|Posted by M Chiasson ® , Mar 09,2001,17:57||Archive|
From what I see, many of us Blepharospasm/Meige patients also belong to the Dystonia Foundation and also attend their Symposiums, support their efforts, etc. Since only 14 % of Dystonia patients have Blepharospasm, the people with Cerivical Dystonia (44%) often have a greater influence of the direction the Dystonia Foundation takes.
For the past several years, I was the Atlantic Canada Representative of the Dystonia Medical Research Foundation Canada.On Feb. 28th, I resigned from that position because I felt a greater push for Fund-Raising than Patient Care even though I was told by the leaders that Patient Care came first. However, the actions of the Leaders did not match what they told me privately. (You can see my Resignation on their Bulletin Board about half way down the page on March 6th.)
Do not get me wrong. We really have to support them in Fund-raising for research in the same way that we have to do Fund-raising for our own Blepharospasm Foundation. The way I look at it is that Fund-Raising is an on-going thing if we are ever to find a cure for Blepharospasm/Dystonia. I gather that since we are smaller in number and have a lot more in common, I feel the Blepharospasm group puts the patient first whereas the Dystonia Foundation has several other Dystonia groups under their wings. Even our newsletter (even though it is smaller) talks more to the patient rather than focussing on who holds what position and what projects brought in the most money. Its too bad because I'm sure the people in these positions are well-meaning and give a lot of their personal time for their Foundation. As for their office staff, it is second to none in their caring and efficiency.
I often wondered why the Blepharospasm Foundation was not under the umbrella of the Dystonia Foundation because I feared there must be a lot of duplication. It is regretable that this could not happen, however, I feel that we would be swallowed up by the Dystonia group and our Blepharospasm patients would not get the same Patient Care and Attention they get from the Blepharospasm Foundation. The greater the co-operation between the two organizations - the greater the benefits for the patients. Maybe someday?????..Marcellin Chiasson, Nova Scotia, Canada