January 21, 2012 Meeting

January 21, 2012, Meeting Report

This was a great meeting to kick off 2012.  There were great speakers with great attendance and it showed what Dystonia Support Group of Alabama (DSGA) is all about.  Thanks to all of those that attended.  The weather was not good and it kept some members from attending, but even with the weather, the attendance was great.  So, thanks again to those that were able to attend.

Kate Tully, Director of Major Gifts and Community Relations for University of Alabama at Birmingham’s (UAB) Department of Neurology, kicked off the meeting with an explanation of the UAB goals in both Dystonia Research and clinical treatment of Dystonia patients of all types.  Kate as some of you may recall was a major force behind last April’s UAB/DSGA Dystonia Symposium, which drew a full house for a half-day of doctor presentations and a tour of the Center for Neurodegeneration and Experimental Therapeutics (CNET) laboratories.

Kate introduced our feature speaker, Dr. Karen Jaunarajs.  Dr. Jaunarajs is a post-doctoral fellow who works under the direction of Dr. David Standaert.  Dr. Standaert is currently Chairman of the Department of Neurology, Director of the Division of Movement Disorders, and Director of CNET.

Dr. Jaunarajs was very enthusiastic about her goals at UAB.  One of her objectives is to pursue novel research in Dystonia that may ultimately lead to drug discovery.  She is widely published and a devoted researcher with a golden background for her new job.  Dr. Jaunarajs’ particular aim is to focus on the underlying causes of Dystonia with hopes of uncovering new targets for drug therapies.  Within the UAB Division of Movement Disorders, several other doctors, including Dr. Natividad Stover, Dr. Harrison Walker and Dr. Erwin Montgomery, are conducting clinical research on Dystonia that compliments the laboratory work done by Dr. Standaert and Dr. Jaunarajs.  Combined, UAB’s aim is to advance translational research, bringing new potential drug therapies from the laboratory to patients in the clinic as quickly and safely as possible.

This is proof there is no doubt UAB has come a long way in the short time since Dr. Standaert was first recruited to head the UAB CNET 6 years ago.

Medical Research takes “money” and getting the attention of the National Institutes of Health is an ongoing, serious task at UAB.  That means building a local donor base — then writing for grants from major donors.  Some of you have already given generously to Dystonia research at UAB.  If you haven’t donated and want more information, please do so by emailing Ms. Kate Tully at ktully@uab.edu .

April and tax time is a great reminder to me personally of the monies I was able to donate in 2011.   Whether the gift is to Dystonia Medical Research Foundation (DMRF), the Alabama Dystonia Scholars program, or UAB’s Dystonia research project, it is tax deductible.  I’m not exactly thrilled with the way our Alabama legislature or our Congress “spends my tax dollars” so at least I know I’ve kept some money out of “their hands” when I donate to a DSGA Medical Research cause and earn a deduction from both Federal and State Income taxes.

Speaking of “giving” to a worthy cause, DSGA’s Treasurer Dick Darden recently mailed out invoices for the DSGA dues of $35 annually plus whatever else you may wish to donate to a Dystonia project we (DSGA) help fund.  Please send in your dues as soon as possible.  Thanks for the attention you give this bit of information.

A big thank you to Tim and Virginia Hornsby, Outreach Directors, who “oversees” DSGA’s satellite support group in Dothan and their daughter Rebecca Sharp.  This group meets the second Saturday of each month.  This group reaches those who live in (and not limited to) Southwest Georgia, Northwest Florida, and Southeast Alabama.  This group of Dystonia patients and families can’t always attend DSGA Birmingham monthly meetings due to the travel distance.  They organized a successful 2nd Annual Dystance4Dystonia 5k run last September and raised over $14,000 for DMRF which will be used for Dystonia medical research.  A portion of the $14,000 qualified for matching gifts from a major donor, which ran the total amount raised by that event to some $21,000 . . . for which DSGA got full credit.  You, too, can pull off such an event.

