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
The next Dystonia Support Group of Alabama - Birmingham
meeting will be January 21, 2012
MARK IT ON YOUR CALENDAR NOW
Nothing's finalized as yet, but I'm hopeful we can recruit the new
Director of Dystonia research at UAB, Dr. KAREN JAUNARAJA.
The "key" is in how many seats we can fill to justify her
giving us her time on a Saturday.
I happen to know there are great things planned due to the
UAB Dystonia Accelerated Research project,
to which many of us have given a 3 year pledge
and I am sure she would be happy to talk about some of these plans.
RSVP as soon as you can and we will see you then!!
Ken L. Williams - DSGA
***CORRECTED DATE***
FOR THE . . .
HOLIDAY SOCIAL
December 10, 2011
HealthSouth/Lakeshore Rehabilitation Hospital
3800 Ridgeway Drive (just off Lakeshore Drive),
Birmingham, AL 35209
11:30 am
Covered dish
PLEASE RSVP TO:
KEN WILLIAMS at Klwmgw216@aol.com
SEE YOU THERE!!!
You are invited to:
Dystonia Support Group of Alabama's
Holiday Social
December 3, 2011
Time: 11:30
Covered dish
lots of fun and GOOD FELLOWSHIP
(and even better)
GOOD FOOD!!
HealthSouth/Lakeshore Rehabilitation Hospital
3800 Ridgeway Drive (just off Lakeshore Drive),
Birmingham, AL 35209
Please RSVP: Klwmgw216@aol.com
SEE YOU THEN!!!
Dystonia Support Group of Alabama
Birmingham, Alabama meeting
October 15, 2011
Mark your calendars for the meeting in Birmingham on October 15, 2011.
There will be many things to discuss. There will be some delicious refreshments along with
enlightening fellowship and discussions concerning dystonia.
If possible, please attend! You will not be disappointed.
Be on the lookout for the release of the results of the
Alabama's 2nd Annual Dystance4Dystonia 5k Run
that was held in Dothan, Alabama on September 24, 2011.
It was a complete success and would not have been possible without
the support of everyone involved with the
Dystonia Support Group of Alabama.
Meeting Basics for Birmingham, Alabama . . . .
DSGA-Birmingham will meet the third Saturday of every month at 10:00 a.m. in space provided by HealthSouth/Lakeshore Rehabilitation Hospital
located at 3800 Ridgeway Drive (just off Lakeshore Drive),
Birmingham, AL 35209.
We are getting ready for the:
2nd Annual Dystance4Dystonia 5k Run/1 Mile Fun Run Walk on
September 24, 2011
Dothan, Alabama
Here is a link for the registration form:
http://www.DMRFevents.org/event.php?455233
Please mark your calendars for this big annual event. There will be booths with all kinds of information about Dystonia and its many forms. There will be plenty of Dystonia patients that will be willing to talk with anyone along with family members. There will also be lots of prizes for all the participants and there will be great food for all the runners and walkers!!
The run will begin at Covenant United Methodist Church in Dothan, Alabama at 8:00 am with registration beginning around 7:00 am. If you register on line, please check in with
registration before 8:00 am. If you are not able to walk and/or run,
your donation would be greatly appreciated. All of the proceeds will go to the Dystonia Medical Research Foundation and is tax deductible.
Last year we had runners ranging from North Georgia to Florida with many from throughout Alabama. It was a very successful run, raising over $10,000 for research!
If you or someone you know would like to be a sponsor, please contact us at DothanDystoniaSupportGroup@gmail.com
and we will forward all the necessary information to you to become a sponsor.
We will have a Dystonia Support Group meeting on Saturday August 13, 2011 at
Covenant United Methodist Church. There will be signs up to direct you to the meeting site.
Please feel free to attend the meeting. We will be discussing the run, but we will also be
listening and talking about how everyone has been doing. That is our main interest!!!
Have a great day and we look forward to seeing you at the
Dystance4Dystonia 5k Run on
September 24, 2011 in
Dothan, Alabama
Upcoming Events - Birmingham Group
Next Meeting: SATURDAY - 11:00 AM - JULY 16, 2011
ANNUAL SUMMER SOCIAL
Lakeshore Location
Mark your calendars for July 16, 2011 for the ANNUAL SUMMER SOCIAL in Birmingham, Alabama. It will be a covered dish meal with each person's favorite specialty. It is always a lot of fun to visit over a wonderful meal with the people we see each month. No strings attached to the attendance, except a covered dish and a smile on each face!
RSVP when you get your email OR go on and let us know that you will be there and how many guests will attend with you!!
R.S.V.P. TO Klwmgw216@aol.com
M
ark your calendar for September 24, 2011 for the Dystance4Dystonia 5k run/1 mile run/walk in Dothan, Alabama. Last year, we raised over $10,000 for the Dystonia Medical Research Foundation, and successfully accomplished the first large fundraiser EVER in the State of Alabama for DMRF.
There will be more information in the near future concerning the run, so be on the look-out! It takes a group effort to be successful and we know you will help! If you would like more information, please contact us at DothanDystoniaSupportGroup@gmail.com!
So, until July 16 and September 24, have a wonderful summer and I look forward to seeing and hearing from all of you!!
Ken Williams, Volunteer Director
Dystonia Support Group of Alabama
Chpr of DMRF