David S. Kozin
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Posts posted by David S. Kozin
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NODID.org is now back in my hands. It means very little in the big picture, but a small celebration.
I registered NODID.ORG when we formed the National Organization for Drug-induced Disorders, Inc., a 501(c)(3) non-profit public charity.
I lost the domain name, which suddenly jumped to $600 and was owned by various other groups. NODID, the organization is no longer active, but I have accounts that use dkozin@nodid.org as an e-mail back-up that should allow me to enter places to enter other sites.Admins: E-mail david.s.kozin@gmail.com with any financial issues and current SITREP. I contacted some of the larger sites to fix their links, which explains some drain on the the site, and I may have a donor that will pay for hosting.
I am having a significant family issue that may result in a slow response, but much more quickly than never.
If you are interested in learning about the history of the hppdonline.com web site, you can go to wayback machine and look at nodid.org and hppdonline.com and see what I was working on at different stages and can get some interesting information.
Here are images from the history of HPPDonline and one from NODID. The oldest record in 1991.
- David
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I remember feeling so protective about the HPPD community (I was married to one) that if someone pointed out ignorant comments referring to us as malingers and faking the symptoms for different reasons. My favorite were provided on a few occasions when people claimed that Dr. Abraham and DEA created HPPD as a lie and eventually I knew I was doing something right too when I was named as a co-conspirator. Usually, it was a pretty rational person selectively processing facts and emotions and they are very hard to discredit because they feel they would be aware of this disorder if it existed. I argued with a professor from Germany who read almost all of the material on LSD that one would ever need to, and for years on the Internet in email, he would only give me credit for being so open to alternative explanations. I later met the researcher who still would not believe me 100%, but he said that my willingness to identify alternatives but state something you can't deny: "Well, we have web stats that prove at least there is a trend worth considering." He later published a case report of an individual getting HPPD after mushrooms or MDMA.
I used to spar against a pro-drug advocate long ago on his website after a rather in-your-face member of HPPDonline.com would return back telling me all of the lies this person is saying and what he is calling us.
So, I would write in his territory (mid/early 2000's maybe?) on his site. and I used the same honest answers and stated that I do not have an answer to many of the common questions about the definitions of a disorder, but he disliked that I could attack his logical fallacies in not considering HPPD to be possible, This was occurring on his web site's personal forum.
A year or so later, a lot of things changed in the HPPD landscape (I was designing my first research experiment with Dr. Simeon) and I was drawn into another chance to go spar with his anti-HPPD crap because his followers were getting bad information.He did piss me off because, well to be honest, we were both punks with a sense of self-righteousness for our stance, but I think I had a better one.
However, I just agreed with him that his points could be valid in his perceptual reality, and I understood he would feel these things and was happy that he did not have to know HPPD.
Then slander, but I ignored it. However, interesting that it was almost 15 years ago and I am writing about it and can remember it. I can tell you that the most HPPD friendly researcher in this community didn't know HPPD existed and was shocked to see how much literature existed, then people in the comment section will not either.I realized it was a waste of my time and I should focus on the bigger issues. In the end, I can find references to this user only on user reports from 2000-2007 on Erowid.org and his personal site is defunct. The Erowids are very supportive. This young guy annoyed me, and when I let it go I made friends with the people on that side who were open to or completely accepted HPPD as reality. I am removing excess to start over to deal with the things that do matter.
That guy must have moved on or in prison or maybe here, but I know that his followers were going to do whatever they were going to do, and the other member talking about their HPPD was just as effective as me.t didn't matter what they said because I remember telling my friend during the a 7th hour of an LSD trip, "Wouldn't it be awesome if you just saw the world like this, but were not tripping?" It was only a month or so until my HPPD started. The Universe wasn't going to be subtle.
I include on my Google + page the response to what my bragging rights could be for: Dr. James Faddiman asked me (unsolicited) to be his LinkedIn pal and when I asked him why me? He said, "I am a serious admirer of your work." If a pro-psychadelic member of a site heard that was true, then if the are educated psychonauts they would hear the mic just drop.Thanks for letting me steal your thread.