Add some $6,000 in donations from the Becky Burns family in Texarkana, Texas.  This amount was raised simply by the Burns family suggesting a DMRF donation in the obituary of Becky’s husband and Clay’s father’s untimely death and burial in Trussville, Alabama.

I’m convinced the cause and cure for Dystonia won’t happen in my remaining lifetime, but we must think of the next generation(s) and do what we can.

OK . . . that’s the last time I’ll mention fund raising THIS YEAR.  But thanks for listening and hopefully donating when you pay your DSGA dues.  Also, with just a little effort and dedication, use your skills and initiate your own Dystonia medical research fund raisers.  Everyone involved with DSGA will be more than happy to help you and support your efforts.  Just let me know your thoughts and we will do what we can to get that ball rolling!!!!

The next Birmingham meeting is Saturday, February 18th at the same location.  We’ll have another GREAT PROGRAM lined up for you.  Also, the next Dothan meeting will be on Saturday, February 11.

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

PS:  Anyone receiving this email who does want to continue to receive communications from DSGA, just email me Klwmgw216@aol.com

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December 2011 Update

HAPPY HOLIDAYS
The research of Dystonia—-cause, treatments & a cure— is indeed SUNNY —- and there is cause to think of the future of Dystonia patient’s being “brighter” than it’s been in years.

AND THAT’S SOMETHING WE CAN ALL BE THANKFUL FOR AS WE BREEZE THROUGH THIS HOLIDAY SEASON AND EMBARK ON A NEW YEAR.

We can be THANKFUL that Dystonia Medical Research Foundation (DMRF) is one of the Dystonia Coalition leading the way toward earlier diagnosis, better treatments & someday a “cure” for this dreadful & mystical disease.

We can be THANKFUL for the money’s we’ve been able to raise for Medical Research through DMRF “plus” the financial support of many Dystonia Support Group of Alabama (DSGA) individuals for other critical Dystonia Research, including:

University of Alabama/Birmingham

DYSTONIA RESEARCH ACCELERATION FUND

UAB & Dr. David G. Standaert has recruited Dr. Karen Jaunarajs as lead researcher for Dystonia.  Dr. Jaunarajas is widely published on Dystonia & other neurological movement disorders.  Everyone is expecting great things from her as she builds this research center focusing only on Dystonia.

University of Alabama/Tuscaloosa

(Caldwell’s WORMSHACK)

Drs. Guy & Kim Caldwell continue their progress and “we” continue to support Alabama Dystonia Scholars to work during summer break on Dystonia Research.

University of FL/Gainesville

Yuqing Li, PhD, a researcher from UAB has been recruited by University of Florida and is making continued progress on Dystonia Research in that facility.

University of TN/Memphis

Dr. Mark Ledoux, whom has spoken to us several times is making great progress with his Dystonia Research projects.

The sun shines brightly over many Dystonia patients & family care givers because of the great MEDICAL RESEARCH DONATIONS by numerous DSGA members….who have as individuals helped fund many of these projects.

It’s the “BEST CHRISTMAS GIFT” you can give to yourself and others. So, a big THANK YOU to everyone!

The next DSGA 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.

Ken L. Williams – DSGA

October 2011 Update

Just want to be sure everyone is aware of the change in the date of the Holiday Social in Birmingham for DSGA.  Due to an unavoidable conflict, the date is December 10, 2011 at 11:30 at Lakeshore Hospital in Birmingham, Alabama.  You can go to the “Upcoming Events” and get the particulars.  I do ask you to please email Ken Williams at Klwmgw216@aol.com  with your RSVP as soon as you can.

Also, just to let everyone know that we have a final dollar amount raised on September 24, 2011 in Dothan, Alabama.  It was Alabama’s 2nd Annual Dystance4Dystonia 5k Run/1 mile Walk.  We successfully raised $14,523.00 that will go towards Dystonia Research through the Dystonia Medical Research Foundation.  Thanks to everyone for all of their support in this endeavor!!  It is a hard job, especially the week before the run and it could not have been done alone!!!  So pat yourself on the back for a super money raiser and more than that, an awareness raiser!!!!

