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Check out our Member Activities on our Awareness Page to see what all we're doing to promote awareness of Dystonia!


JULY 19, 2008 - 11:00 AM

SUMMER SOCIAL! DON'T MISS IT!

Our Social Luncheons are some of our best-attended meetings.  We believe it is because these Socials allow us to simply spend time with one another sharing stories and sharing a meal in which we all participate.  Ken and Maxine will be supplying the barbecue (THANKS!) and the rest of us can bring the "fixins".  Please e-mail Pat with your contribution.  She'll be keeping the list of what's needed.  Here are some ideas:  potato salad, slaw, baked bean, casseroles, deviled eggs, desserts, and drinks.  HOPE TO SEE YOU THERE!


Those attending the May 17th meeting led by Pat Wyatt came away with lots of updated information on this mystical disease called dystonia.
 
In keeping with our summer schedule, the JUNE 14TH MEETING will be COMBINED with a JULY 19TH "Summer BBQ Social".  This writer is furnishing the BBQ and members should bring the "trimmings"; i.e. potato salad, fruit salad, casserole's, chips, drinks and desserts.  Please email Pat at     pcangel1102@aol.com  to tell her how many family members will join you and what "trimmings" you'll bring to the table.
 
See you Saturday, July 19th - no June meeting
 
GOV RILEY MAKES PROCLAMATION:
Pat and Bill Wyatt visited the Alabama Governor's office for the signing of the annual proclamation of June 1 through June 7, 2008, as DYSTONIA AWARENESS WEEK.  This was sent as a Press Release to every daily & weekly newspaper in Alabama.  We hope you read it in your local paper.
 
AWARENESS PROJECTS:
Leading up to the June Awareness Week, we redesigned the BOOKMARKS, printed 35,000, purchased 150 add'l Counter-top Lit Holders and obtained email permission from 162 Alabama public libraries to send/deliver to them a kit of lit holder w/200 bookmarks for display.
 
Pat & Bill Wyatt will be attending an American Legion convention and will distribute bookmarks at that event.
 
Numerous members personally delivered the library kits:
    Kim Lowe                     St. Clair County  (7 libraries)
    Sister "K"                     Cullman County (6 libraries)
    Tim Hornsby                 Several counties in SE Alabama  (18 libraries)
    Josefine Spindle            Etowah County (3 libraries)
    Pat Wyatt                       Shelby County  (12 libraries)
    Ken Williams                Jefferson County (39 libraries)
    Janet McCoy                Auburn, Sylacauga & surrounding cities (6 libraries)
    Betty Parker                  Alex City & surround areas (5 libraries)
 
Others were mailed to the librarian at each library who responded to our email saying "YES" --- Montgomery, Mobile & Huntsville used their courier service so we could bulk ship those kits to one location.
 
PELL CITY BLOCK PARTY - We all owe a "vote of thanks" to Ken Moore who single handedly took care of setting up the DSG Display Booth for the Pell City Block party on June 6th.  Rita was still recovering from her recent surgery!!! But Ken handled it all.
 
SENIOR HEALTH FAIR - BROOKWOOD -  We opted "NOT" to spend $500 to again rent a booth at this event held May 28th.  The last 2 years we had a booth display but success was questionable, so Pat and I made the "fiscal decision" to use that $500 on
our rather large printing, lit holder purchase and postage/distribution expenses associated with the library project.
 
ALABAMA DYSTONIA SCHOLARS -  The COVER STORY on the Univ of Alabama web site refers to the designation of 2 very, very deserving honor scholars who were awarded a $20,000 research grant (The Worm Shack project proceeds) to work summers on Dystonia research in the Caldwell Lab at the UofA during 2008 and 2009. 
 
Undergraduate student Emily Kay Woods is a freshman majoring in biology, graduated from Oak Mountain High School in 2007 in Shelby County and a student of the International Honors Program.
 
John Ricketts is a UA sophomore majoring in biology and a University Honors Program Student.  He graduated from the Altamont School in Birmingham.
 
Go to this web-site for the full story as a Press Release from the University on 6/04/08:
 
 
Emailing me from New York where Dr's. Guy and Kim Caldwell were addressing the Michael J. Fox Foundation TODAY, Guy Caldwell said:  "Both students display the creativity and dedication to the cause of finding a cure for Dystonia that I expect from my student researchers, especially those who qualify for generous funding raised by patients and their friends.  I could not be more pleased with their efforts in our lab thus far and see them as significant contributors for years to come."
 
