PDF File - Tuberous Sclerosis Alliance



PDF File - Tuberous Sclerosis Alliance
SUMMER 2006 Volume 111
Special Events
page 3
TSC Natural
page 7
From a
page 16
The Little Flower Sale
That Could!
page 20
Chairman’s Letter
Andy Bott
Chair, TS Alliance Board of Directors
801 Roeder Road, Suite 750
Silver Spring, MD 20910 USA
(301) 562-9890 Toll-free: (800) 225-6872
Fax: (301) 562-9870
SUMMER 2006 • Volume 111
Nancy L. Taylor
Chief Executive Officer
Jaye D. Isham
Managing Editor,
Director of Communications
If you have opinions, questions or articles for
Perspective, we would like to hear from you. Please
contact the managing editor to obtain a submissions
form and guidelines.
Perspective is intended to provide basic information
about tuberous sclerosis complex. It is not intended
to, nor does it, constitute medical or other advice.
The Tuberous Sclerosis Alliance (TS Alliance) does
not promote or recommend any treatment, therapy,
institution or health care plan. Readers are warned not
to take any action without first consulting a physician.
Commentary expressed herein reflects the personal
opinions of the author and does not necessarily reflect
the official views of the TS Alliance. Information
contained in the TS Alliance database is confidential
and not provided nor sold to third parties.
Perspective is published quarterly by the National
Tuberous Sclerosis Association, Inc. d/b/a Tuberous
Sclerosis Alliance, a 501(c)(3), charitable organization.
©Copyright 2004 by the Tuberous Sclerosis Alliance.
All Rights reserved. Materials may not be reproduced
without written permission. Direct requests for
reprint permission to the managing editor.
Board of Directors
Andrew Bott, Chair
Terry Elling, Vice Chair
Cathy Krinsky, Secretary
John Steenman, Treasurer
Milly Augustine
Mark Carroll
Will Cooper, Sr.
William Ford
David Neal Franz, M.D.
Janie Frost, R.N.
Jeffrey Hargreaves
Elizabeth Petri Henske, M.D.
Christy Hobart
Georgia Johnson
Megan Johnson
Fred Linder
Tommy Lindsey
Cindy Lynch
Arien Malec
Kathy Mayrsohn
Michael Michael
MaryJane Mudd
Hiroaki (Rocky) Onda, Ph.D.
Nicole Seefeldt
Chris Sheffield
Elizabeth Thiele, M.D., Ph.D.
Rob Thurston
Endowment Fund Board of Directors
Cathy Krinsky, Chair
Andrew Bott
Julie Blum
Wilfred Cooper, Sr.
Doug Loftus
David Pryor
Patrick Rolfes
John Steenman
Rob Thurston
Merrit Von Seggern
Dear Friends,
he TS Alliance just ended its Fiscal Year and I’m pleased to announce
that the organization is in a great financial condition. We just
completed one of the most successful years ever in regards to fundraising, and I cannot thank everyone enough for all their efforts with events,
letter writing campaigns, dinners, shrub sales and the like. Great job!
I’m also still feeling inspired by the outstanding National TSC Conference held
in July. Although you’ll read more about it in this issue’s cover story, it was such
a success on many different fronts – a specific track for adults with TSC, a funfilled Day Camp for our children, incredible educational sessions, great food
and a really fine venue. I want to again thank Conference Chair Janie Frost and
her incredible planning committee, the fundraising team, the TS Alliance staff
and especially Drs. Bonnie and Jonathan Rothberg and Family for being the
event’s Presenting Sponsor. Kudos for a job well done!
In other news, the TS Alliance Board of Directors is excited that the TSC
Natural History Database project is now coming to fruition; we all have big
hopes for its success. Also, I’m pleased the TS Alliance is partnering with
other appropriate organizations – like the American Epilepsy Society and the
Polycystic Kidney Disease Foundation – to explore areas of mutual concern and
how we can better work together in the future. These partnerships are crucial as
we move forward.
Finally, the next Board of Directors meeting is scheduled in October and will
feature an outside expert who will offer members training in regards to being
a more effective board. I believe this is important to strengthen and clarify the
board’s roles and how those relate to fulfilling the organization’s mission. I’ll
report back in a future issue of Perspective.
Thanks again to everyone for their commitment to making the TS Alliance a
thriving and important organization.
Special Events
Step Forward to Cure
TSC Walkathons
On S a t u rd a y, A pr i l 29, t he
Commu nit y A l lia nces of Ne w
Jersey and the New York Metro
Area joined forces to hold the first
Step For wa rd
to Cure TSC
wa lk at hon in
New York City.
A bright, sunny
day greeted the
participants at
NY/NJ Walk
R iverside Pa rk
for the 2-mile walk along New York’s
riverfront. Congratulations to the
200 walkers who together raised
more than $70,000 to aid in the
fight against TSC!
O n M a y 13, t he R o t h b e r g
Institute for Childhood Diseases
hosted the Second A nnua l
Connecticut Step Forward to Cure
TSC on the waterfront in Guilford,
CT. More than 100 walkers enjoyed
the live broadcast by Hartford radio
station W W YZ, 92.5 FM and the
after-walk reception, while raising
$50,000! Congratulations to Walk
Chair Jennifer Waldron and her
committee – Julie Gribbins, Melissa
Sullivan and Janet Verney – for
another outstanding year! Special
thanks to Drs. Bonnie and Jonathan
Rothberg and Family for their very
generous support of this event.
The TS Alliance of the Upper
Midwest presented their Fourth
Annual Step Forward to Cure TSC
walkathon Sunday, May 7 at Como
Park Midway Pavilions in St. Paul,
Minnesota. A beautiful sunny day
provided the perfect backdrop for
350-plus walkers joining together to
raise the community’s largest success
to date raising more than $55,000, up
20% from last year. Unprecedented
awareness was achieved through
3 SPRING 2006
Julie Nelson (seated left) and Chris Hawkey
(seated right) with Upper Midwest Community
Alliance members.
Honor a r y C h a i r p e r s on s C h r i s
Hawkey of KFAN radio and Julie
Nelson of K A R E T V. Chris and
KFAN donated invaluable mentions
of the event throughout the weeks
prior to the walk. Julie produced a
90-second piece on Jim, Eileen and
Mary Hable that aired on a local
newscast and arranged to have a family
participate in a 4-minute spot on Live
Saturday Morning With K A R E ,
explaining TSC and inviting people
to the walk. We extend our deepest
appreciation to Abbott Northwestern
Hospital who, for the third year, was
the major sponsor of the event. Hats
off to Walk Chairs Sherri Trapp and
Maria Gibbons and the entire walk
committee and volunteers for making
this a continued success!
The TS Alliance of Ohio staged
two very successful Step Forward
to Cure TSC walkathons for 2006.
The first walk, held at The Chalet
near Strongsville on May 7, yielded
approximately $7,000! Many thanks
to the Gritti family for organizing and
hosting the event, which attracted
close to 100 participants. Elaine,
Frank and their team of volunteers
pulled off another spectacular and
i n spi r i n g e vent ! Oh io’s se c ond
wa l k at hon wa s held May 21 at
Centreville High School Athletic
Ohio Walk
hosted and
orga nized
by Mike
and Tamy Ball. This year’s festivities
included a raff le of donated gift
baskets and certificates, TS Alliance
Boutique merchandise and more than
100 walkers. This walk earned close
to $8,000! On hand was Stephanie
Studebaker, Democratic House of
Representative candidate for the 3rd
District. Mike, Tamy and their team
did a fabulous job!
Congratulations to
the TS Alliance of
Houston for the
tremendous success
Houston Walk
of their Third
Annual Step Forward to Cure TSC
walkathon, held Saturday, May 13 at
MacGregor Park. About 150 walkers
showed up to support the cause and
raise more then $55,000. Major
sponsors for the walk included Chicago
Title, Memorial Hermann Children’s
Hospit a l, Apache C or porat ion,
Champions, Premier Pipe, J D Rush
Corporation, ProSys Controls and
Automation Inc., Wa lmart, and
GB Tubulars Inc. The TS Alliance
extends its deepest appreciation to
Taska Fields for chairing the walk
again this year, along with the walk
committee members and volunteers.