- dk
(I don't edit my posts before clicking send because I have a million things going on in my head, and I am usually hitting "send" because I get a reminder how late it is. ) Ut us 3:23 AM, and I have stuff to sell online and get real sleep. But, I spent a few hours looking at the analytics from this site over the last few years (I do have it, the comprehensive ones), and my mind was racing. I'll try to focus writing earlier, so I can check it over to create sentences and stucture that form a cohesive unit linked to the sentences around it. )
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The history of browsing and reading while writing. I could re-write this to make so much more sense, but I think people will be able to work through it.
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I wrote this a stream of thoughts. It will be disorganized, but it would never happen if I didn't do it this way. At least, it would not happen now. It is important I get it out, and that you realize the sentences may be inverted or a section missed and picked up. I did not go back to edit it, and you will understand why.
I am David Kozin, and I want to let something go so I can succeed. If I do not work on this every day, I will never reach my potential and remain in hiding. Writing this may or may not be a good idea, but so far not saying anything causes me hours of stress each day that incapicitates me so much that I won't turn on a computer or leave the house because the anxiety is so high.
I am sure what I am going to say is not a surprise to some of you. However, I feel it is very important to mention and to discuss it publicly because I have reached the point where I am dedicating as much energy to managing my symptoms as I once did to HPPD.
I have ADHD. Unfortunately, it is sad that I must validate myself more than this, but the overdiagnosis of ADHD and lack of understanding of the disorder warrants it. Additionally, if you only see my history as bullet points in terms of my few but notable accomplishment you will think I am joking. If you have been with me since 1998 on this or one of the previous versions of the message board, it will make sense and purhaps you knew I had it before I did. Let me start the validation.
Without hesitation, I can say that ADHD has been the most debilitating disorder in my life. Attention disorders are associated with HPPD, but my ADHD began as early as I can remember. I always knew something was wrong, but until extensive testing, the results of my qEEG re-examined and an honest look at my life with family and friends did I know exactly what it was. I am deciding to talk about it because I have added an additional handicap to my success and with being fair to this community and my self but not talking about it and letting the problems associated with it pile up until I had to face it seriously or I would probably be in a much worse place right now.
In 1998, Dr. Abraham sent me to Dr. Frank Duffy for a Quantitative EEG (qEEG). The finding on my study was very unusual, but we didn't look at it as diagnosing any other disorder other than HPPD and to rule out other disorders that can cause visual symptoms.
WHAT IT SHOWS from my report:
"Sprectral data are surprisingly abnormal with consistently excessive fronto-central theta.
In comparison to an age appropriate normal database theta is increased by 3.49 SD broadly in the frontal and central regions without asymmetry.
n comparison to an age appropriate normal database, Theta is increased by 2.56 SD bilaterally in the fronto-central region with no asymmetry.
The front theta raises the possibility of a mild encephalopathic process as well."
WHY THESE ARE VERY ABNORMAL RESULTS:
THETA IN FRONT CENTRAL AREA IN EXCESS WOULD HAVE PREDICTED WITH 95% CONFIDENCE ADHD DIAGNOSIS
"After a very consistent and growing body of evidence, The FDA approved qEEG for testing ADHD along with clinical evaluations. It is the best marker that I can use to "prove" ADHD just like we use it to prove our HPPD. "
"Current research findings suggest that most children with ADHD display fairly consistent EEG differences in brain electrical activity as compared to normal children, particularly with respect to their increased frontocentral theta (4-7 Hz) activity during primarily resting state conditions. "
"A recent meta-analysis of 9 studies with a collective sample of 1,498 subjects found an effect size (ES) of 1.31 (95 % confidence interval [CI], 1.14-1.48) and an average excess of 32 % in theta band power for children with ADHD relative to controls"
ALSO:
I was sent for a 6-hour neurocognitive evaluation at University of Michigan. The results demonstrated expected measures in areas except attention. I scored in the 5th grade level for writing an essay with handwriting. Measures of attention scored in the severely imparied range and in the 4% for ADHD.
The first book I completed (Read from start to finish in any manner of time) was in 2009 after starting medication and work with a learning specialist and counselor.
My symptoms have created extreme levels of chaos in my life, and I consistently underperformed in academics except in the intense cases of hyperfocus on areas. I was the highest scoring student in math in an 8th grade evaluation, but never received a grade higher than C despite my love of math. The process of working "through" problems sets quite literally makes me so anxious that if asked would I rather work through a 100 question basic multiplication paper and do the problems in order (example: 3 x 32 =) for a Class Grade or just receive a C+ and not do the test... I would feel less anxious about an automatic C+ than going through the process of working 100 problems, despite my ability to do them.
