ADVOCACY CALL # 2 -- BEAT DYSTONIA

Howdy!

Info for call tomorrow.

Sunday, Feb. 7, 2010

12pm, PST, 2 pm CST, 3pm ESY

Dial in # 219-509-8111

Access code 7949110

BEAT DYSTONIA Advocacy call #2

BEAT DYSTONIA's second advocacy call is set for Sunday, February 7th

12pm PST, 1pm MST, 2pm CST and 3pm EST

(European folks, email me and we can figure out the time difference)

Please email beatdystonia@me.com to register. I will need name, phone # and email address.

An agenda will be sent out and with a little homework for those who are willing to participate.

Again, if you do not register with us, you will not be able to access the call. xxoo

The day to day of Dystonia

I have been thinking about this for a while and now that I am having a rare night of insomnia,

I decided that I should lay it all out there.

For those with or without a chronic illness, this thinking can really apply to anyone.

I want to acknowledge how mentally challenging Dystonia is. As well as other chronic illnesses.

I will be addressing this on TV soon, as well.

Over the years, pre-Dystonia -- I have shored up my fortitude, so I have been able to travel on through, but not without feeling constantly challenged as related to my mindset, my hope, my role, my everything.

As I have said and written before, I am fortunate to have a support system and I know many do not have that. But I have experienced great loss from having Dystonia. I had to move on and be un-stuck...or I would be of no help to anyone, including myself.

Living day to day and not knowing what commitments you can keep, how you will feel and how you will look from one day to the next is a HUGE issue. Personally, I found a spiritual guide who I know will make time to talk to me when I need it. The same goes for my specialists.

Shame is brutal. No more shame. That is something we must work on. Agreed?

I am open to others' perspectives on that.

This is something that I want to discuss on the 2nd BEAT DYSTONIA call that is coming up.

My personal support system has helped -- as well as reading certain books that shore me up further -- and of course, verbally expressing my concerns to friends and family about it. I call it the Stone at this point (as mentioned before) because I am so tired of saying "Dystonia". Or "the D word" works.

I have such love for our Dystonia tribe. I am well-aware that we all have different presentations and challenges. I remain very sensitive to that.

Since now I think my insomnia may be coming to a close and Lincoln is snoring, I wanted to acknowledge the mental aspect related to having an orphan disorder -- not a rare disorder. At times, I find the mental challenge to be greater than the physical challenge.

I do not want people to feel alone in their moments of, "Am I going crazy?" or "This is just too much, I am going to crack!"

I get all of it. And I applaud all of us for battling through it with kindness and the willingness to ask for help.

I am on a life long mission to bring us all together and leave the politics to those who are more focused on that than the human side of things.

Yes, I will donate my brain, but how about now -- what are we doing now to help all of us? How can we get more foundations to allocate more $ for science. How can we get our government to recognize it as more than a rare disorder? Guess what, I have the emails from undiagnosed and misdiagnosed patients and it is clear that the estimated numbers around the world are grossly underestimated. We need to enlist the researchers, the doctors and the foundations to think outside of the box. People, I bought extra memory to save the kajillions of emails from people who are not among the counted Dystoniacs.

We should demand more help, but there is a process to that and I have many ideas about how to achieve that.

I am not criticizing other groups, but I think a new approach is on the horizon -- at least, it is on my horizon. Trust me. I cannot do it any other way.

This is not business as usual for me or for those patients whom I know and don't know.

Sticking together is key. I am up for it!

And I will always find a way to find the humor in even the darkest of days. I can't help myself --

and that is why my next posting will be wonderful descriptions of my spectacular falls.

Much love,

Rogers Hartmann

(the pic is of me, my parents and my sis graduating from Cordon Bleu)

Beat Dystonia's new mission statement

As we go into high gear fundraising, BEAT DYSTONIA has a renewed mission statement.

"To raise awareness, money for science, and to advocate for those who would otherwise be left behind."

As everyone knows, we are very patient-oriented since a number of us with BEAT DYSTONIA have various presentations of Dystonia.

Donations can be made to http://www.cftexas.org/beatdystonia

Any amount is appreciated.

In short, funding is important and our allocations will be very transparent. I have ST, but I honestly, have been more focused on other presentations that are more debilitating.

As always, huge thanks to Emily Novick for her unending support and partnership.

And she will wallop me for posting that, but I don't care.

Hello tribe! Another call scheduled...

BEAT DYSTONIA's second advocacy call is set for Sunday, February 7th

12pm PST, 1pm MST, 2pm CST and 3pm EST

(European folks, email me and we can figure out the time difference)

Please email beatdystonia@me.com to register. I will need name, phone # and email address.

An agenda will be sent out and with a little homework for those who are willing to participate.

A number of BEAT DYSTONIA attendees have expressed interest in fundraising for

a patient run non-profit with 1% overhead. Meaning, us.

Let me know if you are interested and I can send you the guidelines. It's easy and it would be much appreciated. I tend to do everything myself and I will admit that some help would be forever appreciated. As, you know, we are focused on science so that we can all feel better soon!

I will be using a different service next time, so anyone who is not registered will not be able to access the call. Just a heads up on that.

Also, minutes are meant for those who attend and for patients -- not to be posted since people are discussing private things and sharing private connections. I must be diligent about that so that we all feel safe.

Also, I would still love for people to buy BEAT DYSTONIA t-shirts. We are sold

out of XL, but have some left in other sizes. People love them and I am proud to say that I have

seen people whom I do not know wearing them in various cities. All good for us!

Much love,

Rogers

xo

(photograph courtesy of Barbara Green...www.barbaragreenphotography.com)

It's me checking in to see Dr. Lew at USC Medical Center

TED speech officially launches today!

Today is the official launch of my speech at the wonderful

TED conference.

Huge thanks to Sharon Lyle and the Young Family.

It was such a great experience.

TED will be sending out a blast with the corrected video later today.

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

POSTING SOON.

I will be a loyal TEDster for life.

AND a loyal Dystonia activist until we find a cure -- and maybe even after that!

The BEAT DYSTONIA Advocacy call is comin' up!

Thanks to all of you who registered!

Speak to all in about an hour.

(Pic is of Lincoln and me)