On May 20, more than 200 walkers
participated in the TS Alliance of
Greater Chicago’s Third Annual
St e p For w a rd
to Cure TSC
wa l k at hon at
B u s s e Wo o d s
Forest Preserve
in Elk Grove
Village, Illinois.
The Smileys at the
Everyone joined
Chicago Walkathon.
in to make a
dif ference by raising more than
$30,000. In addition to the 2-mile
walk, attendees enjoyed breakfast
provided by Barrington Auto Spa and
a picnic provided by Jewel Food Store.
Tu b e r o u s S c l e r o s i s A l l i a n c e
Special Events
The unique Kidz Corner, sponsored
by Active Foot & Ankle Center, was
abuzz with activity and a magician.
The Streamwood f iref ighters also
displayed their newest fire engine for
the kids. We would also like to thank
Currie Motors for sponsoring the
walk directional sign. The walk also
had a drawing for over 50 raffle prizes
donated by local businesses. The
tremendous success of the walk was
due to the efforts of Walk Chair and
now TS Alliance Staff member Jenny
Smiley along with her outstanding
walk committee (Lisa Smiley, Shelia
Beatty, Laura Conway, Susan Henry,
John Rubinic, Kris Lapetina, Jim
Lellman and Kathy Silber) and all
the volunteers.
On May 20, 2006, t he TS
Alliance of Atlanta/North Georgia
held its Fourth
A nnual Step
Forward to Cure
TSC walkathon.
With perfect
Atlanta Walk
weather, 250-plus
walkers enjoyed lunch and a fun
wrap-up party after a beautiful 5k
walk through Marietta. This year’s
walkathon raised an astounding
$128,0 0 0 -plu s – ma k ing it t he
most successful Step For ward to
Cure TSC event ever! Dee Treimer,
Walk Chair, and Reiko Donato,
Community Alliance Chair, wish
to thank the walkers and donors for
their continued support to make the
walk a success, along with Russell
C or porat ion, F & E Spor t s we a r,
M P E qu ipment, Pa m E d st rom,
Bank of North Georgia and Johnny
The TS Alliance of the Northern
California hosted its Third Annual
Step Forward to Cure TSC walkathon
in Oakland, California on Sunday,
May 21. More than 200 supporters and
cont in u e d
compassionate walkers participated,
raising $65,000 ! Congratulations
to Event Chair Janine Steenman
who did an outstanding job as well
as the entire walk committee: Jean
Meredith, Dena Mitchell, Carolyn
Houston, and Community Alliance
Chair Shannon Hackley.
What a gorgeous day it turned out
to be on Saturday, June 3 for the TS
Alliance of the Pacific Northwest
Step Forward to Cure TSC walkathon
in Seattle, which attracted 300-plus
participants who raised more than
$60,000! Once again, Walk Chair
Kay Rawlings did a tremendous job
organizing the event! Thank you, Kay,
for work i ng
so ha rd a nd
to sponsors
Taco Del Mar
and Rawlings
Pacific Northwest Walk
The TS Alliance of New England
hoste d it s Fou r t h A n nu a l Step
Forward to Cure TSC walkathon at
Odiorne State Park in Rye, NH on
Sunday, June 4. Despite threatening
skies and chilly temperatures, more
than 150 walkers turned out to raise
$50,000! Congratulations to Walk
Chairs Tom and Sharon Gwinn for
another successful event!
Tropical Storm Alberto tried to
derail the Step Forward to Cure TSC
walkathon on Sunday, June 11 in
Aventura, FL, but it was no match for
the TS Alliance of Florida! Heavy
downpours required the walkers to
move to a nearby indoor mall instead
of Founder’s Park. But with the help
of walk sponsors Jonathan and Debbie
Berger of the Rebecca Leah Berger
Tuberous Sclerosis Foundation,
participants raised close to $6,000!
Congratulations to the committee
members, including Isaac and Beatriz
Aizenstat, Barbara Alvarez, Jonathan
and Debbie Berger, Harriet Chaifetz,
and Deb Yohn, for a great event!
More than 100 participants came
out for the TS Alliance of Indiana’s
Third Annual Step Forward to Cure
TSC walkathon held Saturday, June
17 at Southport High School in
Indianapolis. A very hot, yet beautiful
day brought families and friends
together to help raise more then
$23,000 in the fight against TSC.
Carrabba’s Italian Grill was on site
to serve up an italian feast for lunch.
Special thanks to Christine and Bill
Davis for chairing the walk and to
their entire walk committee, including
Roma and PJ Hinton, Eric and Cathy
Morgan, Susan and Bob Campbell,
and Faye and Scott Robison. We
also want to extend our thanks to
Midwest Graphics, Hat World, T&R
Traff ic Ser vices, and Starbucks,
as well as Rep. David Frizzel for
declaring June 17 as TSC Awareness
Day in Indiana.
Indiana Walkers
Congratulations to the TS Alliance
of Michigan on the amazing success
of their Second Annual Step Forward
to Cure TSC walkathon on Saturday
June 24 at Granger Meadows Park
in Lansing. More than 50 walkers
came together to raise more than
$14,000 for the TS Alliance. Special
continued on page 21
Tu b e r o u s S c l e r o s i s A l l i a n c e
Nancy L. Taylor
Chief Executive Officer
he TS Alliance staff and I are feeling invigorated and energized because of the National TSC
Conference. I can’t begin to tell you how great it
was for us to connect with so many wonderful families and
individuals during those truly special three days. It was
inspiring to see people of all ages and backgrounds come
together as one big family. As one participant recently told
me, “The conference was such a freeing experience because
we were around such warm people in a supportive environment where everyone fit in and no one stared.”
There’s no doubt the conference provided important
education, but I’m struck by the camaraderie and mutual
respect demonstrated day after day. I salute all of you for the
commitment you have to bettering your family members’
lives and for the compassion you showed each other.
Of course, volunteers played a vital role in organizing
the conference, and I’m thrilled to announce that the TS
Alliance now boasts more than 2,000 people in 47 states
who are active volunteers working on our behalf. Last year
at this time, there were 1,100 volunteers. To add more than
900 additional people this year is an incredible achievement.
These volunteers support our cause in a variety of ways, from
fundraising and outreach to serving as Matching or Support
Network volunteers to filling Community Alliance leadership
positions. Thanks to all of you for your hard work.
Last year, the TS Alliance began a unique “Meet the
Expert” series, which has proven to be hugely successful and
popular. Basically, we realized that many of our science and
medical experts travel across the country to attend meetings
and conferences. We approached them and asked if they
would spend a few hours during those times to meet with
local families and individuals with TSC; almost all said yes
and from what I’ve heard, they truly enjoyed sharing their
expertise. This coming year, we will continue the series and
will let you all know when a “Meet the Expert” meeting is
scheduled in your area.
Finally, we are in the planning stages for another Adults
with TSC Summit that will be held April 22, 2007 in
Washington, DC. Look for more information soon on the
website and in future issues of Perspective.
5 SPRING 2006
Save the Date for These
Upcoming Conferences!
December 1-5, 2006
2006 AES Annual Meeting/
North American Regional
Epilepsy Congress
San Diego Convention Center
For more information: www.aesnet.org/Visitors/
March 29-30, 2007
Curing Epilepsy 2007:
Translating Discoveries into
Natcher Conference Center, Bethesda, MD
Follow-up to 2000 Conference “Curing Epilepsy:
Focus on the Future”
April 19-22, 2007
2007 LAM International
Research Conference
The LAM Foundation
Cincinnati, OH
May 24-26, 2007
Tuberous Sclerosis Complex
International Research
Conference 2007 in Rome (Italy)
Grand Hotel Palazzo Carpegna, Rome, Italy
Information: [email protected]
September 23-25, 2007
Tuberous Sclerosis Complex:
From Genes to New
International TSC Conference organized by the
Tuberous Sclerosis Alliance
Loews Annapolis Hotel, Annapolis, MD
More information coming soon!