I almost did not graduate high school because I received a D- in American History (the most basic course that ALL students pass based on an elementary knowledge of the topic [e.g. What are the three branches of government?]. I also received a D- grade in mandatory Home Economics. The balancing of a check-book, budgeting and how interest is calculated.
Yet, I was voted the National Honor Society President of my class. I had the raw skills and ability to hyperfocus on a new and exciting topic for a day that to save myself from failing a Math course in 1991 I took one day too learn the C language with a computer to write a program to use logic for diagnosis infectious diseases based on Y or N questions from a book. A full 20 pages of single spaced code. After that, my interest in programming was challenged because for some reason (I just can't explain it) I was UNABLE to move forward with learning programming and reading books on the topic.
I wrote the software for the Depersonalization research in 2 days on self-medicated (without doctor approval) Adderral learning PHP and writing an extensive database application to pass approval of Mount Sinai School of Medicine's IRB. It worked.
I have over 10,000 unread e-mails, mostly information e-mails, but the level of panic when I try to address this is overwhelming despite knowing that not reading the e-mails would be worse.
I have over-drawn checking accounts for about a total of $30 x 100 = $3000 dollars in charges and five closed bank accounts.
What is most important, is that just as much as people are unable to comprehend seeing what we do or how a person so underweight that they risk heart failure yet consider themselves fat or why a person with OCD must go through a routine with no basis in reality or logic and despite them knowing this to be true... they still have to do it or the anxiety and feeling inside is so distressing that it impairs life.
Nobody wants to operate like this. I didn't want to fail out of two colleges. I didn't want to not answer e-mails. I didn't want to pay $3,000 for maybe 500 dollars of items. I never wanted to miss doctor appointments, meetings with anyone, classes including when the Final Exam would be.
ADHD was not understood or on the minds of teachers during my educational development. I was called lazy, self-endulgent and my parents would punish me and judge me for not completing a basic chore or remembering a time. Never, did I get in trouble or disciplined for an action where I flagrantly attempted to make another person's life more difficult or harm or do harm to anyone. I was the gold star behavior student, but I would have teacher's in tears yelling at me for not completing assignments that they knew "I could do."
Well, at the same time my self-esteem was destroyed at its heart. It has been for so long. Having started this message board and knowing it has helped so many is the only comfort I have when I start to think that my life has been pointless.
I have been without health insurance for three years and living a chaotic life during them. I ended up in Iceland in a tent for 3 months, which was an amazing experience but everything I intended to do never materialized. I have yet to finish even a computer game to completion, but like Flight Simulators or a game with a 10-minute goal to win or lose. I master skills to create something, but implementing them is where I struggle every day. Every day, I punish myself further and finally had to be very forward with people about my condition and my attempts to work on them behaviorally in an intensive way and also with medication.
I recently decided to reduce my klonopin dose, which cascaded into a disaster of monthly withdrawls, days where I would fear opening my computer because hearing the sounds of the emails that are there would bring me to a full panic. I have 30 phone calls I have not answered, but would love to, but fear that my delay in actions or missed appointments would be on the other end. Yet, I can't go foward with what I know I can do, what I have already done that to a normal person would be completed in a few days. I have a research study for Characterizing all of the vision disorders that was approved by Harvard's IRB, and not executed for different reasons, and it would help so many to be used but putting it in a program desite the benefits even I would selfishly get still make it a challenge.
It took me 7 months, two of those months consisted mostly of anxiety over writing my HPPD story for a major British Journal. My girlfriend at the time was very understanding, but I could see how it upset her to see me struggle over something that I literally completed in less than 30 minutes when I was asked to do it against after I passed my deadline and removed myself from a short description of my HPPD. So much wasted time worrying and the anxiety over such small tasks that I can do, but just need to work with professionals and friends and family, but most importantly myself to find ways to work and live up to my potential. I have done it once, when I began medication and had a four person professional support group at college that let me read my first book and worked around my challenges, learnined cognitve ways to get past issues and have students actually say they wish they had my work ethic, which is a statement that brought me to tears when I first heard it.
So, I have 10k emails. I am going to have someone assist me on deleting the mass of it (anything from companies/etc) and to reduce it down to about 5 emails that are really important.
I am going to ask for help to put the survey together with Limesurvey for us to get it ready.
