Dystonia Advocacy Day

April 15, 2015

Every year around this time, people affected with dystonia and other members of the dystonia community go to DC to meet with various state elected officials. 

I have been a part of this several times years ago. I guess I was jaded by the possibility of meeting a senator etc to think that we were making a difference. 

I now have a large distrust of politicians and I honestly think that this event is more for pr than anything. I have met at least five elected officals, we had our pictures taken and in some cases they were published.

The foundation picks very expensive hotels in DC for meetings and for the group to stay in..so expensive that it limits those who can afford to go. From my past experiences, 90% are over retired age. 

It has been at least five years since I have been and yet I know what they will likely be told to say. Nothing changed when I went the first time I went to the last time and I am pretty sure its the same this year too. 

I had fun going when I went but the fun wasn’t meeting the politicians or rather their aids. The fun was meeting and hanging out with others in the dystonia community. 

While the foundation has these events yearly, their large bi-annual kid and adult symposiums have stopped because of “lack of funding”. The symposiums are geared more to information for newly diagnosed or those seeking new treatments. 

What I really enjoyed about the symposiums was hanging out with people with dystonia and parents of young kids to be like hey I made it out with it and you shouldn’t expect any less for your kids. I think that is more important than meeting with some elitists aids for 15 minutes max. 

Scientology Documentary

April 12, 2015

There is a recent documentary by HBO on Scientology that I found interesting and you might as well. If you have HBO, try and catch it on tv or just go to the HBO on demand and then go to documentaries.