but will not serve any good if we do not serve to help ourselves, 
 
a greeting.
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Fuck the free shit.
David, I've thrown whatever money I could to you over the past because I've always believed in you and this decision to push things truly signifies a shift in the way you will lead us and change the dialogue surrounding HPPD. You do what you always do by giving us hope. You got my money and nobody on this board has any excuses not to scrounge twenty bucks to pitch in. You can afford the internet somehow then you can support David's work. This is great news David. Balls to the wall!

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Fuck the free shit.

 

Yea, fuck anyone with hppd who can't afford to pay for a subscription.

 

You realise there are 15 year old kids coming on here, desperate for help? $20 is no small change to a teenager.

 

I'm all for making a much more visible donations section, or planning fund raising events, or funding a documentary.... But the minute we think about charging for information... I'm out of here.

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Give it rest Jay.
I can't speak for David but knowing him there will be portions of the new project that will be accessible but putting that aside, this group has had nobody except David, Dr. Abraham and a few others who have dedicated time and resources to investigate HPPD and quite frankly, I believe they, THEY, should be renumerated in kind. Patient Advocacy is how diseases under the radar get noteriety which leads to grants and from grants to research. I don't know about your parents but if there was a group actively engaged in raising money to undo the damage we've done, they'd donate money to help. You see, one of the worst things in the world a person suffering has is hopelessness. Likewise the worst thing that a caregiver can endure is powerlessness. Powerlessness to help while the person they love is suffering. This new chapter in David's work, his career, his life deserves our full support. This is the kind of work that creates shifts in disease states. It has done so historically with other conditions so it stands to reason it will do so with ours. Getting Orphan Disease status can get un in the door with NIH funding for christ sake. Hey 15 yr olds, if you can't steal $20 from your dad's suit jacket you're a loser. :-) Been there done that and while I joke about the stealing bit, having an open and honest conversation about HPPD with your folks is just about the best thing you can do on your road to healing. They are there to help you and what better way to show support by making a teeny weeny donation to the one guy, THE ONE GUY among all of us who took it to the next level. You know what Jay, you've got a wife, a career, and live in one of the top 20 countries in the world but guess what. My divorced, broke, HPPD ass that has a son with learning disabilties is going to pay your $20. Consider it a gift man. Do what you gotta do David. If you lay out a plan that puts this disease on researcher's radars, maybe we could start seeing some real momentum in defeating this ugly beast known as HPPD. 

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Give it a rest? GIVE IT A FUCKING REST?????

 

You come on here every 6 months and whine about money then disappear again.

 

Some of us are here giving hope to newcomers every fucking day without any thought or concern about money, or the time it eats into our paid jobs. Do you answer dozens of PMs a week? Do you go to great lengths to help ANYONE out? If you stuck around more, you would know that around 80% of our visitors seem to get better... There is plenty of hope and alot of it comes from finding other people with hppd and getting advice and info, quickly, for free. Some don't even need to sign up. The answers are there for them in pinned threads.

 

If the site offers stuff via subscription, it will alienate people and will raise next to nothing.

 

I work in the web industry at the very top level, I've worked with locks of love, and several other charities... I know this shit inside out, for niche areas SUBSCRIPTIONS DO NOT WORK

 

Donations, fund raisers, documentaries, leaflets etc.... That is how this kind of thing works. And thankfully, this is something that anyone can participate in... Whether they want to donate money, raise money, or... If they don't have money, can try to get the word out or try to help newcomers.

 

Give it a rest? No, i'll keep doing what I can on a daily basis.

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You know what Jay, you've got a wife, a career, and live in one of the top 20 countries in the world but guess what. My divorced, broke, HPPD ass that has a son with learning disabilties is going to pay your $20. Consider it a gift man.

 

That's possibly one of the shittiest, most spiteful things i've ever read on here.. You know absolutely nothing about me.

 

I'll tell you one key thing about myself though.

 

and it is, deep down, the sole difference between me and you... I fight for my happiness, I fight for my life... I don't sit around crying about the hand life threw at me, and trust me, i have been dealt some bad cards and heartache over my life that would make you fucking ashamed about your above post.

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David, I really appreciate all of the work you've put into this and I'm extremely thankful this forum exists.  I'm also 100% on board with updating the community and implementing some kind of revenue-generating system.  This forum is extremely helpful, but I sometimes feel like I'm trapped in the previous decade, technologically-speaking.  It would be great to update the community to 2014 standards.  

 

I can also see where Jay is coming from in that this model may be a little idealistic.  It seems like you've done a ton of research and I respect that, but at the end of the day, even guru economists have a difficult time predicting future transaction trends based off analytics interpretation with complete accuracy.  I'm not saying it's impossible to raise money, just that it may not be a simple analytic conversion.  Still, I think it's worth a shot.