September 11-14, 2008
International TSC Conference
Organized by the Tuberous Sclerosis Association,
Brighton, U.K.
More information coming soon!
Tu b e r o u s S c l e r o s i s A l l i a n c e
Government Relations
Senate Committee
Adds $200 Million to
President’s Budget
Request for NIH
Senate Appropriations
Committee Approves
Funding for CDC
When the Senate Appropriations
Committee approved the Labor-HHS
bill, it included $28.55 billion for the
National Institutes of Health (NIH)
– a $200 million increase over the
amount requested by the President
and approved by the House, and a
$221 million increase over the amount
appropriated in fiscal year 2006.
In its report accompanying the bill,
the Senate Appropriations Committee
included directives to several institutes
at the NIH that are funding TSC
research. Among other things, this
language encourages the institutes
involved to revise the 10-year TSC
research plan into a comprehensive
TSC Research Strategy for a Cure.
The House and Senate will resolve
differences in the Labor-HHS bill
later this year. The TS Alliance will
continue to advocate for the highest
possible level of funding for the NIH
and the adoption of TSC directives
included by both the Senate and
On July 20, the Senate
Appropriations Committee approved
$1 million for a new Tuberous
Sclerosis Surveillance and Education
initiative that will be administered by
the Centers for Disease Control and
Prevention (CDC). This money was
included the fiscal year 2007 funding
bill for the Departments of Labor,
Health and Human Services (HHS)
and Education.
For nearly a year and a half, the TS
Alliance has urged Congress to include
funding for this important new partnership with the CDC. If ultimately
approved by Congress, the $1 million
will be used to collect and analyze data
from TSC Clinics, support surveillance and epidemiological studies,
and fund new training programs to
educate health care professionals and
teachers about TSC.
The TS Alliance is grateful to
Senators Arlen Specter (R-PA) and
Tom Harkin (D-IA) for including this
funding in the Labor-HHS spending
bill. This legislation may be considered by the full Senate in September.
support our grassroots effort.
Funding for TSCRP
Proceeds through
On May 19, the House approved
the fiscal year 2007 Military Quality
of Life Appropriations bill, which
includes $5 million for the Tuberous
Sclerosis Complex Research Program
(TSCRP) at the Department of Defense
(DOD). The Senate Appropriations
Committee, which typically does not
include specific levels of funding for
the TSCRP, approved the fiscal year
2007 Defense Appropriations bill on
July 20. House and Senate conferees
may determine the final level of fiscal
year 2007 funding for the TSCRP as
early as September when they return
from their summer recess.
The TS Alliance will continue to
work with our supporters in Congress
to preserve as much of the $5 million
approved by the House in the final
defense spending bills.
The TS Alliance is excited to
announce two new TSC Clinics, one
in Houston and one in Nashville.
The TSC Clinic in Houston,
a joint venture of the Memorial
Hermann Hospital and the University
of Texas Medical School, is the only
clinic in Houston focused specifically on the diagnosis and treatment
of adults and children with tuberous
sclerosis complex (TSC), offering
services in cardiology, dermatology,
Tu b e r o u s S c l e r o s i s A l l i a n c e
genetics, nephrology, neurology, and
neurosurgery. Hope Northrup, M.D.
is the clinic’s Medical Director. Clinic
hours are 9 am to Noon the first
Monday of each month beginning
in October. For more information
or to schedule an appointment call,
Gayla Roberson, RNC, TSC Clinical
Coordinator, at (713) 500-7032.
Kevin C. Ess, M.D., Ph.D.,
former medical director of the TSC
Clinic in St. Louis recently moved
to Nashville and has started a TSC
Clinic at Monroe Carell Jr. Children’s
Hospital at Vanderbilt. The clinic
currently meets monthly and accepts
individuals with TSC up to the age of
18 years. Services include cardiology,
dermatology, genetics, nephrology,
neurology, neurosurgery, ophthalmology, psychiatry, and psychology. For
more information or to schedule an
appointment, call (615) 936-5536.
TSC Natural History Database
Officially Launches!
fter years of planning, the
TS Alliance is truly pleased
to a nnou nc e t hat Te suji,
I nc . c omple te d t he de si g n a nd
development of the TSC Natural
Histor y Database in June 2006.
Originally developed in collaboration
with Texas Scottish Rite Hospital for
Children, the state-of-the-art database
will serve as a central repository for
information about a vast number of
individuals with tuberous sclerosis
complex (TSC) over their lifetime.
The information will enable TSC
researchers to: 1) derive countless
scientific studies, 2) identify suitable
patients for clinical trials, and 3)
design new studies based on the data
“As far as I’m concerned, the TSC
Natural History Database is one of
the most important projects
the TS Alliance has ever
launched,” said Nancy L.
Taylor, CEO. “Its impact
over the coming years will
certainly be substantial.”
Also in June, the TS
Alliance received approval
of the database project from
Independent Review Consulting,
Inc., a commercial institutional
review board, which is a committee
of scientific and lay members who
review human research studies to
ensure that a participant’s welfare is
protected before the study is begun.
After reviewing five proposals,
the TSC Database Project Steering
Committee selected the TSC Clinic
Without Walls, a branch of the
Minnesota Epilepsy Group, PA®
Michael D.
Frost, M.D.),
and the TSC
Clinic at
Texas Scottish
Rite Hospital
for Children
(Director: Steven P. Sparagana, M.D.)
to participate in a six-month database
piloting phase. This phase will provide
the TS Alliance with constructive
feedback on the various features of
the database system as the two clinics
compile information on individuals
with TSC who consent to participate.
The steering committee will then
review the outcome of the pilot phase
and recommend appropriate changes
before it is launched at six more TSC
Clinics in Spring 2007.
C O V E R S T O RY F O L L O W U P :
Hot, Windy, and a Finish
Just Under the Wire
n Ju ne 25, TS A l lia nce
supporter Brandt Johnson,
who was featured in the
last issue of Perspective, successfully
completed the grueling Ironman
Coeur d’Alene Triathlon in 16 hours,
32 minutes a nd 55 seconds. He
was one of almost 2,300 athletes
who competed in the event, which
included a 2.4-mile swim, 112-mile
bike race and 26.2-mile marathon.
And, as part of the Janus Charity
Challenge, he raised a staggering
$25,000 for the TS Alliance!
Ironman Triathlons are certainly
never easy, but a record high temperature and strong winds caused 13
percent of participants to drop out
7 SPRING 2006
altogether. Despite excruciating leg
cramps that started during the bike
race, Brandt remained focused on
finishing the event, even though that
meant alternating between walking
and running during the marathon
because of the pain.
When he realized he was a few
hundred yards from the finish line,
he started to sprint. “I was so excited,
I couldn’t feel the cramps or pain
anymore,” Brandt recalls. “I can’t
even begin to tell you what I was
feeling. I had gone through every
emotion in the book (and a few new
ones) throughout the day, but at the
finish line, it all came together in
pure joy.”
Brandt presents an Ironman shirt to Annie.
The TS A llia nce applauds
Brandt not only for the funds he
raised in honor of his cousin, Annie
Johnson, but also for his unwavering determination and commitment.
Tu b e r o u s S c l e r o s i s A l l i a n c e
Embracing the Possibilities . . .
2006 National TSC Conference
an Overwhelming Success!
fter almost two years of
pla nning, t he Nat iona l
TSC Conference has come
and gone but for those attending,
the memories will last a very long
time. It goes without saying that
the conference was a huge success,
with 657 adults from 38 states and
nine countries joining together for
three days of educational sessions,
roundtable discussions, networking
and special evening activities. The
popu la r Day C a mp st a f fed by
Corporate K ids Events of fered
unprecedented care and preplanned
activities for 182 children, while
parents or other caregivers attended
sessions. And Indian Lakes Resort
proved to be a great venue.
