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Upcoming Events - Birmingham Group Check out our Member Activities on our Awareness Page to see what all we're doing to promote awareness of Dystonia! Check out the Southeast Alabama Group's Upcoming Events here.
Next Meeting - Saturday - February 19,
2011 - 10:00 AM
TOPIC: "THE ART OF THE INJECTION"
SPEAKER: Dr. Natividad Stover, MD - UAB MOVEMENT DISORDER
CENTER
Dr. Natividad Stover obtained her medical
degree from Alcala de Henares University in Madrid, Spain. She
completed her medical residency at the Medical College of
Virginia and Emory University. She also did a fellowship in
Movement Disorders at Emory University in Atlanta.
She joined the UAB medical staff in 2003.
Her medical interest in neurology is mainly focused on the
physiology, physiopathology and treatment of movement disorders
as well as development of new medical and surgical therapies.
She's an important part of the UAB Movement Disorder Center and
follows numerous patients with Dystonia, tremor and other
neurologic disorders.
We invite all DSGA members, families & care givers to attend.
Each of us have had various experiences with Botox injections
that were unsuccessful and we've all learned that success with
BOTOX is more ART THAN SCIENCE.
Miss the "right spot" in the "correct
muscles" and you may as well shoot the toxin up in the air.
It isn't often that we dystonia patients get
a chance to sit in the same room for a couple of hours with a "dystonia
specialist" and ask any questions we have as well as
critique and interact with such a doctor.
Dr. Stover is giving of her Saturday morning
to HELP US BETTER UNDERSTAND our problems, fears, and the why's
of when we aren't getting the relief we should be receiving.
DON'T MISS THIS UNIQUE OPPORTUNITY.
PLEASE RESPECT OUR INVITED GUEST SPEAKER BY GIVING HER A LARGE
AUDIENCE AND AN OPPORTUNITY A PATIENT RARELY HAS.
WE CAN ONLY RECRUIT THIS CALIBER OF
SPEAKER BY RESPONDING WITH A SIZEABLE AUDIENCE OF PATIENTS,
FAMILY MEMBERS & CARE GIVERS.
RSVP -
Klwmgw216@aol.com
PLEASE ATTEND! Refreshments will be served and copies of a new
book LIVING WITH DYSTONIA
should be available for each of you to take home, assuming the
publisher fills our order in time.
Ken L. Williams, Volunteer Director
Dystonia Support Group of Alabama
Chapter of Dystonia Medical Research Foundation
NEWS FROM THE DECEMBER MEETING -
The Holiday Social held on Dec 4th resulted in an abundance
of food, good exchange between members and their families who
attended, and a nice presentation by Rebecca assisted by Virginia
showing pictures of the Alabama DYSTANCE4DYSTONIA event held in
Dothan Oct 9th.
This event was initiated by Rebecca, daughter of Tim &
Virginia, and would never have been successfully pulled off if it
weren't for Rebecca's initiative, persistence, enthusiasm and desire
to honor her father, Tim, by raising money for DMRF MEDICAL RESEARCH
grants. The total raised was over $10,000!!!
I notified everyone via email
about the untimely death of 66-year-old Dr. Billy R. Burns, a
pediatrician from Texarkana, TX, whose
wife Becky and son Clay have been loyal
supportive members of DSGA. Clay as you should recall had DBS
surgery at UAB and many DSGA members followed his "journey" on the
web-site set up by sister Emily (who also spoke to a DSGA meeting)
known as Caring Bridge/ClayBurns where DSGA members posted comments
& Becky kept us informed of his "DBS journey".
The obituary posted in Texarkana papers &
in Birmingham (he was buried in Jefferson Memorial Cemetery near
Trussville) suggested that in lieu of flowers, people should send
memorials to Dr. Billy Burns in the form of donations to DMRF at my
home address.
We've received over 25 memorial checks
ranging from $25 to $1,000. I made photo copies of each memorial
note w/check, placed them in a binder and will mail this to Becky &
Clay along with a condolence card signed by those attending the DSGA
Holiday Social. The checks are being processed by our treasurer,
Dick Darden, to DMRF w/appropriate paper work. The total raised for
DMRF Medical Research by this generosity of the Burns family was
some $3,000!!!!!
The largest total sum we've generated w/donations by and
through members of DSGA for DMRF MEDICAL RESEARCH in any prior year
was $14,750 (another year we hit $14,250)...........The 2010 DSGA
generated funds for DMRF MEDICAL RESEARCH IN 2010 IS:
INDIVIDUAL DSGA MEMBER DONORS & CORP
GIFTS $ 4,500
ALABAMA DYSTANCE4DYSTONIA
EVENT 10,000
DR. BILLY R. BURNS
MEMORIAL
3,000
Total.......................................................................$17,500
*
(*) Sent to DMRF. Does not include member gifts/membership dues DSGA
used to fund our Awareness, Outreach & other projects --- including
our minimal operating expenses, 75% of which was funded by "gifts in
kind".