ALABAMA DYSTONIA CENTER - This project is under consideration via a $10,000 Allergan grant I've applied for and other private funding.  The "center" has been discussed with UAB, U of So AL, UAH, as well as the UofA/Tuscaloosa and would function as a "clearing house" and "coordinator" for all the research projects (at least 6 currently) not underway in Alabama.  It would be a "first of its kind" right here in Alabama and WE can make it happen.
 
SILLY ME -   I know people don't like to hear about "money", but....only 24 persons on our "membership list" have actually paid their $35 annual dues for 2008.
 
Good news:  11 of the 24 contributed add'l monies that have kept us barely in the black for 2008.
 
Those who can't afford $35...please send $1 or $5 or something to help out, please.
 
SEE YOU AT THE JULY 19TH SUMMER BBQ SOCIAL/MEETING.
    
            NO JUNE 21 MEETING.........
Ken L. Williams, Volunteer Director/Treasurer
Dystonia Support Group of Alabama
Chptr of DMRF
 

APRIL 12, 2008 - 10:00 AM

                                    
                SPEAKER:  DR. DAVID G. STANDAERT, UAB

Dr. Standaert was born in New York, NY and spent most of his early years in Bethesda, Maryland. He graduated from Harvard College in 1982 with an AB in Biochemistry. He received his M.D. and Ph.D. degrees from Washington University in St. Louis in Medicine and Pharmacology in 1988. He completed a one-year internship in Medicine at Jewish Hospital of St. Louis in 1989 and a three-year Neurology residency in 1992 at the University of Pennsylvania. He was appointed a Howard Hughes Medical Institute Physician Research Fellow, and completed a three-year research and clinical fellowship in Neurology (Movement Disorders) at Harvard Medical School and Massachusetts General Hospital in 1995.  After finishing his Fellowship at MGH he was appointed to faculty and subsequently promoted to the rank of Associate Professor. 

Dr. Standaert joined the Faculty at UAB in July of 2006 and holds John and Juanelle Strain Professor of Neurology Endowed Chair. He serves as a Vice-Chair of the Department of Neurology, the Director of the Division of Movement Disorders in the Department of Neurology, the Director of the American Parkinson Disease Association (APDA) Advanced Center for Parkinson Research at UAB, and is the Director of the Center for Neurodegeneration and Experimental Therapeutics. He sees patients in a weekly clinic and oversees many clinical trials for new treatments of Parkinson's disease.

Dr. Standaert is currently licensed to practice medicine in the states of Massachusetts and Alabama and was board certified in Neurology 1993 by the American Board of Psychiatry and Neurology.

Dr. Standaert’s laboratory works on understanding both the root causes of Parkinson’s disease as well as the origin of the disabling symptoms that appear after long term treatment of the disease. Recently, his group has focused on the role of abnormal gene expression in brain as a cause of Parkinson disease. They are using new animal models of Parkinson’s, including both conventional transgenic mice as well a model produced using a viral approach similar to “gene therapy.” The analysis of these models is conducted with advanced tools including both Laser Capture Microdissection, which allows isolation of a single cell, as well as gene array techniques to study as many as 36,000 genes in a single experiment. Dr. Standaert’s laboratory is also interested in the cause of “wearing off” and “dyskinesias” which occur in patients treated with levodopa, and has uncovered evidence which may lead to new treatments for these disabling problems. His laboratory work has been reported in over 80 peer reviewed publications.

We are pleased and honored that Dr. Standaert will join us on the 12th.  Please make plans to be there! 

From Pat, our new Leader: 

I look forward with great anticipation to working WITH YOU.  We have a wonderful group and I feel sure that working together we can gleam much support for each other.  I look forward to seeing ALL of you April 12th.

Order your Car Magnet from the Dystonia Medical Research Foundation today!  Promote awareness of Dystonia!


Click here for DSG-Alabama's year-end report for 2007.

Click here for DSG-Alabama's distribution of funds for 2006.


Coming Soon.....
we don't yet have dates for these speakers, but stay tuned.

Natalie Easterling, registered dietician
Dr. Cheryl Goyne, local neurologist specializing in pain management 
Dr. Diane Counce, local neurologist that treats dystonia
Dr. Michael Johns, otolaryngoloist, head of the Emory Voice Center
Social Security Disability Insurance Lawyer
 

 

 

  

 

 The information contained in this site is for education and information purposes only.  DSG - Alabama does not endorse or recommend in any way the information contained in this website.  Links are provided for convenience.  DSG-Alabama does not maintain links outside of this website. 

Copyright 2007, Dystonia Support Group (DSG)- Alabama.  Trisha Crain, Webmaster.