COMMUNITY CONNECTIONS
June 2007
LOCAL CONTACTS
Chair
Dee Triemer
770-945-1393
Clinic Project
Reiko Donato
Committee Members
at Large
Rachel Macri
Jennifer Weingarth
Polly Hyatt
Joy Johnson
Outreach/ Awareness
Reiko Donato
Gov’t Advocacy
Johnny Gresham
Dee Triemer
Local Outreach
Sara Gonzalez
PR/Education
Heather Blanchard
Step Forward
to Cure TS Chair
OPEN
Newsletter Editor
Maggie Parry
404-284-6159
Support Network
Volunteers
Sara Gonzalez
Sharon Carpenter
Joy Johnson
Reiko Donato
Walk Update
The SIXTH Annual Step Forward to
Cure TSC event needs your help.
Last year, the Atlanta walk was
another huge success, raising over
$135,000 and with 180 participants.
Please let me know if you are
interested in heading up a portion of
the walk, such as Wrap up Party
Leader, Volunteer Team Leader,
Logistics Leader, Race Chair, or
Walk Chair.
I believe a team of individuals could
do great things in building upon our
success over the last five years,
please let me know how you want to
get involved.
No one has expressed interest thus
far in handling the logistics for the
walk; therefore, I have gone ahead
and scheduled the walk with Marietta
Parks and Recreation and the Police.
I am also searching for a Race
Director to help expand the race
portion of the event. I can not
however, continue to work on the walk
without more support, so please let
me know if you can help.
Step Forward to Cure TSC 2008 will
be held May 17, 2008, mark your
calendars now!
Thank you,
Dee Triemer
Southeast Regional TSC
Conference Update
I hope you’ve registered and secured
your hotel room if needed! One
change in registration is that if you
wish to purchase a dinner ticket only
for an extra guest or such, the cost is
$15.00 for an adult, children are free.
So if you did not plan to attend during
the day but wanted to join the dinner
and band, please do join us!
If one parent is paying for full
registration and the other parent is
doing the babysitting, then buy them a
dinner ticket only and bring the kids!
We are still in need of fundraising, so
please help where you can with that.
We need to raise money to pay for the
conference as the registration fees do
not cover close to the cost of the
conference.
We do have more space available for
exhibitors also. If you need more
information on sponsorships or
exhibitor space, please contact me.
The conference will be a great time to
learn more about TSC as well as meet
new families and make new friends. I
look forward to everyone being there!
Dee Triemer
Chair, SE Regional TSC Conference
Tuberous Sclerosis Alliance
801 Roeder Road
Suite 750
Silver Spring, MD 20910
Tel: 301.562.9890
Fax: 301.562.9870
Toll: 1.800.225.6872
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Dee Triemer at
cjtriemer@bellsouth.net.
Mark Your Calendar!
September 16, 2007
Join us for an educational
meeting on the IDEA and IEP
tips 2pm until 4pm at Mount
Vernon Baptist church.
There will be a presentation
with an overview of the IDEA
and IEP tips and then time for
discussion on your
experiences, successes and
questions.
We look forward to seeing
you and catching up with you
then!
Mount Vernon Baptist Church
850 Mount Vernon Highway
NW
Sandy Springs, GA 30327
TS Alliance Teams with
CaringBridge to Offer New
Online Resource
The TS Alliance is pleased to
announce a new partnership with
CaringBridge(r), a non-profit
501(c)(3) organization, to offer
free personalized websites that
allow you to stay in touch with
family and friends during a
health crisis, treatment and
recovery.
The goal of the service is to ease
the burden of keeping friends
and family updated, while also
providing a way for them to send
their love, support and
encouragement.
With a few keystrokes, you can
quickly and easily create a
private and personalized website
that displays personal journal
entries and photos. Family and
friends visit the site to read
updates and leave messages of
support in the guestbook.
Directions to Mt. Vernon Baptist
Church:
The church is off the northern arc
of I-285 between I-75 and 400.
Take the
Riverside Drive exit (#24). Turn
inside the perimeter. Riverside
Drive will dead end into Mt.
Vernon Hwy.
Turn right at the stop sign onto Mt.
Vernon Hwy.
The church is located on the left
across the street from Holy
Innocents School.
Park to the left of the building
(facing the building). Enter from
the door with a sign “Offices”
Room #211 is on your left.
You can also access information
about this exciting new resource
on the TS Alliance website under
"Support Services."
January 20, 2008: The TS
Alliance of Atlanta/No.
Georgia will host an
educational meeting
featuring a presentation and
discussion by Dr. Roy
Sanders of the Marcus
Institute. He will discuss
puberty and sexuality issues
facing individuals with TSC.
The meeting will be held at
the Mount Vernon Baptist
Church from 2-4 p.m.
Please forward questions in
advance to Dee Triemer at
cjtriemer@bellsouth.net to
ensure Dr. Sanders has
ample opportunity to
address your questions and
concerns.
March 16, 2008: The TS
Alliance of Atlanta/No.
