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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