May 21, 2011

Rebecca and Virginia attended the Dystonia Medical Research Foundation’s 6th John H. Menkes Children and Family Dystonia Symposium in Chicago on August 19-21, 2011.  The symposium was full of information from all aspects of Dystonia.  Rebecca attended an organizational meeting and shared her experiences she has encountered setting up a Dystance4Dystonia 5k Run along with her success in organizing the run.

She and Virginia listened to many physicians speak about many aspects of Dystonia, from the support of family to the research side.

As they have said, it was a whirlwind visit to the ‘windy city’ of Chicago, but a well worth it trip.  So glad they could make the Symposium.  They will be sharing some of their experience at an upcoming meeting.

Dothan will be meeting on Saturday, September 10.  This will be one of the last meetings before the scheduled run on September 24, 2011.  There will be a meeting on Friday, September 23, 2011 to get things set up and ready for the big Dystance4Dystonia 5k Run!  So, get ready for the big event.  We want to say thank you to all of you that have helped and are going to help.  It is not something you can do alone!!  So, until later, have a great week!!

NO MEETING IN JUNE – next meeting is July 16, 2011 – ANNUAL SUMMER LUNCHEON

Thanks to a nice turnout of 22 people at the May 21st meeting and an excellent presentation by Dr’s. Guy & Kim Caldwell of the Univ of Alabama-Tuscaloosa Biology Dept who are passionately engaged in Dystonia research using a number of graduate students, doctoral students & undergraduate students working in THE WORM SHACK.

Also, it was nice to again have Nathan Roberts, one of our Alabama Dystonia Scholars who at this moment is at work in the Caldwell Research Lab on Dystonia research.  The 2nd scholar for 2011 was home in Louisiana at the time of our meeting due to the tornado evacuating his dorm, but I understand he’s now back on campus & at work.  5-6 individual donors have supported the U of A Alabama Dystonia Scholars program every summer since 2006.

Thanks to the Dr’s Caldwell and to Nathan Roberts for the informative program about this important project.

Armed with info learned thru DSGA meetings, Richard Hawkins and his wife, Janice, have met with Dr. Carlos Arce, neurosurgeon at the Univ of FL-Jacksonville and one of the preeminate specialists in Selective Denervation Surgery for Cervical Dystonia in the USA & Canada.  Richard has been evaluated by Dr. Arce as an excellent candidate for the surgery and they are anxiously awaiting word as to the date the surgery will be scheduled.   (Editors note:  Dr. Arce operated on me in Dec 1989 and again in Jan 1991 with complete relief of all spasms & pain, albeit back then they didn’t realize the surgery would not completely correct anticolis which is what I had; hence, I’ve had to supplement that with Botox to “keep my head straight”).  Dr. Arce is one of the great pioneers in the procedure which is only minimally invasive.  Richard will be in surgery 1 day with a 1 day stay in the hospital, but must then stay in Jacksonville for about a week until the staples can be removed from the incision(s).  GOD SPEED…Richard!

Other Dystonia Research in Alabama:

Following the departure of Dr. Yuqin Li from UAB research to the new Dystonia Research Project at the Univ of FL-Gainesville plus the huge success of the UAB DYSTONIA SYMPOSIUM we held on April 8th, Dr. David G. Standaert, MD, PhD and head of the Neurological Movement Disorders program at UAB has embarked on an expansion program just for DYSTONIA at UAB.

The UAB Movement Disorder Research program is now in position to expand to have a dedicated DYSTONIA RESEARCH unit as an expansion of some of the research projects we had the privilege of touring during the Symposium.

The UAB DYSTONIA RESEARCH ACCELERATION FUND is being established to:
  -Recruit up-and coming post-doctoral and pre-doctoral researchers
-Pursue the most promising novel research projects in Dystonia
-Accelerate ongoing research projects aimed at developing new treatments and hopefully a cure.

Work of this kind cannot be funded through traditional NIH-style R01 or other research grants, so a separate LEADERSHIP GIVING FUND TO GENEROUS DONORS RAISING $75,000 OVER 2011, 2012 & 2013 ($25,000 EACH YEAR) is necessary to jump-start the program and thence attract other grants.

In layman’s terms, this Dystonia Research Acceleration Fund is “seed money” necessary to attract “big bucks” to have a full-fledged, Dystonia dedicated, UAB research program.

2 or more philanthropic persons who attended the Symposium have already pledged $15,000 toward the $25,000 needed for 2011 and pledged $12,500 for each of 2012 and 2013 years.

Kate Tully is Associate Director of Leadership Giving.   Kate will be traveling the state calling on some of you to become part of this important “local” research project.  If Kate calls on you, I hope you will “hear her out” and contribute whatever you can to getting this “show on the road”.

In keeping with DSGA’s normal schedule, there is no meeting in June.  June & July are combined each year into a Summer Social scheduled for 11 am, Saturday, July 16th at the 2nd floor classroom in Lakeshore Rehab Hospital in Birmingham, our regular meeting space.

Gov. Robert Bentley met with Bill & Pat Wyatt and their grandson to declare the week of June 5 – 12 as ALABAMA DYSTONIA AWARENESS WEEK.  This is an excellent opportunity for you to get an article in your local newspaper about DYSTONIA as part of our AWARENESS mission.

We hope DMRF will publish a picture of the Wyatt’s with Gov. Bentley signing the proclamation in his office in the next DMRA Dystonia Dialogue magazine.

We hope each of you and your families have a great summer.  Details will be outlined later about the regular meeting on August 13th…..and then the September B’ham meeting will be canceled in deference to the DISTANCE4DYSTONIA 5k run & 1k walk Rebecca Sharp (Tim & Virginia Hornsby’s daughter) is so busy working on to be held in Dothan on September 24, 2011…..details to follow.

IF YOU HAVE NOT PAID YOUR DSGA DUES FOR 2011, PLEASE MAIL A CHECK (MINIMUM $35) TODAY TO:

Richard Darden, DSGA Treasurer
First Sunbelt Properties, Inc.
2 Office Park Circle – Ste 1
Birmingham, AL 35223

We also need to raise donations for our commitments to DMRF Medical Research projects, one of the main responsibilities of a support group.  Make those checks payable directly to Dystonia Medical Research Foundation and mail them to either Richard Darden or myself at 216 Oakmont Circle, B’ham, AL 35244.

Ken Williams, Volunteer Director
Dystonia Support Group of Alabama
Chptr of DMRF

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