Georgia will host and
education meeting and
walkathon kickoff celebration
on Sunday, March 16 at
Mount Vernon Baptist
Church from 2:00 to 4:00
p.m. For more information,
please contact Dee Triemer
at cjtriemer@bellsouth.net.
OTHER UPCOMING
EVENTS
December 16: The TS
Alliance of Atlanta/No.
Georgia will host a Family
Gathering on Sunday,
December 16 at Mount
Vernon Baptist Church from
2:00 to 4:00 p.m. For more
information, please contact
Each season, designers Tina
Lutz and Marcia Patmos
invite a guest designer to
create a dream cashmere
sweater that is then
produced with a portion of
2
the proceeds going to their
favorite charity. This fall
features Julianne Moore's
sweater creation benefiting
the TS Alliance.
In support of the
Southeastern Regional
TSC Conference
Have you found your foursome
yet? Come join us for this fun
day of golf which helps
underwrite our regional
conference. Slots are filling up
quickly as we get closer to the
October 5th event. By then the
100 degree days will turn to
perfect temperatures for a great
day.
This one time event will be held
at the Durham Lakes Golf and
Country Club in Fairburn, GA
www.duramlakes.com. Durham
Lakes is a great new course that
I can personally attest will
present a challenge to your
game – the course is absolutely
FANTASTIC. The event is a
scramble format with a shotgun
start at 1pm. Registration and
warm-up starts at 11am. We will
have a boxed lunch and a
reception afterward to talk about
all of those great shots.
So far we have a number of
sponsors including the PGA
Superstore who is giving
everyone a $25 gift certificate for
anything you want at their store.
We welcome more sponsors and
have opportunities for everything
from a hole sponsor at $250 to
$5,000 event sponsorships.
Prize donations are accepted as
well (already have a new Mizuno
Driver!). We are also looking for
a few helpers for registration and
to ensure the day goes smoothly
as well as more sponsors.
If you need more information,
send me an email at
donator@bellsouth.net. If you
don’t have a foursome, that’s ok,
sign up as a single and I’ll pair
you up with someone fun. Or
you can go on-line to sign-up at
www.tsalliance.org under
Highlights click on the Event
Calendar. You’ll find registration
for our event under October 5.
Rich Donato
Golf Chair
neurology and endocrinology,
nephrology, neurosurgery,
ophthalmology, pulmonology as needed
To schedule an appointment, contact
Vickie Garmon in the Department of
Genetics at (866) 822-4362 or (205) 9345567.
Cincinnati
Children's Hospital Medical Center
Tuberous Sclerosis Clinic
Director: David N. Franz, M.D.
Age Range Seen: Children and Adults
Clinic Frequency: Weekly
Accepts Uninsured/Underinsured: Yes
Specialties Offered: cardiology, dentistry,
dermatology, genetics, genetic
counselor, nephrology, neurology
(pediatric and adult), neurosurgery,
ophthalmology (general and oncology),
psychology, psychiatry, plastic surgery,
social work, interventional radiology,
pediatric nurse practitioner, pulmonology,
vocational rehabilitation
To schedule an appointment or for
information, contact Melody Gulleman at
(513) 636-4222. Email:
TSclinic@cchmc.org
Nashville
The TSC Clinic at Monroe Carell, Jr.
Children's Hospital at Vanderbilt
Director: Kevin C. Ess, M.D., Ph.D.
Age Range: Infants to 18 years
Clinic Frequency: Monthly
Specialties Offered: cardiology,
dermatology, genetics, nephrology,
neurology, neurosurgery, ophthalmology,
psychiatry, psychology
For more information or to schedule an
appointment call:(615) 936-5536.
Are you not receiving our
email announcements?
Major Family Websites
Send your email address to
Dee Triemer at
cjtriemer@bellsouth.net
 Parent to Parent of Georgia

TSC CLINICS
The Tuberous Sclerosis Alliance (TS
Alliance) supports the vital role that a
tuberous sclerosis complex (TSC) clinic
can play in improving the lives of those
affected. Below is information on TSC
clinics in various regions.
Birmingham
University of Alabama Birmingham
Tuberous Sclerosis Clinic
Co-Directors: E. Martina Bebin, M.D.,
M.P.A. and Bruce Korf, M.D., Ph.D.
Age Range Seen: Children and Adults
Clinic Frequency: Monthly (second
Tuesday)
Specialties Offered: dermatology,
epilepsy, genetics, genetic counselor,
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www.parenttoparentofga.or
g.
The Parent Mentor Program
www.parentmentors.org.
Babies Can't Wait (BCW)
www.health.state.ga.us/pro
grams/bcw/.
The Governor's Council on
Developmental Disabilities
(GCDD), www.gcdd.org.
Parents Educating Parents
and Professionals, Inc.,
(PEPP www.peppinc.org.
The Georgia Advocacy Office
(GAO), go to
www.thegao.org.
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65 Dartmouth Avenue
Avondale Estates, GA
30002
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