I have put together so many articles on volunteer management, the laws both domestic and internation, to the point of nausea including having the system to let people volunteer even if as simple as saying, "Hey You, could you take my 130 article database of HPPD papers already in a word document and look for new ones on medline and post them?"
I now have Medicaid because of an extension and because of "Obamacare" it comes with a health plan like everyone else and it begin the first of next month. Specialists in ADHD advised I would qualify for Social Security Disability, but I know when I had the write treatments and if I can just delete this garbage without fear and simplify life that I can excel for sustained times with medication and a lot of effort on the skills and letting others help me.
I am going to send this out, and ask nothing from anyone but help explain my biggest challenge and that an unanswered email was not because I did not care and in order to move forward I will need to set aside the massive amount of data and thousands of files in folders lost to me and reduce to the basic goal right now of a executing all of the things I have learned and prepared for to let others join in making the Society of Perception Disorders a reality and not fear help and let others decide how they will judge or perceive me.
Thanks for reading this far, I could not have done it. I started writing this at 11:30 and now I am sending it.
I am returning to my normal klonopin dose, because this increased anxiety is unmanagable and a horrible decision that I made to do at this point (reduce from 3mg to 2mg) which I have tried off and on and i have been taking 3-4mg of Klonpin daily since 1998. This is not the time to stop.
I will be in a few day radio silence, but will contact key individuals that I have promised to be in touch with and move forward.
Sincerely,
David Kozin
Here is my internet browsing history during that time:
2:26 PM
theta power adhd severity - Google Search
www.google.com
2:26 PM
theta power adhd severity - Google Search
www.google.com
2:06 PM
file:///Users/thunderbolth/Downloads/d912f50858005f3c01.pdf
file:
2:06 PM
A meta-analysis of quantitative EEG power associated with attention-deficit hyperactivity disorder. - Google Search
www.google.com
2:05 PM
A meta-analysis of quantitative EEG powe... [J Clin Neurophysiol. 2006] - PubMed - NCBI
www.ncbi.nlm.nih.gov
2:05 PM
Clinical Utility of EEG in Attention-Deficit/Hyperactivity Disorder: A Research Update
www.ncbi.nlm.nih.gov
2:02 PM
Clinical Utility of EEG in Attention-Deficit/Hyperactivity Disorder: A Research Update
www.ncbi.nlm.nih.gov
2:01 PM
Clinical utility of EEG in attention-defic... [Neurotherapeutics. 2012] - PubMed - NCBI
www.ncbi.nlm.nih.gov
2:01 PM
Specificity of quantitative EEG analysis in a... [Psychiatry Res. 2002] - PubMed - NCBI
www.ncbi.nlm.nih.gov
2:00 PM
Clinical Utility of EEG in Attention-Deficit/Hyperactivity Disorder: A Research Update
www.ncbi.nlm.nih.gov
1:58 PM
theta eeg Standard deviation to be significant - Google Search
www.google.com
1:58 PM
theta eeg Standard deviation to be significant - Google Search
www.google.com
1:58 PM
Understanding Brainwaves | Center for Attention Deficit and Learning Disorders
centerforadd-az.com
1:58 PM
Understanding qEEG Brain Mapping | Center for Attention Deficit and Learning Disorders
centerforadd-az.com
1:58 PM
ADD and ADHD in Adults | Center for Attention Deficit and Learning Disorders
centerforadd-az.com
1:57 PM
ADD/ADHD Explained by Dr. Silverman | Center for Attention Deficit and Learning Disorders
centerforadd-az.com
1:55 PM
theta eeg Standard deviation to be significant - Google Search
www.google.com
1:54 PM
Case Studies in Applied Psychophysiology: Neurofeedback and Biofeedback ... - Google Books
books.google.com
1:54 PM
theta eeg Standard deviation - Google Search
www.google.com
1:54 PM
theta eeg Standard deviation - Google Search
www.google.com
1:54 PM
Variability of EEG Theta Power Modulation in Type 1 Diabetics Increases during Hypo-glycaemia - Springer
link.springer.com
1:54 PM
http://link.springer.com/chapter/10.1007%2F978-3-319-00846-2_133#page-1
link.springer.com
1:53 PM
theta eeg SD - Google Search
www.google.com
1:52 PM
Introduction to Quantitative EEG and Neurofeedback: Advanced Theory and ... - Google Books
books.google.com
