FOX story on flu shot and Dystonia

Jenny McCarthy and Jim Carrey (Generation Rescue) immediately disconnected from the flu shot/Dystonia connection. All links and information are gone from their website.

FOX backpedaled almost immediately. I am sure people saw that.

They had a doctor on who said that it did not appear to be Dystonia.

We can leave it at that for now.

Kind of says it all.

HAPPY HALLOWEEN.

Educating future doctors about Dystonia

Pic is of me post speech at the Hockaday School for Girls.

Many future doctors there.

Now they all know what Dystonia is. I shall be lunching with them soon.

From my niece -- BIG love for her!

i love you sooo much i am wearing your distonia shirt tomorrow at the zoo so every one can see

BREAKING NEWS:

my zoo trip was canceled but i am wearing that shirt next time we go to the zoo love u

The TED slideshow-speeches are forthcoming

TEDxSMU from tedxsmu on Vimeo.

Let it load before watching it.

Another speech about Dystonia-at Hockaday in Dallas, Texas

Hi there,

I am speaking tomorrow at the Hockaday School for Girls (my alma mater) to an age range of 13 to 18 about Dystonia and how the public responds to special needs people.

Cannot wait!

It will be a multimedia event -- and an interactive one, as well.

Rogers

xo

Pics from the most excellent Allison V. Smith

http://www.superficialsnapshots.blogspot.com/

TED-my speech about Dystonia

Hello there,

TED could not have gone better. The convention will be viewable soon. Details of how my speech went will be written by a guest writer who was in the audience.

It was an excellent day for Dystonia.

www.TED.com

Rogers

xo

(see pic of some cool chicks wearing BEAT DYSTONIA t-shirts)

DYSTONIA TO BE DISCUSSED AT TED

Saturday, October 10th

Dystonia will be a topic at TED.

www.TED.com

Go to the website and you will understand the importance of this.

Shirt info is on this site. Many email, so just look to the right side of this site. Thanks!

RH

xo

L.A. Triathlon! Oct. 4th! Go Jenny Baers!

Hello fellow humans,

My heart has felt full for so long now from all of the support I have received from friends, family and people I have not yet met. When not working, I spend every waking moment as an advocate for others who do not have the support that I am so blessed to have.

Yeh, the shots still sting, but thank God for a high pain tolerance. I actually look forward to my treatments, no matter how painful. And I have fun with it. It's the only way to go for me.

I wish I could do this tid bit as a flow chart, but I am kinda excited to share that I have willed myself (with the help of treatment) from a wheelchair, to a fancy red walker, to a cane and now to an occasional cane. I have remained chipper through this wild ride with Dystonia, dammit!

My relationship with this body is this: we are "frienemies." I love my body, but it fights me. I am pretty sure we are going to work it out so we are 100% friends soon.

Another funky little thing...I have always disliked jogging. Dislike in CAPS.

Now I run 2 miles a day. Happy to report that I have not fallen once. It's raining today -- and it just so happens that I enjoy running in the rain, so that will be a good one this afternoon.

Total aside: I want to say a huge thanks to BARBARA GREEN for taking so many photos of my ongoing journey (they are all over this site). Not only is she stellar at what she does, but she is one of the kindest people I have ever had the pleasure of knowing.

www.barbaragreenphotography.com

You must see her site. If you want a referral to her through me, let me know. Or you can contact her directly.

Last, but NOT LEAST -- huge thanks to Jenny Baers for competing in the L.A. Triathlon on October 4th in honor of BEAT DYSTONIA (501)(c)(3).

I love her for it -- and for what a wonderful human being she is, of course. I have known her for many moons and was so touched that she wanted to do this to raise funding and awareness for this orphan disorder. It is not as rare as people think.

It is undiagnosed and misdiagnosed and I will be saying that until it is on the radar of the U.S. Government, doctors and general public.

Go Jen! We will all be rooting you on.

Love,

Rogers H.

xoxo

(both photos above are courtesy of Barbara Green)