There will be no meeting in November for the Dystonia Support Group of Alabama/Birmingham in November.  Our regular DSGA/Birmingham schedule calls for November-December meeting to be combined in the Annual Holiday Social the 1st Saturday in December, so mark your calendar for 11:00 a.m. on Saturday, December 3, 2011 for the Holiday Social in Birmingham.  This avoids interference with Thanksgiving and Christmas each year.

One of the directors will provide the ham & turkey.  Everyone is asked to provide various side-dishes, desert and beverages.   When we begin filling in the menu, we’ll send a newsletter asking for your attendance to let us know what side-dish, desert and/or beverages you want to bring.

We have several new members since the August 2011 meeting.  They are looking forward to attending their first DSGA meeting, meeting everyone and sharing information about Dystonia, dystonia treatments, research news and plans for 2011.  Also, the October 15, 2011 meeting concerning meeting plans and duty assignments for awareness, outreach, support, speakers and agendas will be informally discussed.

***  DSGA member, Richard, underwent Part 1 of Selective Denervation Surgery for his Cervical Dystonia.  His    wife, Janice, reports the surgery went well and Richard is anxious to get Part 2 of the Surgery completed.  Their doctor is Dr. Carlos Arce, Neurosurgeon at University of Florida/Jacksonville. Dr. Arce was trained on this procedure by Dr. Claude Bertrand of Montreal who developed the technique in the late 1980’s.  Since then, Dr. Arce has completed thousands of the procedures.  I was one of his early surgical patients when I had my 2 Selective Denervation procedures in Nov 1989 and January 2001.

Richard’s doing extremely well.  According to Janice, his head is straighter.  He has less pulling and pain, but anxious to get part 2 scheduled.  Richard?s job requires him to do a lot of driving on a weekly basis, so this was very important for him to be able to maintain good posture and no neck spasms.

***  James of Northwest Florida who attends the Birmingham and Dothan Support Group meetings opted for Deep Brain Stimulation Surgery. He had his initial bilateral DBS surgery in October and part 2 is scheduled for mid-November when the surgeons will implant the leads and battery.  They will be set on “low” and then gradually increased to optimum results.

He reports Part 1 (the most invasive) went well and he has not had any significant side-effects.  He is, obviously, anxiously awaiting Part 2.
***  Clay, son of Becky, from Texarkana, Texas, a long-time loyal DSGA member, who had Deep Brain Stimulation surgery at UAB about 3 years ago, reentered UAB at 5 a.m., 10/24/11.  At that time, the doctors had to replace a dead battery.  If you want to keep current with Clay’s “DBS journey” go to a dedicated web-site:
http://www.caringbridge.org/visit/clayburns/journal

If you choose, you can leave a personal message for Clay on this linked site.  This journal was setup by his sister, a former college student who spoke to our group many years ago while she was living in Birmingham attending college.  Several DSGA members have posted “notes” in Clay’s journal during his journey thru the initial surgery.

***  Side-note on Deep Brain Stimulation:  I can count 8 present & past DSGA members who initially learned about DBS at DSGA meetings.  It’s my understanding UAB now does 2 DBS surgeries a week on average.  Most of you remember Dr. Harrison Walker, one of the neurosurgeons at UAB who performs DBS procedures and also Mike Tapley, the local Medtronic representative.  Medtronic is the manufacturer of the DBS implant.  Among those patients that have undergone DBS at UAB is former member Brad from Tuscaloosa and active member Ramona of Huntsville.  Ramona has been kind enough to demonstrate her DBS implant by using the remote to turn the system off.  At this point her dystonia kicks-in which at that point, she then turned the unit on.  The “difference” is in a single word – DRAMATIC.  ***

***  Pat’s 92 year old Mother is in very poor condition.  Pat’s Mother lives next door and Pat is her primary care-giver.  Pat is also the care-giver for her husband Bill, who has had multiple cancer surgeries.  Pat should be awarded DSGA’s CAREGIVER OF THE YEAR award (if we had one).  Everyone please keep Pat in your thoughts and prayers.

