August 20, 2011

Dr. Natividad Stover, MD of the Movement Disorder Center at University of Alabama-Birmingham (UAB) was the feature speaker at the August 20th meeting at the Dystonia Support Group of Alabama- Birmingham (DSGA) meeting.  Some of you heard her address at the April UAB Dystonia Symposium, but the DSGA regular meeting offers the best chance for members to go “one on one” with a Dystonia specialist.

Kate Tully, who works with Dr. David G. Standaert, MD, PhD, gave a short version of the “newly announced” Dystonia Research Acceleration program for which “seed monies” are now being donated.  Several DSGA members are notable among their presence as donors to this expanded UAB research program devoted exclusively to Dystonia.

Quality and prestige are always followed by quality and prestige.  In the case of UAB’s Movement Disorder Center, it all began with recruiting Dr. Standaert and the resulting National Institute of Health (NIH) grants that launched UAB’s neurology department into the growing, active Dystonia Treatment and Research Center that exists at UAB today.  Dr. Standaert’s standing in the world’s medical society is a major draw of doctor and researcher talent, for which we can all be thankful.

Janice Hawkins just emailed me following their return from Jacksonville, FL where Richard underwent Selective Denervation Surgery, a minimally invasive surgical procedure that’s been very successful in helping Cervical Dystonia patients for many years.  In fact, this writer underwent the procedure by Dr. Carlos Arce who was one of the first of a handful of neurosurgeons trained in the procedure by the renowned Dr. Claude Bertrand of University of Montreal who developed the procedure in the 80’s.  Excerpts from Janice’s email:

“Glad to report we are back home.  Richard’s surgery by Dr. Arce went very well.  Richard did great and already the pulling has stopped.  We just got home from Jacksonville, FL late last night and today we’re both hung over from the strain of being gone so long, although Richard is very sore from a 5 1/2″ incision on the right side & 4″ on the left even though the incision was peripheral.  Dr. Arce also gave Richard Botox injections across the shoulders.  We are to return to visit Dr. Arce in about 3 months.  Dr. Arce is wonderful and so pleasant.”

There will be no DSGA-Birmingham meeting in September as it conflicts with those attending the Dystance4Dystonia 5k Run/1Mile Fun Run fund raising event in Dothan, Alabama on September 24, 2011. Spurred by the direction and vigor of Rebecca Sharp, daughter of Tim & Virginia Hornsby, last year?s event raised $10,000 for Dystonia Medical Research Foundation (DMRF) (compared to the $2,000 DSGA donated to DMRF’s Medical Research in 2010  ….. a figure which does not include monies raised by DSGA individual donations or their solicitation of grants from corporate givers to DMRF)

The regular DSGA October 15th meeting will be a succession planning event as both our leader, Pat Wyatt, who’s a major care giver for her aged mother & Bill’s recovery from his 6th major cancer surgery, and this writer who turns 85 years old in October and after 6 years as “chief communicator & meeting planner” just can’t sustain the demands of his job at the present level of activity.

Pat has again arranged for DSGA to have a booth display at the Shelby County Fair.  Pat is seeking volunteers to attend the booth as part of our AWARENESS PROJECT, especially during the evening sessions of the Fair when there is the most traffic in the display area.  Please email Pat at and let Pat know the time you can devote to this project.

Hope to see you at the October meeting, and I urge you to participate in the Dystance4Dystonie Run, either as a runner, walker, worker, or just a donation.

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

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