1:52 PM
books.google.com
1:51 PM
Lab #9 Quiz flashcards | Quizlet
quizlet.com
1:50 PM
theta eeg SD - Google Search
www.google.com
1:50 PM
http://journals.psychiatryonline.org/data/Journals/AJP/3732/109.pdf
journals.psychiatryonline.org
1:46 PM
http://cdn.intechopen.com/pdfs-wm/40099.pdf
cdn.intechopen.com
1:46 PM
theta eeg SD - Google Search
www.google.com
1:45 PM
theta eeg SD - Google Search
www.google.com
1:43 PM
theta eeg SD - Google Search
www.google.com
1:43 PM
theta eeg - Google Search
www.google.com
1:35 PM
Daubert and Frye Admissibility of QEEG
www.appliedneuroscience.com
1:35 PM
theta eeg SD chart - Google Search
www.google.com
1:34 PM
www.google.com
1:34 PM
theta eeg SD chart standard - Google Search
www.google.com
1:34 PM
www.google.com
1:34 PM
theta eeg SD chart standard - Google Search
www.google.com
1:33 PM
theta eeg SD - Google Search
www.google.com
1:32 PM
theta eeg SD - Google Search
www.google.com
1:32 PM
theta eeg SD - Google Search
www.google.com
1:32 PM
theta eeg SD - Google Search
www.google.com
1:32 PM
theta eeg - Google Search
www.google.com
1:32 PM
theta eeg - Google Search
www.google.com
1:32 PM
Specificity of quantitative EEG analysis in adults with attention deficit hyperactivity disorder - Google Search
www.google.com
1:30 PM
http://www.noropsikiyatriarsivi.com/sayilar/382/buyuk/19-27.pdf
www.noropsikiyatriarsivi.com
1:29 PM
Specificity of quantitative EEG analysis in adults with attention deficit hyperactivity disorder - Psychiatry Research
www.psy-journal.com
1:29 PM
Redirecting
linkinghub.elsevier.com
1:27 PM
consistently excessive fronto-central theta - Google Search
www.google.com
1:27 PM
onsistently excessive fronto-central theta - Google Search
www.google.com
1:27 PM
books.google.com
1:26 PM
Handbook of Clinical Child Neuropsychology - Cecil Reynolds, Elaine Fletcher-Janzen - Google Books
books.google.com
1:23 PM
ADHD
www.qeeg.com
1:23 PM
consistently excessive fronto-central theta - Google Search
www.google.com
1:23 PM
Depressie
www.brainclinics.com
1:21 PM
ADHD
www.brainclinics.com
1:21 PM
ADHD
www.brainclinics.com
1:06 PM
QEEG and EEG Biofeedback Fact Sheet
www.qeeg.com
1:06 PM
www.google.com
1:06 PM
theta Standard deviation - Google Search
www.google.com
1:04 PM
Behavioral and Brain Functions | Full text | On the analysis of EEG power, frequency and asymmetry in Parkinson’s disease during emotion processing
www.behavioralandbrainfunctions.com
1:04 PM
fronto-central theta SD eeg - Google Search
www.google.com
1:03 PM
fronto-central theta SD eeg - Google Search
www.google.com
1:03 PM
fronto-central theta SD qeeg - Google Search
www.google.com
1:03 PM
Theta rhythm - Wikipedia, the free encyclopedia
en.wikipedia.org
1:03 PM
Theta rhythm - Wikipedia, the free encyclopedia
en.wikipedia.org
1:00 PM
Electroencephalography - Wikipedia, the free encyclopedia
en.wikipedia.org
12:58 PM
Electroencephalogram (EEG) | Johns Hopkins Medicine Health Library
www.hopkinsmedicine.org
12:58 PM
anesthetic_theta
www.stanford.edu
12:48 PM
http://sccn.ucsd.edu/~scott/pdf/LooMakeig_Neurotherapeutics12_share.pdf
sccn.ucsd.edu
12:48 PM
qeeg adhdh - Google Search
www.google.com
12:48 PM
New EEG Based Test Helps Diagnose ADHD with Greater Confidence
www.medgadget.com
12:48 PM
Press Announcements > FDA permits marketing of first brain wave test to help assess children and teens for ADHD
www.fda.gov
12:48 PM
CDC - Attention Deficit Hyperactivity Disorders (ADHD) Homepage - NCBDDD
www.cdc.gov
12:48 PM
CDC - ADHD, Research - NCBDDD
www.cdc.gov
12:48 PM
CDC - ADHD, Symptoms and Diagnosis - NCBDDD
www.cdc.gov
12:47 PM
CDC - ADHD, Articles - NCBDDD
www.cdc.gov
12:47 PM
CDC - NCBDDD Publications Home
www2.cdc.gov
12:47 PM
Search Results: adhd qeeg
www.cdc.gov
12:11 PM
www.bcbsnc.com
12:10 PM
Neuropsychiatric EEG-Based Assessment Aid (NEBA) System - Google Search
www.google.com
11:32 AM
Lifting the Fog: A specific guide to inattentive ADHD in adults
www.scribd.com
11:31 AM
Scribd
www.scribd.com
11:24 AM
Google
www.google.com
Yesterday - Tuesday, June 17, 2014
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In Battle Supremacy, I am a member of SCAW and former CO of 37th Tank Brigade therefore: [sCAW][37th]THUNDERBOLT
I use this game, the clan group and love the respect of being in the best of the best squads... it is a nice escape. What system to you play on?