NEW APPROACH TO BOTOX INJECTIONS FOR DYSPHONIA:
Member Amy Harris emailed me that she found a doctor in the
Southlake Medical Center who injects Botox in vocal cords of
Dysphonia patients under general anesthesia using a scope inserted
through the open mouth directly to the vocal cords.
She had abandoned Botox injections which most
otolaryngology's perform by inserting the needle through the throat
using an EMG machine to locate the vocal cords. She had turned to
aspeech therapist who spoke to DSGA at one time, but therapy alone
didn't work --- as is the case with most of us.
Amy will be invited to speak to our group on this procedure
at a meeting in early 2011. Anyone suffering from dysphonia who,
like myself, have never been satisfied with the results of my every
4 month exterior injections, will want to learn more about this new
procedure.
Every DSGA member must know by now about the ALABAMA DYSTONIA
SCHOLARS program which is done by a handful of DSGA members as
individuals (since DMRF won't permit earmarking research funds going
through the corporation).....but I'll remind you AGAIN.
Most Medical Research "grants" by NIH, DOD (yes, the defense dep't
is funding the cause & cure for dystonia which seems to
disproportionately affects military personnel), DMRF, the DYSTONIA
COALITION, corporations and individuals
will not fund undergraduate
students working in college campus Movement Disorder research
laboratories. In order to recruit undergraduate students to
stay on campus during the summer break continuing the research lab
work they do as part of their college studies and giving up their
summer vacations, funding has to be provided "outside-the-box".
Since 2006, a handful of DSGA
members have donated or raised sufficient funds of $10,000 per
summer to pay the students a stipend wage + pay for their lab
supplies during the summer. We've had 4-5 of the Alabama Dystonia
Scholars working in THE WORM SHACK, the Dr's Caldwell biology
research lab at the University of Alabama in Tuscaloosa speak to
DSGA meetings or visit on occasion.
Gail, a DSGA member from
Greenville, TN, kicked off the 2011 fund raiser by asking her
friends & family members to donate money in lieu of gifts for both
her birthday & Hanukah. Terri of Montgomery, Nell
of Geneva, and myself (but especially Terri) have
carried the vast majority of this fund raising project every year
since 2006 either with direct donations to the University of Alabama
or soliciting donations from family, friends, corporate friends ---
anyplace we can lay our hands on $250 or more.
If you wish to "assist" with this
"off the books DSGA research project" for the summer of 2011, make a
check payable to University of Alabama Biology Dept (Tax ID#
63-6001138) and mail it to me at 216 Oakmont Circle, Birmingham,
AL 35244, for processing through channels at UofA so the money is
earmarked specifically for 2 Alabama Dystonia Scholars selected by
Drs. Guy & Kim Caldwell for the dystonia research by THE WORM SHACK.
The money has to be received by
December 31, 2010, because the scholars will be selected immediately
after the first of the new year.
Have a GREAT HOLIDAY and may the NEW YEAR bring you and your family
good health, happiness & joy along with some breakthrough in finding
the cause and a cure for Dystonia.
Dick Darden will be in charge of the January 15th meeting, as Bill
Wyatt is slated for surgery in early January, Mary Ann will be out
of the country, and Maxine and I are taking our annual trip to St.
Barts, health permitting.
Ken Williams, Volunteer Director
Dystonia Support Group of Alabama
Chptr of DMRF
P.S. - If you don't take anything
else from this newsletter, please mark Friday, April 8, 2011, on
your calendar. We're working with U.A.B. Movement Disorder Center
for an on-site SYMPOSIUM for this date. A Friday has been selected
so all the doctor's we'll want to visit with, both in their area of
specialty practice and in research will be available.
Further details will be announced
as arrangements are completed with and by U.A.B. for this important
opportunity for dystonia patients & family support or care givers.
FYI - Dick Darden initiated the
idea with Dr. Standaert and his staff who assigned Tom Brannon to
work with me in finalizing plans and details.
Newsletters from Previous Meetings are on the Newsletter page.
Meeting Basics....
Regular meetings on a monthly basis are an essential
part of offering HOPE and HELP to our membership. DSG-Birmingham will meet
the third Saturday of every month at 10:00 a.m. in space provided by
HealthSouth/Lakeshore Rehabilitation Hospital located at 3800 Ridgeway
Drive (just off Lakeshore Drive), Birmingham, AL 35209. Link to a map to HealthSouth/Lakeshore
by clicking below:
Click here for DSG-Alabama's year-end report for 2008. Click here for DSG-Alabama's year-end report for 2007. Click here for DSG-Alabama's distribution of funds for 2006.
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