T he he a dqu a r t e r s s t a f f a nd
planning committee members received
numerous compliments about the
conference. Former TS A lliance
Board Chair Marion Adams wrote,
“Congratulations to the staff and
planning committee on an extremely
successful conference. I do not think
it could have gone any better. It was
great to be there and see many old
friends. And seeing all the new faces
really got me reenergized.”
Tu b e r o u s S c l e r o s i s A l l i a n c e
T he c on f e r e nc e
wa s de sig ned to of fer
something for everyone
– parents of children with
TSC; independent, semidependent and dependent
a du lt s w it h TSC a nd
their caregivers; healthcare
professionals; researchers; and others.
Elizabeth Thiele, M.D. said, “Wow!
I just wanted to say congratulations
and thanks for the conference. What
an amazing meeting. I can’t think of
how it could have been better (except
if I could have stayed for the whole
thing). It was fantastic, and I know
my families that were there really had a
wonderful time.”
The conference officially kicked
off Thursday evening with a Texasthemed barbecue dinner, complete
with country music, pony rides and
bandanas. Although it was certainly
extremely hot in the outdoor tent, most
took advantage of the opportunity to
introduce themselves and to forge
what may become lifelong friendships.
C on f e r e n c e C h a i r Ja n i e Fr o s t
welcomed everyone before TS Alliance
CEO Nancy Taylor thanked sponsors,
including our
presenting sponsor
Drs. Bonnie a nd
Jonathan Rothberg
a n d F a m i l y, a n d
announced Dr. David
Ne a l Fr a n z a s t he 2 0 0 6
Gomez Award winner. The
award was even more special
due the appearance of Dr.
Chris Gomez, who helped
present the award on behalf
of his father, Dr. Manuel R.
Gomez, who recently passed away.
Some adults with TSC slipped off
for a special bingo game, called by an
entertaining Dr. John Bissler.
On Friday, educational sessions
began in full swing; four tracks were
offered, including a General TSC
Track, a Pediatric Track, an Adult
Track, and a Special Issues Track.
Dr. Story Landis from the National
Institutes of Health provided the
opening keynote session. Throughout
t he d ay, pa r t icipa nt s a l so took
advantage of special one-on-one
meetings with experts as well as group
question-and-answer sessions with
physicians. Caribbean Night was the
theme that evening, complete with a
live band and island-inspired décor. It
was a true joy to see some many happy
adults and children dancing and
limboing the night away. Again, time
was set aside for an adults with TSC
sing-a-long, lead by Mark Martin on
guitar and Kevin Bodner on piano.
Of course, there was ample time
for everyone to network with other
families or visit the Exhibit Hall.
Exhibitors included TS A lliance
resource and merchandise tables
as well as displays and plentiful
i n f or m a t ion f r om a v a r ie t y of
vendors, such as various TSC clinics,
pharmaceutical companies, medical
devices, community service programs
and other providers.
Saturday ushered in another full
day of educational sessions and
more fun-filled activities at Day
Camp. It began with a keynote
se ssion by Ma rk V iet h who
discussed government advocacy.
That evening’s theme was “Blue
Night” in recognition of the TS
Alliance logo. Following
another wonderful meal,
attendees were treated to a
special concert from longtime TS Alliance supporter
Chris Hawkey and his band
Powerplay. Chris kicked off
the show playing his TSCi n s pi r e d s on g , “Ju s t L i k e
Everyone,” while video screens
showed a slideshow with pictures
taken throughout the conference.
But the conference wasn’t over yet!
Despite being tired, participants arose
Sunday morning to attend the final
educational sessions and a closing
session on research by TS Alliance
Vice President of Science Vick y
9 SPRING 2006
Whittemore, Ph.D. By 1 p.m., Indian
Lakes Resort was mostly vacated
by conference attendees, who left
armed with the latest information
and resources, new friendships and
hopefully a renewed sense of hope.
“We lef t the conference with
a sense of relief because of all the
medical advances, a sense of drive and
determination to raise as awareness
and funds at our upcoming walkathon,
and a newfound hope because we saw
firsthand what the TS Alliance, their
research team and all the families can
do when everyone puts their heart and
soul into it,” said Carol Valdez.
The TS A llia nce sincerely
t ha nk s a ll conference sponsors,
attendees, volunteers, and speakers
for he lpi n g e ver yone “embr a c e
the possibilities” during the 2006
National TSC Conference.
Special Thanks!
$5,000 or More
Drs. Bonnie and Jonathan Rothberg and
Family, Presenting Sponsors
Brian and Sandra O’Brien
Julianne Moore and Entertainment
Industry Foundation
Ronald McDonald House Charities
Laidlaw Education Services
The Rothberg Institute for Childhood
Athena Diagnostics, Inc.
Doug and Linda Loftus
NSYNC Challenge for the Children
UCB Pharma
David and Cathy Krinsky
Rebecca Leah Berger Tuberous Sclerosis
Gertrude and Phillip Hoffman
Philanthropic Fund
Novartis Institutes for Biomedical
Andy and Mary Bott
Fifield Realty Corp./Blum-Pattis Family
Jan and David Mintz
Chris and Joy Dinsdale
MP Equipment Company
Michael and Carol Michael
Marc, Marla and Emmory Shapses
Minnesota Epilepsy Group, P.A.
Dr. Michael D. and Janie Frost
Will and Kay Cooper – WNC &
US Bank
Gertrude Brown
Ken Kocher and Hat World
TS Alliance Staff
Grant Number 1U13 DD000210-01 from
the National Center on Birth Defects
and Developmental Disabilities, Center
for Disease Control and Prevention
Conference Committee
Janie Frost, R.N., Chair
Cindy Lynch, Day Camp Chair
Shelia Beatty
Diane Burgis
April Cooper
Kathryn Groves
Jeffrey Hargreaves
Lori Iverson
Debbie Kliebert
Jan Mintz
MaryJane Mudd
Gwen Pryor
Cindy Richards
Nicole Seefeldt
Lisa Smiley
Fundraising Team
Dr. Stephen Ashwal
Andy Bott
Will Cooper
Nancy Elling
Dr. Michael D. and Janie Frost
Georgia Johnson
Scott Johnson
Cathy Krinsky
Peggy Lindsey
Kathy Mayrsohn
Shelly McFadden
Dr. Mustafa Sahin
Tu b e r o u s S c l e r o s i s A l l i a n c e
Focusing on the Mental Health
Needs of Adults with Tuberous
Sclerosis Complex
he 2006 National Tuberous
Sclerosis Complex (TSC)
C on f erenc e f e at u re d a n
“A du lt s w it h T S C Tr a c k ” a nd
informal social sessions designed
specifically with the input by adults
living wit h TSC ba sed on t heir
ne e d s . T he f e e d b a c k f r om t he
individua ls who pa rticipated in
these dynamic and useful gatherings
was overwhelmingly positive. Much
of the focus and design of these
Mental health issues
and their relationship
to TSC have been
recognized, but
research on these issues
has mostly been done
in England.
sessions was geared toward mental
health and social issues that many
adu lt s living w it h TSC face on
a daily basis. In response to this
demonstrated increase in interest
in mental health issues, goals for
2 0 0 7 h a ve b e e n s e t by t he T S
Alliance Adult Issues Committee,
Adult Advisory Committee, Science
& Medica l Committee, and the
Outreach Committee that address
these concerns.
Mental health issues and their
rel at ion sh ip to TSC h ave be en
recognized, but research on these
Tu b e r o u s S c l e r o s i s A l l i a n c e
issue s ha s most ly been done in
England. The August 2006 issue
of Journal of Intellectual Disability
Research included an article by
Patrick Bolton, M.D., Ph.D. and
coworkers, entitled “Psychopathology
in Tuberous Sclerosis: An Overview
and Findings in Population-based
Sample of Adults with Tuberous
S c l e r o s i s ,” t h a t d i s c u s s e d t h e
prevalence of mental health issues
in individua ls living with TSC .
