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.

My Photo
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, December 31, 2009

Auction to benefit BEAT DYSTONIA


Please bid on a lovely (new, of course) North Face fleece pull over.

You can pick your color and size.

I am somewhat at the mercy of what is in stock, but I do not foresee that being a problem.

Minimum bid is $50.00

We will throw in a bonus BEAT DYSTONIA t-shirt.

(See picture of a North Face fleece pullover -- very comfy!)

Bidding closes at 10:00pm Pacific Time on January 2nd (Saturday)

Email BeatDystonia@me.com

Wednesday, December 30, 2009

BEAT DYSTONIA Advocacy Call, January 3, 2010


Hello tribe,

The deadline for participating in the call hosted by BEAT DYSTONIA is
January 2nd is 12pm PST, 3pm EST.

Email beatdystonia@me.com before then, so you can be included in a great
kickoff into the new year,

Love,
Rogers Hartmann

Saturday, December 19, 2009

My TED speech


Hello all,

TED is still fixing a couple of typos and such and then they will officially launch my speech
about the D Word, The Stone...Dystonia!

Many of you probably already know this, but we are required to stay within a very stringent
pre-set timeline.

I hope you like.

TED viewership is insane...many, many avid TED followers all over the world.
Onward with awareness.

http://www.tedxsmu.org/2009/12/16/rogers-hartmann/

Rogers
xo

(Picture above is of me and my brother, Greg --
both happily dealing with Spasmodic Torticollis)

Wednesday, December 16, 2009

ADVOCACY CONFERENCE CALL hosted by BEAT DYSTONIA



A great way to kick off the new year!

All are invited to participate, listen, share on a conference call that I will
moderate along with the wonderful Renee LeVerrier.

It will be very open and hopefully, inspirational.

Details are:

Sunday, January 3rd, 2010
12pm PST, 2pm Central, 3 pm East

RSVP to beatdystonia@me.com

I will send out an agenda in advance so people can see what we will be talking
about and feel free to make suggestions after reading the agenda and I will do my best to incorporate them.

Once we are closer to the date, I will send out a call-in number with a passcode.

The only cost involved are your long distance charges.

No one should feel alone with this wacky disorder, so I would love to get folks that I already know via phone, email and some in person together so we can all feel a sense of community and support. And I hope some new people will join, as well. All welcome.

Love,
Rogers


Friday, December 11, 2009

An unexpected place for relief


Relief!!!

So, yesterday I was dropping my mom off at the airport. Always a big, tight hug and many "I will miss you's." And the waving until you cannot see each other anymore. I helped with her heavy bags because I can. So, I do it even though she begs me not to. I refuse to be fragile, so I'm not. Lord, I just chased Willa (our corgi) all over the backyard to get her in before it started raining again. Um, Corgis are herding dogs, so I had to lower my center of gravity and broke right and left until we both broke into the same direction and I nabbed her. Victory!

Anyway, that was a digression..

Back at the airport, the waving was done and I was taking the north exit and came upon a rather enticing grassy area right next to one of the terminals that had a big yellow street sign that read "RELIEF AREA."

I thought, perfect! My back is killing me from the ever so delightful twisting and pulling that Spasmodic Torticollis has so kindly offered up to me. So, I pulled over.

A little relief park. Maybe my pain would lessen even though I don't fight with the pain, so if it didn't go away I would not hold it against my body.

So, I sat for a bit. Watched some VERY large planes take off. I got a few stares from people driving by.

I felt relief just from reclining in the grass and listening to those powerful sounds that planes make when taking off or flying low overhead.

Yeh, the Relief Area is where doggies (probably kitties, too) get to pee or do ye olde #2. I knew that (just in case you have been thinking I was clueless about what that sign meant).

I had scoped out whether any "relief" had occurred in the area where I would lay down.

I was in the clear.

I just liked being in a place called the Relief Area.

(picture is of Lincoln Hartmann peeing in the snow-his first snow)

Monday, December 7, 2009

DYSTONIA COALITION


As of today, the DYSTONIA COALITION logo is up on our site.

We are thrilled to unite with the various foundations and patient advocacy groups that are involved, so that we can tackle the many challenges of Dystonia head on and in concert.

And we have a great leader in Dr. Buz Jinnah in overseeing management of the NIH funds, matching funds and in general, overall ideas about how to better serve the Dystonia community.

More information and press releases to follow.

Great news for all of us! A united front.


Sunday, December 6, 2009

The Dystonia Coalition

Here are the straight forward facts about the Dystonia Coalition that is funded by the NIH.

H.A. Jinnah, MD, PhD, professor of neurology and human genetics at Emory University School of Medicine, will direct the Dystonia Coalition, with Joel Perlmutter, MD, professor of neurology and radiology at Washington University School of Medicine, as co-director.

The list of participating foundations and patient advocacy groups will be announced, as well.

Finally, the logo and the mission statement should be posted by all groups involved at the same time. This information will be released shortly.

There is not one group that is controlling it. As stated above, it is overseen by Jinnah and Perlmutter and all organizations have an equal role in this project.

No photo on this one. This is crucial information that all should know.

Best,
Rogers Hartmann
BEAT DYSTONIA

The Little Hartmanns -- the loves of my life.