I have big admiration for those who establish the POISE center. I can imagine their wonderful personal initiative and associated challenges back In 2007. I can see a lot of people are benefiting from the resources and made them feel that they are not alone. I understand the fact that POISE is not only a rare disease but also a very complex disease that involves the immunological and neurological system of individual body. I have noticed quite significant number of members benefited from the resources and able to control the impact of POIS on their quality of life. I can't hide my concern also to observe the fact that participation of members significantly decreased in a recent time may be either because people have got enough information to control the diseases or fed-up with getting an absolute cure. I have joined the center quite recently and have got valuable lessons from different resources posted under different topics. I should thank from my bottom of heart those who took the first initiative who made this POIS information center a reality. however, I have strong believed that the center should grow up to the level of an institution/ NGO in order to help POISERs living in poor nations who have no any alternatives or means to try to any kind POIS symptoms control options. This effort could also support for the global advocacy endeavors in order to promote POISE as a global problem. Given the fact that the disease has cognitive challenges and its serious impact on an individual social and economic life a person living in a poor nation could suffer a lot due to complete absence of accessing and trying any available treatment and control options. I am a good testimony for this and still suffer by this cruel disease with little options. I understand that you might argue the fact that the center meets its objective according to its establishment goal but I need to see that this valuable experience should grow up to reaching the needy people globally and become an organization that addresses POIS and other similar health problems, Finally I have very strong appreciation and wishes for those who support for the research effort to get final cure for this ailment.
God bless you all