This study reviewed 60 individuals
with TSC and found that 40% had
a histor y of mental illness, with
t he most c om mon bei ng major
During the Adult Track sessions at
the National TSC Conference, many
participants expressed their comfort
level in having an outlet to share
what is often not discussed during
their regular medical treatments
and appointments. Practitioners and
those seeking treatment for TSC
often focus on seizure control, kidney
issues and other potential medical
complications. While many adults
with TSC have regularly scheduled
appointments for testing and followup, mental health issues often go
undiagnosed and untreated.
Adu lt s w it h TSC involved
in the TS A lliance have become
increasingly vocal in their desire to
have these issues addressed and seek
practical advice on how to handle
some of the daily life issues that at
times create anxiety and stress. Some
examples given were planning a
schedule, having to create an agenda,
set t ing rea list ic t imet able s a nd
building confidence, and developing
le a der s h ip s k i l l s . M a ny a du lt s
described living a typical life, but
feeling overwhelming stress at those
times when deviations of plans or
unforeseen circumstances developed
in their lives.
The various TS A lliance
commit tee s have ident if ied t he
following goals for 2007 to support
the increased desire of adults living
with TSC to raise awareness of the
prevalence of mental health issues
and develop a plan on supporting
their quest for a higher quality of
• Identif y menta l hea lth needs
of adults with TSC including
support and treatment options
• Advocate for increased
identification and prevalence of
mental health issues affecting
adults with TSC
• Create a resource for parents,
spouses and significant others on
issues related to mental health
• Increase training opportunities
for adults with a focus
on c on f idenc e bu i ld i ng a nd
developing leadership skills
• Develop a n outreach pla n
targeting communit y menta l
health facilities
• Encourage increased research into
mental health issues affecting
adults with TSC
These initiatives will provide a
solid framework for the TS Alliance
that is responsive to the menta l
health needs as identified through
the TS Alliance’s adult constituency.
We are excited to move forward in
the continued effort to support the
needs of adults living with TSC and
look forward to partnering with you
to do so.
P E R S P E C T I V E 10
Mike and Milly Augustine
Leaving a Legacy for the Fight Against TSC
housands of years ago, caring individuals assured
the safety and well being of their villages and
communities by tending the fire overnight. The
light from the fire kept enemies and foes at bay while the
people of the village quietly slept through the night. Many
generations later, it is no longer necessary for individuals
or families to keep the fire burning all night. But there are
still people who help protect and support the future.
The TS Alliance community has its own “Keepers of
the Flame” designation for those individuals and families
that have designated a planned gift through their wills
or estate plans to the TS Alliance Endowment Fund or
TS Alliance, including Mike and Milly Augustine of
Alhambra, California – parents of Megan and Monica.
It was the week before Christmas 1989 and Megan
was just a newborn when a tumor in her heart was
found. Mike and Milly were told she probably would
not sur vive. But hope improved when a pediatric
cardiologist at UCLA, Dr. Roberta Williams, diagnosed
Megan as having tuberous sclerosis complex (TSC). The
Augustines’ lives were changed forever.
During their research, the family came across Dr.
Manny Gomez’s book on TSC and visited the doctor in
May 1990 to have both their daughters examined. Tests
showed that Megan had two tubers in her brain, but
Monica was fine. Dr. Gomez referred the family to the
National Tuberous Sclerosis Association (NTSA), which
became the TS Alliance, and the rest is history.
In 1995, M i ke – a n e st ate pla n n i ng at torne y
– was invited to speak about estate planning at an NTSA
meeting in Richmond, Virginia. He encouraged the
audience to create an endowment. “It is easier to get
someone to leave $10,000 in his or her will than it is to
give $10,000 now,” Mike said.
In those days Milly was an active TS A lliance
volunteer. For more than ten years, she oversaw the Gift
Wrap fundraising program, which is now handled by the
TS Alliance staff. These days, Milly has the opportunity
to explore other interests and recently accompanied
Megan’s high school class on a trip to China. And with
Monica leaving for college this fall, Milly has joined the
TS Alliance Board of Directors.
11 S P R I N G 2 0 0 6
“Now my interest is in independent young adults, like
Megan,” says Milly, “who have strength in certain areas,
yet lack skills in other areas. Becoming a board member
is one way for our family to help make difference.”
W hen Mi ke bec a me cha ir of t he TS A l l ia nc e
Endowment Board, he decided to set an example for
philanthropic giving so he and Milly pledged a $100,000
donation as part of their trust: another way they can
make a difference. The TS Alliance community credits
Mike as a great advocate for the TS Alliance Endowment
Fund and for planned giving.
Mike and Milly are passionately committed to helping
everyone affected by TSC. They know there will always be
uncertainties about funding an organization like the TS
Alliance – tax laws change and incentives to give change. But
the endowment will always be there in good times and bad.
“What we do matters,” Mike asserts. “As an estate
planning attorney, I cannot impose my values on my
clients. But I can set an example, and I can help them
achieve their own charitable goals.”
Mike continues, “If a TSC cure was imminent, I
believe we could liquidate the endowment fund. But for
now, we want to help make the endowment the biggest
annual donor to the TS Alliance.”
Making a legacy bequest is simple and gives you the
opportunity to make a significant difference. The TS Alliance
Endowment Fund is grateful for the commitments of its
Eternal Flame Society members including Mike and Milly
Augustine. For more
information, contact
Nancy Taylor, TS
Alliance CEO, at
(800) 225-6872.
Tu b e r o u s S c l e r o s i s A l l i a n c e
TS Alliance Announces 2007
Research Grant Awards
h e Tu b e r o u s S c l e r o s i s
A lliance is pleased to
a n nou nc e ne w re s e a rc h
grant awards for Fiscal Year 2007:
Pr edoc tor a l
To : Tr i s t a n S a n d s ,
Sponsor: Arnold Kriegstein, M.D.,
Ph.D., University of California, San
Francisco Role of Tuberin in Cortical
Neuron Migration $100,000 for
07/01/06 – 06/30/08
Su mma r y : Seizures, lea rning
disabilities, and autism associated
with cerebral lesions frequently cause
significant problems for individuals
with tuberous sclerosis complex
(TSC). The cortical malformations
(tubers) are thought to arise partly
due to a defect in the migration
or movement of neurons during
development of the brain. Neuronal
migration is critical to the proper
formation of the t ypica l layered
architecture of the cerebral cortex,
and disorders in neuronal migration
can give rise to tubers in individuals
with TSC. Although the tubers are
thought to ref lect a disturbance
in neurona l migration, the
pathogenesis of these lesions is not
well understood, and the roles of the
gene products of TSC1 and TSC2
in neuronal migration have not been
investigated. Preliminary work in
embryonic rats has demonstrated
that loss of TSC2 function from
newly generated cortical neurons
prevents normal migration into the
cortex. This project will examine
the nature of this migratory defect
and to characterize better the role
Adult Service Update
would like to take this
opportunity to thank everyone
for their concern and well wishes
during my last bout with TSC/LAM.
It really validates what I set out
to do when I started volunteering
for the TS Alliance – to give back
and to make life better for those
who live with this disease. The love
and support I received during my
illness was so overwhelming, and I
appreciate it sincerely.
That being said, I learned so much
from this latest challenge. One is
that people appreciate and recognize
the progress we have made thus far
and continue to make. But also the
Tu b e r o u s S c l e r o s i s A l l i a n c e
fact that I
am human
and due to my state of TSC/LAM
it does impact my life and force me
to take good hard looks at myself
and what I can accomplish both
professionally and in my volunteer
endeavors—which is quite a bit, but
perhaps not as much as a few years
ago. Balance is important as well
as recognizing your limitations, so
you can do the best for yourself and
those you serve. This has been a
hard lesson for me to learn.
W hich is why I have come to a
decision. I think the best way to keep
the momentum moving forward is
to re-organize the Adult Advisory
Committee. We’ve made great strides
the TSC2 gene product tuberin
plays in neuronal migration during
cortical development. By examining
TSC gene function in the context
of brain development, it is hoped
that insight will be ga ined into
appropriate therapeutic targets for
prevention and/or amelioration of
CNS manifestations of TSC.
