Sweet Imagery and DMRF

Sweet Imagery and DMRF have partnered together to create custom Holiday cards with 50% of the proceeds going to DMRF! Let's spread awareness through the holidays!

contact SweetImagery@gmail.com or visit http://sweetimagery.blogspot.com for more information or to place your order!

Southeast Regional Dystonia Symposium – May 12, 2012

Hosted by Dystonia Support Group of Alabama
May 12, 2012

Arrington Auditorium
Linn-Henley Research Library
2100 Park Place,
Birmingham, Alabama

This all-day symposium is free to individuals with any form of dystonia and their family members and/or caregivers. Advance registration is required. Registration includes all sessions, breakfast bar, lunch, and afternoon refreshments. Registration is limited to 80 attendees due to space.

Guest speakers include:
--Janet Hieshetter, Dystonia Medical Research Foundation
--Dr. Erwin Montgomery, University of Alabama, Birmingham
--Dr. Mahlon DeLong, Emory University
--Howard Thiel, ST/Dystonia, Inc.

To register, email Ken Williams at klwmgw216@aol.com This e-mail address is being protected from spambots. You need JavaScript enabled to view it

8:15 am - Registration Opens & Breakfast
8:45 am – Sessions Begin
12:15 pm – Lunch
1:00 pm – Afternoon Sessions & Break-out Groups
4:00 pm –Meet Adjourns
A special rate of $99/night (not including tax) is available for a block of rooms at the Sheraton Birmingham Hotel intended for those attending the symposium who require overnight lodging. The rate will expire April 11.

Dystonia Support Group meeting - Saturday, February 11, 2012

Well, the time is here for the February Dystonia Support Group meeting.  The date will be Saturday, February 11, 2012.  The place is at Covenant United Methodist Church, Dothan, Alabama.  We will have the usual 'meet and greet' at 9:30 and the meeting will begin at 10:00.  We will be out around 11:00.  Please feel free to contact us at DothanDystoniaSupportGroup@gmail.com for more information.

See you Saturday!!

Birmingham meeting - 1/21/2012 - Dr. Karen Jauarajs, guest speaker

DSGA MEMBERSHIP MEETING

       10:00 am - Saturday, January 21, 2012

  A "MUST ATTEND" EVENT FOR DYSTONIA

          PATIENT'S & FAMILY CARE GIVERS

If you read my HOLIDAY GREETINGS bulletin, you've had prior notice of a must attend membership meeting for anyone suffering with dystonia of any type and their family or care givers.

We've had previous presentations from researchers trying to find the cause and a cure for Dystonia, the 3rd most common neurological disorder after Parkinson's & Essential Tremor.  Research progress is being made --- BUT at seemingly for us with dystonia, at a snail’s pace.

We've heard several times from Drs. Guy & Kim Caldwell of the WORM SHACK who've made a breakthrough, Dr. Yuqing Li, formerly doing follow-up studies on the Caldwell's findings at UAB but now heading a research team at University of Florida/Gainesville, and we toured the UAB

Movement Disorder Center as part of the May 2011 UAB DYSTONIA SYMPOSIUM.

If you had your eyes open during that UAB tour, you recognized that

DYSTONIA RESEARCH was not a separate unit within the Movement Disorder Center. 

Dr. David G. Standaert, PhD, MD, head of the CNET Center we toured soon thereafter decided to establish the DYSTONIA RESEARCH ACCELERATION PROGRAM within CNET...starting with recruiting a leading dystonia researcher.  THE TASK HAS BEGUN.....

Dr. Karen Jauarajs (pronounced "Yanna-rice") joined UAB in November 2011 for the

specific task of building the UAB Research Acceleration Program, a separate division with

the CNET center we toured at UAB.

Dr. Jauarajs, accompanied by Karen Tully, director of Community Outreach under

Dr. Standaert at UAB, have accepted our invitation to speak to DSGA at the

January 21, 2012, regular meeting.

Dr. Jauarajs will give us a little visionary "research news".

She is well published on Dystonia Research and meets the high standards set by

Dr. Standaert to "head up the separate Dystonia Research Acceleration program at UAB."

The meeting begins at 10:00 am at our regular meeting site in 2nd floor classroom at

LakeShore Rehab Hospital....park in front, enter thru main entrance,

go through the reception area, take a left & an immediate right to the elevators,

punch Floor #2, exit to the right toward the cafeteria

and just before reaching the cafeteria the meeting room door is on the right.