***  Dothan’s (Birmingham’s Satellite Group) fund raising event, Alabama’s 2nd Annual Dystance4Dyatonis 5k Run & 1 mile Fun Walk, was a huge success according to preliminary reports by Rebecca, daughter of Tim and Virginia.  Rebecca was the organizer of the event.  The run was on September 24, 2011 in Dothan, Alabama.  The funds raised go towards DMRF’s Medical Research.  The first count shows more than last year?s amount (which was over $10,000) was raised in the September, 2011 event.  Also, any ‘new’ money raised in August until December, 2011, will be matched by a donor with interest in DMRF. So, the majority of the monies raised were matched, which could mean the event was responsible for more monies to go toward Dystonia Medical Research. We are can’t wait to hear just how much more!!!

HOPE TO SEE EVERYONE IN BIG NUMBERS AT THE HOLIDAY SOCIAL . . . . 11:00 AM, SATURDAY, DECEMBER 3, 2011 —-2ND FLOOR CLASSROOM IN MAIN BUILDING OF LAKESHORE REHAB HOSPITAL.  If you are bringing a covered dish, dessert or beverages, please arrive 15 minutes before the official starting time so the serving table can be completed before guests begin to arrive.

Looking for a charity to support with a tax-free donation to cut your taxes???? Look no further than: DYSTONIA MEDICAL RESEARCH FOUNDATION

REMEMBER:
any new monies donated now until December 2011, will be matched, so your donation could be doubled for the benefit of Dystonia Medical Research!!!

UNIVERSITY OF ALABAMA’S “WORM SHACK” of Drs. Guy & Kim Caldwell
University of Alabama-Birmingham’s ACCELERATED DYSTONIA MEDICAL RESEARCH FUND 

Contact Ken Williams at Klwmgw216@aol.com for information as to the tax ID numbers, to whom and what address to send your donation.

Until next time,
Ken Williams, Volunteer Director
Dystonia Support Group of Alabama
Chapter of Dystonia Medical Research Foundation

The 2011 Dystance4Dystonia 5k Runners’ Results

Alabama’s 2nd Annual Dystance4Dystonia 5k Run
Runners results

First, let me apologize for the delay in getting posting the results for Alabama’s 2nd Annual Dystance4Dystonia 5k Run we had on 9/24/2011 in Dothan, Alabama.  I found (after I had lost) the list of results with the times!  I am just glad I found them.  Dystonia Medical Research Foundation is still working on a final figure for the run, so you will just have to wait for the numbers, but I will tell you we are very proud of what we accomplished.  As soon as we get them, we will get them on the blog.

Now, I must say thanks to all the participants.  What we accomplished could not have been possible without all of you.  This is the list of the people that placed and their times.  I want to apologize right now if I have your name misspelled.  So, thanks to all, again, and we hope to see you again next year!!

Overall Female:
1. Katie Barrentine 25:31
2. Michelle Sheffield 28:06
3. Courtney Noon 28:36

Overall male:
1. Dave Durbin 21:13
2. Phillip Metcalf 22:34
3. Brent Cowen 22:49

10-14 yrs old
1. Cj Anderson 24:59
2. Austin Anderson 30:41

15-19 yrs old
1. Tucker Poppell 25:06
2. Joanna Hartzog 38:05
3. Brittany Hemphill 38:51

20-29 yrs old
1. Will Lurie 24:29
2. Jerrica Hall 29:46
3. Natalie Lurie 30:24

30-39 yrs old
1. Kristi Hickey 28:58
2. Mike Tapley 29:05
3. Robert Shefieeld 29:09

40-49 yrs old
1. Bobby Jesswein 23:40
2. Johnny Lingo 24:52
3. Malissa Sanders 28:55

50-59 yrs old
1. Joey Harvey 22:57
2. Kingsley Paquette 24:01
3. Ken McGinity 24:58

