HOW TO DONATE to BEAT DYSTONIA (501)(C)(3)

www.cftexas.org/beatdystonia (for donations online)

BEAT DYSTONIA is housed by the stellar Communities Foundation of Texas. Communities Foundation of Texas traces its roots back to 1953. Since that year, more than $1 billion in grants have been made by the Dallas-based foundation. It has grown along with North Texas to become one of the largest community foundations in the nation.

For more information on how to donate to BEAT DYSTONIA, here is the main page:

http://www.cftexas.org/NetCommunity/Page.aspx?pid=183

WE NEED YOUR SUPPORT. Thanks!

WE ARE ALL PRO BONO. 1% overhead for clerical costs.

Email: beatdystonia@me.com
Twitter: @beatdystonia and @auntrogers
My Space: Beat Dystonia

If you have any questions, please call 323.251.1021

Please check out ASEA. A portion goes to the BEAT DYSTONIA fund.
http://www.teamasea.com/beatdystonia

ALL QUESTIONS WELCOME! It has helped me greatly!
Talk to your doctors before taking it since we are all on different medications.



Dystonia is an orphan disorder that needs more money for research.

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Los Angeles, New York, Dallas/Fort Worth, United States
I am the founder of BEAT DYSTONIA (501)(c)(3) and work daily on awareness, fundraising and personal advocacy. You are not alone and do not hesitate to post or reach out. I'm here and focused on our collective wellness.

Thursday, October 1, 2009

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)

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