We have a number of new members & newly diagnosed dystonia patients

whom we expect to attend, but we need your support.....and you need to

meet both Dr. Jaunarajs and Kate Tully.  Kate has been most helpful in assisting

DSGA members with appointments, etc. at UAB and

has displayed an ability to get past "gate keepers".

This quality of speaker deserves our attendance.

Let's fill the place up!!!!!  The subject should be "uplifting and NEW".

Please R.S.V.P. to klwmgw216@aol.com a YAY.

NAY's will only be accepted as "your loss".

Refreshments will be served.

Ken L. Williams, Volunteer Director

Dystonia Support Group of Alabama

Chapter of DMRF

Associate of NSDA & NSTA

2012 - First meeting of the New Year - January 14, 2012

Happy New Year to all of you!!!  I hope 2011 left in a nice way for you and I hope and pray 2012 is a nice year for everyone!!!

As you have probably figured out, I am reminding you of our next meeting scheduled for Saturday, January 14.  As usual, we will meet at Covenant United Methodist Church located on 3610 West Main Street, Dothan, Alabama.  We will meet in room 116 in the CLC.  We will have signs up to help show you the way to the room.  Nothing is scheduled, except to hear how everyone is getting along. 

We will begin gathering around 9:30 am and begin the meeting around 9:45 am so that we will be out by 11:00 am or so. 

Please RSVP so we will know how many to expect. 

We hope to see everyone!!!

Sincerely,

Tim and Virginia

MONEY results from the Dystance4Dysonia 5k Run on 9/24/2011 in Dothan, Alabama and corrected day for the Holiday Social in Bimingham, Alabama

First, the Annual Holiday Social will be on December 10, 2011 at the Lakeshore Hospital in Birmingham, Alabama.  It will begin at 11:30.  It is covered dish, so you know there will be some mighty good food there and even better fellowship.  Please send an RSVP to Ken Williams at klwmgw216@aol.com  Due to this, there will not be a meeting in December for DSGA in Birmingham or in Dothan.  So, we hope to all of you on the 10^th!!

Now for the results of the Dystance4Dystonia 5k Run in Dothan, Alabama on September 24, 2011.

We raised . . .

$14,523.00!!!!

This will go towards Dystonia research by way of the Dystonia Medical Research Foundation.  But, there is more news about the monies raised.  There is a donor thru DMRF that is matching new monies raised from (I believe) August through December 2011.  So, this means we will have been responsible for raising more than $22,000.00 for research! 

Is that not fun news!!!!!!!  So, we also owe a huge thanks to all that participated with the run in September.  Whether you gave financially, spiritually or physically, we say thanks.  Also, thanks to the donor that is matching new funds!  That makes it all better!

So, for now, have a wonderful Thanksgiving and Christmas.  Be very careful in all of your travels.  Love your family and friends.  That is just one thing that is very special during this time of year. 

Talk with you later!!!

Troy University Radio and next Dystonia Support Group meeting in Dothan - 11-12-2011

Just some short notes about “goings ons” in the Dystonia Support Group of Alabama world!!  But, fun stuff!!!

First, Tim will be on the Troy University Public Radio, WTSU 89.9 (FM), tomorrow, October 19, 2011 from approximately 3 until 3:30.  Dr. Chan Roark, new found friend through Dystonia, has invited Tim to participate in a discussion concerning Dystonia.  Long story short with Chan, she is the one that found Dothan’s Support Group by way of the Dystonia Dialogue magazine while in Colorado with a friend that has Dystonia.  Confused now!?!?!?  Seriously, Dr. Roark teaches at Troy University and we owe her a huge thank you for helping get the word out about Dystonia.  Here is the web site for WTSU:  http://wtsu.troy.edu/  .  There is a tab for on line listening, so maybe you can listen to the discussion. 

Also, the Dothan Support Group will be meeting on November 12, 2011.  This is the second Saturday in November.  We want to have this meeting so we can reach out to all the new contacts we made during the run on 9/24/2011.  We are also hoping that at that point we will have the final numbers for the run, which looks to be fantastic!!!!!  Please mark your calendars for this date and get ready for the FUN NEWS!!!  I will send out a reminder before that date.

There will be a Christmas Social in Birmingham, but right this second I do not know the date.  As soon as I get a date, I will get that to you.

Have a nice week and we hope to see all of you on November 12, 2011 in Dothan and at the Christmas Social in Birmingham.