To : K a t r i n D u e v e l ,
Ph.D., Sponsor: Brendan Manning,
Ph.D., Harvard School of Public
Health, Boston, MA Therapeutic
Potential Stemming From Defects
i n C el l Su r v iva l Sig na l i ng a nd
Bioenergetics in TSC Cells a nd
Tumors $150,0 0 0 for 07/ 01/ 06
– 06/30/09
but still have far to go. However,
it is not something one adult can
accomplish by him- or herself, nor
should it necessarily be.
Therefore, I am proud to announce
the appointment of a co-chair to our
committee : Mark Martin. Mark
has been a valued member of our
committee for years now and brings a
unique perspective, not only because
he is an adult with TSC, but also a
parent. He is well aware of the issues
that face adults and the challenges
that face us all, and I have the utmost
confidence in him. I am delighted he
has accepted this position.
In addition to being elected to
the Board of Directors, I have also
been asked to chair the Adult Issues
P E R S P E C T I V E 12
Summar y: The TSC1-2 complex
is a target of a variety of growth
factor signaling pathways, all with an
interaction with mTOR (mammalian
target of rapamycin). Based on rodent
models of TSC, mTOR inhibitors,
such as rapamycin and its derivatives,
are promising drugs for the treatment
of t u mor s i n i nd i v idu a l s w it h
TSC. The aim of this project is to
understand the signa ling events
specific to cells and tumors that lack
either the TSC1 or TSC2 gene, and
to define conditions that trigger cell
death specifically in the absence of
TSC gene function. These studies
could signif icantly impact drug
design efforts and treatments of TSCassociated tumors.
– 06/30/09 [Supplement to grant
awarded by the National Institute of
Diabetes and Digestive and Kidney
Dise a se, Nat iona l Inst it ute s of
Summary: TSC is a genetic disease
in which individuals develop kidney
tumors, kidney cysts and kidney
cancer. This project uses biochemistry,
cell culture, human specimens and
animal models to elucidate the cause
of kidney disease in TSC. The cellular
and biochemical pathways that cause
kidney tumors and cysts in individuals
with TSC are likely to be the same, or
similar, to those in other individuals
and may be very important in our
understanding of kidney cancer.
Grant Award
To : E l i z a b e t h Pe t r i
Henske, M.D., Fox Chase Cancer
Center, Philadelphia, PA Mechanisms
of Renal Tumorigenesis in Tuberous
Sclerosis $150,000 for 07/01/06
To: David Kwiatkowski,
M.D., Ph.D., Brigham
& Women’s Hospital, Harvard Medical
School and Amy Farber, Ph.D., LAM
Treatment Alliance, Boston, M A
LAM/TSC Lecture Series $24,540 for
07/01/06 – 06/30/09
Committee. I am hoping that in this
next year, Mark can get a good feel of
how to lead our committee and if my
added responsibility necessitates that
I step back from the leadership, Mark
can step in to lead and appoint a new
Strong leadership is important,
but so are fresh ideas and giving
people opportunities to grow. This is
one step I see that could potentially
foster a lot of positive momentum
in keeping issues moving forward
a nd a l so prov ide c ont i nu it y i n
representation at our committee level
but also potentially the Board of
Our committee is also working
ha rd to of fer more volu nteer
opportunities to adults on both
local and national levels. We are
instituting a framework, called the
Adult Network, to provide leadership
training and ways for adults to meet
and form valued relationships and
support. We will work closely with
our valued Community A lliance
leaders to help find ways to create
such opportunities. We owe much to
our Community Alliance leaders, who
are truly dedicated to finding ways
for adults to stand strong and support
one another as well as become valued
contributors to our TSC family at
large. I want to thank them for their
openness and honesty that we had in
a recent conversation in March. This
was dialogue that needed to happen
13 S P R I N G 2 0 0 6
Summary: The Boston TSC/LAM
Lecture Series will bring together
t he c l i n ic a l a nd ba sic re se a rc h
community for monthly lectures
focused on various aspects relevant to
TSC and LAM research. Now in its
second year, this extremely successful
and stimulating lecture series will
continue to bring together the TSC
and LAM research community for
ongoing discussions.
To: Frank McCormack,
M.D. & Bruce Trapnell,
M.D., Un iver sit y of
Cincinnati, Cincinnati,
OH MILES Trial for
Individuals with LAM $200,000 for
07/01/06 – 06/30/08 Summary:
This project is a clinical trial in order
to study of the effect of rapamycin
on lung f unction in individua ls
with lymphangioleiomyomatosis
( L A M ). Ind iv idua ls w it h L A M
and was ver y positive. I want to
thank the staff for all the assistance
and guidance they offer in helping us
create the framework.
At any time, please let Mark or
me know if there’s anything we can
do to serve you. We are working
on some exciting things but are
always open to a second set of eyes
in identifying issues important to our
community. Please feel free to bring
us your concerns.
All the best,
[email protected]
Tu b e r o u s S c l e r o s i s A l l i a n c e
TS Alliance Receives Research
Donation from TSCST
i-Long Zheng, M.D., Ph.D.,
Department of Biochemistry
a nd Mole c u l a r Biolog y,
Universit y of Calgar y, Calgar y,
E d monton, Ca nada, received a
Junior Investigator Award from the
TS Alliance in 2005 for the project
entitled “The Role of Tuberin in
Vascular Smooth Muscle Cells.”
Tuberous Sclerosis Canada Sclérose
Tubéreuse (TSCST), the Canadian
TSC organization, recently bolstered
his research efforts with a $50,000
donation to t he TS A llia nce in
support of the original $150,000
grant award to Dr. Zheng.
The goal of his research is to
identif y how tuberin affects the
grow th and function of smooth
muscle cells such as those that make
up blood vessels throughout our
bodies. It is clear from the experience
of m a ny i nd iv idu a l s w it h TSC
that abnormal blood vessels are a
hallmark of the kidney tumors (renal
angiomyolipomas or AMLs) and that
they can rupture and hemorrhage
(bleed excessively). The larger the
AML, the more likely the tumor is
to have abnormal blood vessels that
can hemorrhage. In addition, there
is a higher than normal incidence
of aneurysms (an aneurysm is an
abnormal widening or ballooning
of a portion of an artery, related to
weakness in the wall of the blood
vessel) in the brains of individuals
with TSC compared to the general
population, as well as reports of
significant aneurysms in the aorta (the
major artery that supplies blood to the
body) in young children with TSC.
Dr. Zheng’s research will help
provide information about the defect(s)
¿Qué noticias
hay en la TS
Siblings Wanted for a
Modifier Gene Research Study
¡Buenas noticias para nuestra
población de habla hispana! Se
pueden ver más de veinte Hojas
Informativas de la Alianza TS
en nuestra pá gina del web
www.tsalliance.org. Haga click
en el vínculo, “Informacio n en
Español” para ver e imprimir
hojas informativas con temas
que incluyen, el t ra storno
por déf icit de atención con
hiperactividad, tratamiento de
problemas de salud mental y
del comportamiento, espasmos
infantiles, y pruebas genéticas.
Tu b e r o u s S c l e r o s i s A l l i a n c e
The Carol and
Ji m He r s c ot
Center for
Children and
Adu lt s w it h
Tuberous Sclerosis Complex and
t he Center for Huma n Genetic
Resea rch at t he Ma ssachuset ts
Genera l Hospita l a re tr y ing to
identify additional genes that play
a role in neurologica l problems
i n t u b e r ou s s c ler o s i s c omple x
(TSC). They would like to enroll
the siblings (brothers and sisters)
over 2 years of age with TSC who
differ in whether or not they have
autism (or the severity of the autism
spectrum disorder), have or had
infantile spasms, or have or had
uncontrollable seizures.
in these smooth muscle cells in blood
vessels in TSC so that new therapies
and treatments can be developed to
prevent the potentially devastating
and life-threatening hemorrhages that
can occur in individuals with TSC.
