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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



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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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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?



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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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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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