Let's Start Finding A Cure for POIS - - NOW!(400+ PM's and emails will go out Monday to everyone who registered or surveyed with us at both forums. Since 2007) Dear Friends and Fellow POIS Sufferers,
On February 18, 2007 the first post about our struggle with POIS appeared on The Naked Science Forum, an online science discussion forum that includes science, medicine and technology news. It was John21 (now a Senior Member on NSF) who took that first brave leap into the online world of POIS. Others describing their unusual and very disturbing symptoms of POIS (a term described by a Dutch researcher in 2002), immediately followed. And so, the first POIS forum was born.
Since that first post, 580 pages of posts detailing the POIS experience have been filled. We have documented our symptoms, our interactions with the medical profession (often very demoralizing and disappointing), medications and/or supplements that either made us feel better, albeit temporarily, or made us feel worse. So besides supporting each other while in the throes of a very isolating disorder, we collected specific and intricate data, often of a very personal nature, hoping that one day we’ll help find a cure for this dreadful condition.
Some of us went as far as to make lab rats of ourselves, trying concoctions and physician-prescribed medications that did us no good.
And we’ve also relied upon humor! Yes -- humor helps invaluably when things seemed so desperate.
As time passed, we realized the need for a forum of our very own, where ideas could be documented by subject, and where the forum was ours and ours alone. Daveman, another Senior Member, painstakingly designed this new forum,
www.POISCenter.com . While it is still a work in progress, it is the one and only online forum
specifically dedicated to supporting others with POIS.
As most of you know, there is precious little research on POIS.
We, as a group, are going to change that!! We have affiliated ourselves with the National Organization for Rare Disorders (NORD),
www.rarediseases.org , a non-profit organization that is working very closely with us to find the world's best medical/scientific minds help us find the cause, treatments, and a cure for POIS. And by "best" I mean not only brilliant academic researchers with sterling academic credentials, but who also posses two critical ingredients: Passion and Compassion. On Tuesday, June 28, 2011, you can view our group’s link on the NORD site at
http://rarediseases.org/rare-disease-information/rare-diseases/viewIndex?tab=P&query_start=51 The starting point is for us to fund a POIS Research Grant, with NORD's help. Please read this very brief summary of the research program and our growing determination to do what it takes to fund our first research grant --
http://poiscenter.com/forums/index.php?topic=125.0 In only two weeks we have already collected more than $2,250.00. But we need a total of $33,500. This is where you come in.
The rest of the science world will eventually take POIS dead-seriously, but it's up to US to first put the wheels in motion and show them solid, concrete, medical, peer-reviewed evidence of our disorder.
That is the intent of the Research Grant program, and of the funding of our first POIS grant.
So, PLEASE...donate what you can to our research grant fund!
Please donate here:
http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3 The past 35-plus years of our other fine moderator's life, "Demografx" have been filled with the agony of POIS. But YOU have made it all meaningful for him and us by making us "POIS friends" and allowing us to help you in our modest efforts to our cause.
And--if he hadn't listened to YOUR advice on our precious forums, he would most certainly not have experienced a miraculous 80% POIS-relief for his specific symptoms! As Moderator, he received so much in return from the forum members! : -)
Please jump on the bandwagon with us, and donate whatever you are able to. No donation is too small!
Together we are going to cure POIS!!!
Best wishes and best regards, everyone!
Yours,
daveman