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I am writing the Articles of Incorporation now... the Society for the Study of Perception Disorders covers everything up to the Autism Spectrum Disorder area of these disorders. It is also in line with the DP/DR
s group I am a member of the International Society for the Study of Trauma & Dissociation.
Jimmyb84, contact me at david@perceptiondisorders.com.
That is also another reason it is good: I own perceptiondisorders.com and .org which allow for the main web site and a second site to forward or with subdomains operate other functions.
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Sytheso, I created an account with your e-mail address and no password, but also no ability to do anything accept edit your own imaginary information and visit the unfinished sites. Visit the site and find the password link and I'll help you through of you need it.
Thanks!
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I am waiting for additional funding for a virtual phone exchange for international numbers and to pay for phone calls in and out. Thank you for bringing it up, however!
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A public and non-public directory to host videos and pdf files would be great. I see that I am going to work with the DP/DR community with this and we will have movies and other stories to create personal connections with the audience.
I am creating a clearer document on the project and will post it by the end of the day. I think that will help others who may be on the side of the story and waiting because I haven't put up anything yet. I will put up some content, and any other individual looking to start writing a blog or has art or their you tube video channel that they want me to use their videos for should let me know with an email to david@perceptiondisorders.com
- David
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Ok, the Society for Study of Perception Disorders. I own perceptiondisorders.com, so I switched the domain. That is not common for a society to use a more memorable name or better search value as their domain.
Now, as I said this was a group effort. Let it be one. A few of us took NODID to eventually create original research and publish in journals. NODID is gone, but it was a practice run.
Where do we want to incorporate.
We will need one person to be the Registered Agent and their address will be public, and they will hold copies of all documents that should be available for inspection and must be a legal resident of the state.
I think we should have a full group of Incorporators, which will form the first group as Directors. Directors do not have any age or residency requirements in some places and not in others.
The first group of Incorporators will make the initial final decisions on drafting the Articles of Incorporation and the first Bylaws along with the initial committees that would have power to operate this company.
Initial Incorporators will have to sign the document, which will be moved through the mail as fast as possible and you will be known as a founder of the company.
Most will become Directors, if they choose, for the first term of the non-profit.
We should have five Incorporators. Perhaps eight Directors of the Board. Is this a good number? What do we think should qualify a person as incorporating for all of us? I think the Incorporators should bring a minimum of funds, so I take myself out of that picture. I would not like to be the CEO, CFO or COO or even on the Board of Directors. I would want to be the chief staff member, the Executive Director, which is a staff position working for the Board and at their will. It is also the only paid position.
My purpose is to suggest to this group we have a situation we can solve.
The message board is full of talent and finances but everyone is waiting for someone else to do something, and I want to be known for proving the theory people with these disorders are willing to make a small sacrifice to for a large return on their money. All it would take is to generate interest to get 5,000 people to donate $5 dollars a month and we have a $300,000 a year budget. This should not be hard. Or, is it impossible? How about 2,000 people? Even if we are an orphan disease, that is less than 200,000 individuals with the disorder, we should expect that $5/month should not be a problem to really change our future. Or, maybe out of all of the people we could not collectively get 5,000 people together to commit a $60 dollar check for a year. Even if you find someone else to write it for you.