The TS Alliance sincerely thanks
Dr. Zheng for his important work and
the TSCST for its gracious donation.
Study participants will
• A clinic a l eva luation by a
neurologist specialized in TSC
(Dr. Elizabeth Thiele);
• Blood drawn;
• A brain MRI;
• An EEG; and
• Neuropsychological testing (only
for siblings differing in autism).
The whole study will take about
2 days to complete. There is no
direct cost to the participants. Travel
and lodging will be reimbursed for
participants who live more than 2
hours away from Boston.
For more information contact
Susana Camposano 617-726 0240
(M-F, 8-5), [email protected]
P E R S P E C T I V E 14
Franz Receives the 2006
Gomez Award
Dr. Franz offers thanks after
receiving the Gomez Award.
he success of t he TSC
C l i n i c a t C h i l d r e n ’s
Hospital Medical Center
in Cincinnati has been primarily
attributable to by Dr. Franz’ continual
commitment to improve the outcomes
for individuals with tuberous sclerosis
complex (TSC). It has undoubtedly
become one of the premier resources
for TSC in the world.”
“ T he c ont ribut ions he ha s
made to the TSC community are
numerous. As a lecturer, teacher,
advocate, caregiver, author, and
researcher, his commitment speaks
for it sel f. W h i le I a m not su re
we have yet seen his greatest
accomplishments, his most
prolific contribution to date is the
development of t he TSC Clinic
at Cincinnati Children’s Hospital
Medical Center.”
W it h t h e s e w o r d s , a n d t h e
rec om mend at ion s of nu merou s
individua ls with TSC a nd their
fa milies, a s well a s t he doctor’s
colleagues, Doug and Linda Loftus
nominated Dr. David Neal Franz for
the Manual R. Gomez Award. Dr.
Franz won the award this year for his
“tireless commitment to improving
the lives of those affected by tuberous
sclerosis, while finding a cure.”
His award was announced at the
National TSC Conference outside
Dr. Franz received a Bachelor of
Arts degree from Earlham College
in Richmond, Indiana in 1981, and
his medical Ohio State University
in 1985. He completed a Pediatric
Residency at Wright State University
School of Medicine in 1987 and
a Pediatric Neurology Fellowship
at the Universit y of Cincinnati,
Children’s Hospital Medical Center
in Cincinnati in 1990. He has also
written numerous publications on
TSC and currently serves on the
TS Alliance Professional Advisory
Nominations for t he 20 07
Manuel R. Gomez Award should be
submitted before January 1, 2007.
Please send a letter of nomination
t o g e t h e r w it h t h e C V f o r t h e
nominated individual to Dr. Vicky
Whittemore at the TS Alliance at
[email protected]
TS Alliance Issues Joint Request for
Proposals with PKD Foundation
Cheryl Walker, Ph.D., from the
M.D. Anderson Cancer Research
Center in Smithville, Texas and Chair of
the TS Alliance International Scientific
Advisory Board, was sitting at a research
conference on polycystic kidney disease
(PKD) and realized that much of what
she was hearing overlapped with what
she had recently heard at a tuberous
sclerosis complex (TSC) symposium.
With Dr. Walker’s encouragement, a
meeting was held in Philadelphia with
the CEOs and Science Directors of the
PKD Foundation and the TS Alliance,
Dr. Walker and a few key researchers.
The result of that meeting was a joint
PKD-TSC research workshop to
explore the overlap between the two
diseases (for a summary of the research
workshop, see www.tsalliance.org ), as
15 S P R I N G 2 0 0 6
well as a joint Request for Proposals
(see below).
The PKD Foundation and the
Tuberous Sclerosis Alliance (TS
Alliance) endeavor to stimulate,
support and coordinate research
that will lead to a cure for PKD and
TSC, while improving the lives of
those affected. This joint initiative is
intended to foster research that impacts
both PKD and TSC by encouraging
researchers to work collaboratively.
The PKD/TSC Collaborative
Research Awards will focus support on:
• Research that reflects innovative
approaches and techniques
• Research that will develop
necessary pilot data for seeking
larger awards from the NIH,
DOD and other funding sources
PKD/TSC Collaborative Research
Awards are designed to provide
funding for a collaborative study on
TSC and PKD on:
• Mechanisms of action and/or
interaction of the genes for TSC
and PKD
• Mechanisms of renal cyst
formation in PKD and TSC
• Development and preclinical
testing of candidate therapeutics
for PKD and TSC
• Research on the overlapping
clinical manifestations of PKD
and TSC
For more information, researchers
should contact Vicky Whittemore at
1-800-225-6872 or at [email protected]
Tu b e r o u s S c l e r o s i s A l l i a n c e
From a Grandparent’s Viewpoint
By Shonnie Johnson, Annie’s “Nana”
ello to all of you grandparents
out there. It’s great to be in
touch again.
I’d like to tell you about a very
special grandparents’ session that my
husband, Ken, and I moderated at
the beginning of the National TSC
Conference. It was great meeting
everyone early, because we all felt so
much more connected as we ran into
each other at meals, in or between
sessions, etc. And, each day we could
see that everyone was more relaxed
and comfortable.
Gr a nd p a r e nt s h a ve a lot i n
common. We a re concerned for
two generations – our own children
plus our grandchildren. When we
first learn of a TSC diagnosis, there
are so many unknowns, so many
questions we want to ask (and have
answered) and so many feelings
of helplessness and loneliness. We
wonder if anyone really understands
where we’re coming from and who
might be able to offer some direction.
So, without a doubt, being able to
attend a National TSC Conference
was such an incredible gift. The
presentations were understandable and
amazing as were the opportunities to
learn, share and interact with others.
Plus, the progress made since our
granddaughter, Annie, was diagnosed
23 years ago has been awesome!
T he gra ndpa rent s’ se ssion
was very informal…meeting each
other and sharing information like
where everyone lived, where their
grandchildren lived, how old the
grandchildren are, how the diagnoses
came about and when, and what
manifestations are present now. We
also exchanged contact information
so we could keep in touch. We then
discussed the many ways to become
involved or more involved in offering
support to the TS Alliance. Some were
already participating in fundraising
Tu b e r o u s S c l e r o s i s A l l i a n c e
events such as walkathons, letter
writing, outings, etc. And, I’m pleased
to say that many notes and emails have
been shared since the conference.
We also met other grandparents
during the conference. One attended
with her young adult grandson, and
she was truly on a mission to get her
family involved. She had seven boxes
We wonder if
anyone really
understands where
we’re coming from...
ready to mail, filled with all kinds
of information from the sessions
along with resource papers, gift-wrap
fundraising kits, and items she bought
at the TS Alliance store. Moreover,
her grandson wrote a note to put
in each box saying, “You’re now an
official TS Alliance supporter,” which
is a great network builder!
Another grandparent lived across
t he ocea n from her gra ndchild.
What a heartbreaker, but she was
determined to make a difference, and
my guess is she will. As unique as each
story was, the more everyone learned,
the more wonderful, high-achieving
TSC individuals they met and the
more they realized what an amazing
team of doctors and researchers is
working hard to find new and better
treatments, procedures, medications
and options…the more encouraged
each person became.
Having TSC Clinics and active,
dedicated Communit y A lliances
in key areas across the countr y,
knowing that the clinical trials now
in process are providing great hope,
having a test available to determine if
someone carries a TSC gene, having
health agencies partnering with us
because of the impact our research
will have on so many diseases besides
TSC, and having the heartwarming
and aggressive support of some well
k nown celebrities who continue
to make the public aware of this
disease – these are but a few of many
rema rk able a nd tremendous TS
Alliance accomplishments over the
past few years!
We feel blessed to be part of a
grandparents’ group that is vibrant,
active and eager to do any thing
within our means to impact not
only our grandchildren’s lives, but
also thousands of TSC families and
individuals. That makes each of us a
very formidable team member! And
what team might that be? The TS
Alliance team, of course!
It is a team made up of a vast and
diverse network of unselfish, giving,
dedicated and determined people
who share the same goals as we do – a
team of family and extended family
members, professionals, neighbors,
volunteers, co-workers, neighbors,
friends and “friends of friends.”
