Wednesday, July 11, 2012

Just What is Being Done?

A few days ago someone posted on Facebook that they were "amazed" by people trying to get money from those who suffer.  I first thought that they were talking about the "snake oil" people out there who promise a cure for RLS/WED.  Instead, this person was upset with the Foundation about several things that the Foundation has no control over.  Frustration with uneducated doctors, medications that are expensive and don't work, unnecessary testing is completely understandable but certainly not the fault of the Foundation. 

Some people seem to think that the Foundation staff and Board of Directors should have answers for every question and are personally responsible for every facet of RLS/WED--education, awareness, areas of research, new medications (or lack of them), doctors who don't care, and the list goes on and on.  All of this should be done, of course, without any expenses being incurred or asking for donations.

I realize that we all need to vent from time to time and Facebook is one area to do that.  I have done my share of ranting and will probably do more in the future.  The problem comes when a person or organization is attacked and nothing can be said that will help the attacker feel any better.  No one comes out any the better after something like this. The pain this person (and others) feel is tremendous or they wouldn't have posted to begin with.  Personally, I am still upset that this person feels so alone. 

But it did serve to point out another problem.  No one came to the defense of the Foundation, except the Foundation itself.  That leads to the question--is this what others believe?  Or is there a misconception about the Foundation?  So here is your opportunity to ask questions or post comments.  I truly want to know what your perception is of the Foundation.  I will answer questions to the best of my ability, as well as the Foundation's.

If you read this but choose not to respond, that is your right.  However, you are missing an opportunity not only to educate yourself, but to help us see where problems lie that can be corrected.  Helping us helps you!

Moon & Stars,