 

I also agree with Jay in terms of keeping information freely available to the public.  This community has generated a pretty good database that has definitely helped me during some rough times and I wouldn't feel right charging for access to basic information.  That being said, if I'm understanding your proposal correctly, it seems like the idea would be free access to basic site functionality including but not limited to the information database, then the "advanced features" so-to-speak such as text notifications and discounts for seminars would be part of a subscription service.  I support this as long as we're not restricting basic information/support from anyone.  

 

Just throwing out ideas here, but have you considered making the forum, itself free but implementing some kind of paid app with push notifications and mobile access to online user profiles?  Full resources/functionality would be free from the site, itself, but you could pay for mobile access with some useful tools for accessing the resources.  Not sure how that fits in with your analytics research.  Just spitballing here.

 

Regardless, let me know how I can help out with this.  I'll be happy to donate to the project as soon as we determine what direction to take. 

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Wow Jay, 
I suppose when you decide to let it all out you certainly don't hold back.
Well let me tell you something, neither do I but I don't have the luxury of using explitives like you because you're an admin and at the wink of any eye can easily erase my post so I'll keep it PG13 and relatively simple for you to understand.

I've been on the various manifestations of the HPPD websphere for the past 17 years and in that time, I've gone by three different screen names. Three names for three phases. 
1. My inception into HPPD and the hell that came with it.

-This lasted several years where I was in the discovery phase, inundated with fear and panic 24/7.
2.The stage where I healed and offered my time to assist others in the community for a span of years.
3.My relapse due to a chronic pain condition which may or may not be HPPD related. HPPD is hard to live with and the coping mechanisms developed take time and demand consistency. In a chronic pain state, the ability to maintain focus and mental strength is damn near impossible and so my cormorbid condion unwound my professional career, my marriage and derailed whatever life I made for my safe after having, to a relative degree, conqured HPPD.

Now I understand your reservations behind a subscription based HPPD website but David made it pretty clear that the entire site would not be inaccessible to non paid visitors but to be frank, I wholeheartedly endorse a paid site for several reasons.
1.We need to be our own advocates and generate funding for research and awareness.
2.David has made a substantial investment in time and resources in his education, research and accomplishments and I can tell you now that what he's accomplished in the past 17 years (both he and I contracted this condition within months of one another) nobody and I mean nobody has attempted to climb the mountain that he has. The guy can barely afford to maintain the website for christ sake so your free argument goes out the damn window once our caretaker runs out of money. I personally feel that people who immerse themselves selflessly into a seemingly hopeless cause and give people some semblance of hope should be renumerated and in kind inspired to do more work. Your opinion has merit but in the past 17 years, so much more could have been accomplished if there were fundraising efforts and in that vein you mean to tell me you're some fundraising guru that knows all about this stuff? Let me ask you, have you held a charitable event for HPPD in all this time? Not to put you on the spot but if you're going to talk tough I expect you to put your money where your mouth is and my gut feeling is that apart from being a moderator, you haven't done dick to further the cause. I hope I'm wrong but I'm quite sure I'm not so before you take a dump on my face for being somewhat prickish take a good look at your life and try to imagine what could have been accomplished if David was supported by us, our friends and family (for starters) that do believe that there is hope and help on the horizon. I'm not ok with being in limbo and as much as I pride myself for not taking meds as not all my days are terrible, the days that are can be ruthless. I hate living this way as I'm sure you miss your pre-hppd days too. You say it won't work because this approach has failed in different models? Well, I've seen it succeed. Having been diagnosed with chronic prostatitis, chronic epiditimytis, orchitis, pinched nerves in my low back, low grade varicoceles and just about anything and everything that can illicit pain the groin, the kind of pain similiar to child birth, I can tell you right now there are subscription boards that do charge $20 per year whose sufferers gladly pay and the information on those boards are priceless. I learned about trigger points, myofascial pain and over the course of years took my suicidal pain down to tolerable levels then soon to non existent levels. Some days I have pain down my right leg probably due to the sciatica from my bad discs but again, these support groups saved my life and I had no problem kicking in a few bucks for the cause. I'm sorry if I came across like a dick but as great a guy as I can be I can also be a mean, vile son of a bitch especially when I see someone getting in the way of a good thing to help the rest of us so if you need to kick and scream, call me names, hell I don't care, been tortured for more than a decade in a half so please don't be offended but I couldn't give a damn buddy. My concern is David, his welfare and his work because without him, his education, his connections, his mind and published work, we'd all be screwed. It's time to take things to the next level and you need to decide on whether you're in our out. You'd be missed if you go but we'll survive nontheless.

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You won't ever be banned by me.... I have stated many times that I am only an admin to stop spam. I am too blunt to be a proper admin.

 

I'm too tired to carry on with this negativity. So I apologise for any bad will and will keep my opinion to myself unless David asks for input. 

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  • 1 year later...

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