60+ yrs old
1. Ralph Wilson 25:49
2. Henry Reynolds 27:33
3. Carl Griffler 28:57

The 2011 Dystance4Dystonia Run

SUCCESSFUL Dystance4Dystonia 5k Run/1 mile Fun Walk  9/24/2011  Dothan, Alabama

Good afternoon to everyone!!  I am starting this newsletter on Saturday, September 24, 2011, at about 4:45 pm.  I may not finish it and get it posted until later, so if you are wondering why you have not heard from us,

let me say WOW!!!!

This morning, we had the 2nd Annual Alabama Dystance4Dystonia in Dothan, Alabama.  Really this all started about a year ago, right after the first ever run of this sort in Alabama.
Last night, at 6:00 pm, a group met at Covenant United Methodist Church, and finished stuffing runners? bags, blew up balloons, tied balloons onto sticks, sorted t-shirts, and any other job we could get done before this morning.  Well, of course before we knew it, it was time to get ready and go back to the Church for the big day!  And boy, oh boy, was it ever a big day!
We got to the Church about 6:00 am and when we got there, things were already hopping!!  Before we knew it, it was about 7:45 and the run was getting ready to get started.  From the information I am getting, we had about 105 runners/walkers.  Last year we had about 65 (+/-).  We had about 35 to pre-register and last year we had about 10 to pre-register.  As we were watching the pre-registration numbers go up, we sort of panicked and rounded up bags from last year, in case we had more than 125, which is the number we were guessing about.  YEAH, we know, we were cutting that close.  You should have been here.  You would have been rounding up left overs from last year, too!!  But, as we have already discussed, what a wonderful problem to have, especially when it is the 2nd run.  We are very young and hope to get better with age!!  But, back to today?s run!  We made many new friends and got word out concerning Dystonia.  In fact, I am going to share a story that was revealed last night.  A woman that lives in Dothan was visiting in Colorado with her friend, which has Dystonia.  Her friend gave her a copy of the magazine, The Dystonia Dialogue, and asked her to read the magazine and become more educated on the topic of Dystonia.  Well, she saw in the magazine about the Dothan Dystonia Support Group.  She came home to Dothan, contacted Rebecca immediately, and became super involved in the run today!  Now, how about that?!?!?  Be from Dothan, visiting in Colorado, and find a support group by way of a magazine that was being read IN COLORADO!!  I suppose the reason for the story is that we never know where we will be or why we are in a particular place, but there are reasons, and you should act on them.  She was a great help and we enjoyed visiting with her.  She did this in honor of her friend, and we hope he realizes what a good friend she is!!

Everyone had smiles on their faces the entire time.  Everyone helped out!  No matter how large the job or how small the job, they all add up to being a complete success and it could not have been done without all of the assistance, be it physical, mental or in absence.  We know if you were not there, you were thinking about the endeavor we were trying to accomplish, and accomplish, we did!!

We will be getting numbers together and figured out in the next week or two.  As soon as we hear the final tally, we will get the word out.  However, I will say, I do not believe anyone will be disappointed!!

Again, just like last year, the leftover ice, water, and food was taken to The Ark.  For those of you not aware, The Ark is a local run ministry in Dothan, Alabama for the homeless.  I spoke with my son this afternoon and told him about taking the leftovers to The Ark after the run.  I told him just how good it makes you feel to do a good thing and then you do a better thing after the good thing.  I know that sounds odd in writing, but it does make you feel good to do good things by way of another good thing.

So, for now, I am going to shut this computer down.  Tim and I will be eating an early supper and probably hitting the hay a bit earlier than usual.

Thanks so very much to all of you that helped in whatever way you helped.  It could not be done alone, and you were a part of it.

OH, there are pictures and we will get them out in some way later!!

Have a great day and we will be in touch later!!
Dystonia Support Group of Alabama/
Dothan Dystonia Support Group

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 pcangel1102@aol.com 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

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