How much did the drug cost that you took that gave you HPPD? What was your drug budget? $5/month? You should at least be able to give the same amount of money you spent on drugs to be able to fund awareness and generate research that can help all of us.
If it does not seem possible, I need to do something else because I am 36 and have nothing to my name but 200,000+ in debt with medical and past school. I will work my ass off to do it, but will other people be willing to put it forward to make this possible and make history as far as an organized patient group that would serve as a model for others and stand almost as revolutionary in the design and control from a perspective of patients being fed up and taking this into their own hands. I think it is unprecedented, and candidates for representative can raise millions from people willing to donate to a politician up to $300 dollars a person knowing it will be wasted. Can we do better?
David
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Society for the Study of Perception Disorders
Website: PerceptionDisorders.com
This is common for groups when they want their domain to make sense for SEO/Etc.
Ok, now get shit done.
ok, dns done.
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SSPD domains are taken. ISSPD.org is not but ISSPD os the ISS of Personality Disorder in the .com.
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International Society for the Study of Perception Disorders (ISSPD.org)
These will include, with their liking it or not, all disorders of perception. This is not the sensory problem (like needing glasses and a problem with the lens of the eye), but the part called processing: The moment the sensory trigger his the sense receptor or in many cases the perception exists without stimulus.
So, the name is technical accurate and it is International.
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I wonder if someone could write about what I have released?
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I had one and I have posted my results. In order for it to be done correctly, because it is based on a statistical database of prior results you would have to do it with Dr, Duffy (who essentially invented the q of the qEEG) and dr. abraham. It is not worth it if you don't have insurance and you know you have it.
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MORE PEOPLE NEED TO CONTRIBUTE A QUICK RESPONSE.
I am leaning towards that direction with the name, I like it. It is similar to the International Society for the Study of Trauma and Dissociation. The longest association name ever, but a good group
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The Kozin Foundation is not happening, it is something i own so it is holding in place.
However, I was thinking of a name that does not focus on the drug aspect and also covers the possibility for visual snow and persistent aura without migraine folk could be included.
So, ideas:
Council on Disorders of Altered Perception
Council on Perception Disorders
Society for the Study of Perception Disorders
The Altered Perception Disorder Society
Something?
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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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Jay, sign up and I'll give you staff level permissions. You can run with it and people can volunteer for the documentary and it can be its own section of the web site. People can crowdfund it and also with their addresses you can find people to stay with. You can have your own blog/etc and also the design needs work (liquid or static) it is pretty open.
I am also going to be sending messages to others to ask you to take a lead role if you would. I think for Jay he starts the documentary section that our collective funding (just 5 dollars a month from all of the regular readers that visit would be 300,000. Seriously. So, I am deciding that for the interest of the community it is time to wonder why we are asking others to come and help us when if we buy one 5 dollar item that was not needed in a month and that could have gone to a gigantic fund that would pay for very high end research. I will force action if I need to, but I think people will want to do this. I have a women from Pew who is doing a book and this project is part of the story. It is about patients who take control of their research and we are a model group because of our unique challenges.
Right now, the best thing you can do is just Text RECRUIT to +17474002617 to join. It will send follow up questions asking for your e-mail address, then you name and then address (maybe) but you will appear on the system and I will call you and ask you what your plans are. The site is not functional at the moment and still named the Kozin Foundation. As much as I love the name. LOL it is a holder until someone can have a better name and wants to pay for a domain name.
Cheers,
David
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NO MORE LONG POSTS. THE PATH I AM TAKING FOR GETTING ALL OF US TO MAKE CHANGE FOR OUR DISORDER AND CREATE THE FUNDING FOR RESEARCH & AWARENESS IS CORRECT. HERE IS THE SYSTEM IS AM USING AND SOON TO BE ONE OF A FEW OFFICIAL "EXPERTS" IN USING:
Omidyar Network – the world’s most well-respected philanthropic investment firm – is joining their small board. They are leading an $8M investment, along with Andreessen Horowitz, to further their mission of making everyone a leader.
eBay founder Pierre Omidyar and wife Pam established Omidyar Network based on their conviction that every person has the power to make a difference. Our work enables people to discover that power, improve their own lives, and make lasting contributions to their communities.
I KNOW THIS IS THE WAY WE CAN DO IT
HERE ARE OTHERS:
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The 2020 Mom Project ("The Project") is an urgent national call to action that sets forth an aggressive new path for solving what some have called one of the biggest public health concerns of our time: the silent maternal mental health crisis which impacts up to 20% of expecting and new moms.
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http://www.thebullyproject.com/
The BULLY Project is the social action campaign inspired by the award-winning film BULLY. We’ve sparked a national movement to stop bullying that is transforming kids’ lives and changing a culture of bullying into one of empathy and action. The power of our work lies in the participation of individuals like you and the remarkable list of partners we’ve gathered who collectively work to create safe, caring, and respectful schools and communities. Our goal is to reach 10 million kids or more, causing a tipping point that ends bullying in America.
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http://www.notinvisible.org/ (DOCUMENTARY TRAILER TO OSCAR NOMINATED FILM
)Invisible No More is a non-partisan coalition working to end sexual assault within the U.S. military and to help survivors of Military Sexual Assault heal.
Today, a woman serving in Iraq or Afghanistan is more likely to be raped by a fellow service member than to be killed in the line of fire.
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Hope For Paws And Fiona On Anderson Cooper
With Co-Host Kristin Chenoweth.---------------------------------------------
PART OF THE PLAN IS THAT YOU WILL BE INVOLVED IN MAKING THE PLANS
I WILL POST ADDITIONAL PLANS FOR THE PHASE 1 IN THIS EVENING. I HAVE CONTACTED AUTHORS AND OTHER INDIVIDUALS TO UNITE THE PROJECT WITH OTHER PROJECTS WITH SAME GOAL. Sending a text or e-mail to the recruitment page is a great first step and allows me to use as leverage when talking to others. You can choose to have your contact information private. Your first and last name is placed in two spots, and one is private. They use this system for political campaign contributions, so I trust the security on that level. Having your real address and name available to the system allows you to choose to be contacted when research occurs, receive printed materials, be alerted when a doctor takes the HPPD Pledge and is in your area, or elect to be visible to people in your area for meet-ups and help use plan a road-trip documentary. Also, this is how I can validate the research project I designed at Harvard and get it going.
- David
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Yes, why I am trying to get the visual snow community and the other similar disorder groups on board. Why the site will not be called Hallucinogen anything.... because many drugs, not just hallucinogens, cause this problem.
We can't ignore a reality, but part of that reality is good research may find no significant difference between all of our groups.
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http://waggeneredstrom.com/downloads/DSCA-Summary.pdf
More than half of survey respondents (55%) who engaged with causes via social media have been inspired to take further action.
More than half of survey respondents (55%) who engaged with causes via social media have been inspired to take further action. The most common actions taken include donating money (68%), volunteering (53%), donating personal items or food (52%), or attending or participating in an event (43%).
What motivates these further actions? Survey respondents indicated that stories are key; more than half (56%) agree they read a story on social media that made them want to do more. Other drivers include online videos (41%) and photos (40%), along with seeing family and friends also taking further action (39%).
This is why you will be able to blog your story, include images and work on music and art for demonstrations. Independent film is important and our own footage and story telling.
We will raise 100,000 before the end of this month. If we work and become motivated about learning what we are doing and how you are expected to be a part of the process that you can be proud of.
- David
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I am creating a page for members that pay the details of how the money is spent. For members to review, the basic information will be published on the web site, but to access the accounting system requires additional work.
Additionally, different specifications can be made for different types of donations. This is what we are all thinking about as a group. I have received 10 strong leads for individuals to participate and two donations from early adopters.
- David
However, I just agreed with him that his points could be valid in his perceptual reality, and I understood he would feel these things and was happy that he did not have to know HPPD. 
Anyone know where David Kozin went?
in MAIN AND GENERAL FORUM
Posted
Right here.
Break time is over. My ADHD is becoming increasingly better managed. I lost my father, but this allows for a lot of powerful changes to happen and to do them with the best of intentions.
Yes, I do have research ideas.
No, I don't have a cure I have been hiding.
No, I did not read any e-mail in the last 2 years with the exception of one I was explicitly expecting, so I am backing up hard copies and then wiping all of my mail and other areas clean, starting my design and plans for building my own Tiny Home with Support Room (So, I can travel to Burning Man or other areas around the Country to set up Mobile HPPD research/information centers.).
I have a verified Youtube Channel. I will be making use of this wonderful way of sending messages. I will also be working with other non-profit for projects with HPPD.
Best wishes!
David