And obviously, it is a winning team,
making dreams become realities day
by day. And so grandparents, make
sure you are counted among the
players. The awards earned will be
very personal and ever so special!
Ken and Shonnie Johnson at the National
TSC Conference.
P E R S P E C T I V E 16
Young People Support Stamp Out
TS Campaign!
his past spring,
several young
people used
t he TS A l lia nce Sta mp
Out campaign to
complete va rious school
requirements. One shining
e x a mple is K ate Ca r ter,
a 13-year-old with TSC,
who needed to complete a school
requirement but wanted to ensure
that it was something useful as well.
She contacted the TS Alliance to ask
what she could do. Kate then decided
to create a Stamp Out page on www.
f irstgiv ing.com where she ra ised
$3,431.00. This wasn’t quite enough
c a mpa ign ! Sta mp Out
raised almost $57,000 this
past year, and we could not
have done it without you.
Regardless of the amount
r a i s e d , pl e a s e k n o w w e
appreciate and value all you
have done.
With the holiday season
fast approaching, please include a
STAMP OUT gift form with your
holiday cards to request a donation
on behalf of the Tuberous Sclerosis
Alliance (TS Alliance). STAMP
OUT is an easy way to raise vital
funds for tuberous sclerosis complex.
It also provides an opportunity for
Your participation will assist the TS Alliance
in funding family support services, research
and outreach programs while raising
awareness for TSC.
though. Kate also helped to organize
a spaghetti dinner at St. Andrew’s
Catholic Church which included a
screening of “Lady and the Tramp,”
as well as a silent auction. We’re
pleased to announce Kate earned an
“A” for the assignment!
In addition, Michael DiDomenico
needed to complete some volunteer
work for school a nd decided to
also participate in the Stamp Out
Letter Writing Campaign. Michael
wrote an articulate letter to all of
his family and friends in honor of
his little cousin. Michael’s letter
was extremely touching and raised
nearly $1,000.00.
Thanks to Kate, Michael and
everyone else who participated in
the Stamp Out TS letter-writing
17 S P R I N G 2 0 0 6
people to make an end-of-the-year
charitable contribution.
Your participation will assist
the TS Alliance in funding family
supp or t s er v ic e s , re s e a rc h a nd
outreach programs while raising
awa rene ss for TSC . Send i ng a
letter or card requesting a donation
c a n m a k e a si g n i f ic a nt i mpa c t
on the funding available for TSC
Yo u w i l l b e a m a z e d a t t h e
magnitude of support and generosity
that your friends, family members
a nd bu si ne ss c ont ac t s g ive you
simply because you sent them a
letter and asked for their support.
To request a kit with the gift forms,
sample letters, and TSC information
c o n t a c t W i l l i a m To l e n t i n o ,
D e v e l o p m e nt C o o r d i n a t o r, a t
(800) 225- 6872 or wtolentino @
There is a new and easy way
to raise money for Tuberous
Sclerosis Alliance (TS Alliance)
just by searching the Internet
with GoodSearch.com.
I t ’s s i m p l e . Yo u u s e
GoodSearch.com like any other
se a rch eng i ne — t he site is
powered by Yahoo! — but each
time you do, money is generated
for the TS Alliance.
L a st yea r, sea rch engines
generated close to $ 6 billion
in revenue from advertisers.
With GoodSearch, part of this
advertising revenue will now be
directed to TS Alliance.
We hope that not only will
you use GoodSearch as your
main search engine from here
on out, but will also pass this
message on to your friends and
family. The more people who
use this, the more money will
go to finding a cure for tuberous
sclerosis complex.
Tu b e r o u s S c l e r o s i s A l l i a n c e
This and That
Alliance news
Student Summary
of Performance:
This free
col lege previe w
event for students
with disabilities,
parents and
happens Saturday,
November 18, from
8:30 a.m.-12 :30
p.m. at Virginia Commonwealth
University in Richmond. Details
and registration information at
A new provision
in IDE A 20 04
requires schools to
provide students
with a “summary
of performance”
upon school
completion. Learn
about t his new
provision and how
to use it to assist
with transition to
higher education:
The TS A llia nce is exploring
starting several new Community
Alliances. If you’re in one of the areas
below, be sure to let us know your
interest in participating by calling
(800) 225-6872.
Albany, New York
Central California
Kansas City
Las Vegas, Nevada
Nashville, Tennessee
Southeast Virginia
Western New York
Honorariums (June 2006 – July 2006)
You can honor a friend or family member for an important occasion with a gift to the TS Alliance. It is a wonderful way to send
a birthday or anniversary wish, or congratulations for retirement, a job well done, graduation, etc. Please include the name and
address of the individual being honored so that acknowledgement of your kind donation can be sent.
Henry Albers
Judith Aldred
Joshua Barrett
Xavier Barr-Malec
Jack Beard
Daniel Beldner
Jacob Blood
Dennis M. Blum
Desiree Blum
Jasmine Blum
Nicholas Blum
Terri Blum
Elizabeth Boussie
Joanne Bowman
Alexa Brown
Matty Campbell
Joel Cannilla
Douglas Carhart
Raymond F. Cella
Madison A. Chadwick
Nicholas P. Chess
Rose A. Chodzinski
Leo Citrola
Liam M. Coady
Diane Colgan
Samantha Cothron
Michele E. Dahl
Karissa M. Daigneau
Nathan M. Darney
Preston Fitzgerald
Brendan Foster
Alex Gershon
Alice Gibbon
Jordan Goldstein
Orion Gonwa
Elizabeth S. Grenz
Rita Gulack
Deanne J. Guy
Trey Gwinn
Evan Heffron
Jack Heslin
Alison Heyman
Donald Hileman
Mary P. Hollan
Hannah L. Hoslet
Bonnie V. Houghton
Trevor Hulbert
Benjamin Hutchinson
Hannah Jeffers
Annie Johnson
Hayden A. Joyce
Samantha King
Joline Koons
Jacob Koponen
Hannah LaForte
Michele Leonard
Josephine Liddle
Tommy R. Lindsey
Douglas P. Loftus
Ryan Long
Phillip Macri
Morgan Marlow
Abe Mastbaum
Celia W. Mastbaum
Matthew Mastbaum
Ashlin McFadden
Joshua Michael
Pealma T. Militch
Antonio Moreno
Marley Myers
Lauren Niemeyer
Martin November
Marybelle Ocampo
Mami Onda
Ty Onda
Eric Parkes
Patricia J. Parsons
Georgia D. Perez
Mitchell R. Peters
Brian J. Quinn
Sarah Quintana
Martha Ratner
Devin Roesler
Grace Rubeck
Kaitlyn R. Sabedra
Eva C. Schaedler
Ryder Schalich
Francesca Schmidt
Kylie Seggerman
Benjamin Shapiro
Joshua Shoup
Drew Sklarin
Braydon M. Smith
Gena H. Somra
Peter Staub
Will Staub
Julia Steenman
William Steinka
Gertrude Stem
Adam Sullivan
Emily B. Szilagyi
Robert Szilagyi
Cameron Taylor
Dee R. Triemer
Kurt T. Ullrich
Michael Ulwick
Vicki VanDenHandel
Nicholas Vecchio
Brian Vincent
Mark L. Warren
Emily Weir
Kelsey A. Welter
Clara White
Ilana Wiesel
Lindsey A. Wilson
Lisa M. Wray
John Zarbetski
Paul Zarbetski
Memorials (June 2006 – July 2006)
Contributions are given to the Tuberous Sclerosis Alliance at the request of family members in memory of their loved ones. We
extend our sympathies to the family and friends of those memorialized below. These generous contributions support the progress of
our mission to find a cure for tuberous sclerosis complex.
Clyde E. Bales
Robert S. Baranowski
Ms. Beckerman
Kathleen R. Beckley
M. Palmer Bedsole
Jules H. Bogaev
Joyce C. BoltonRodger
John D. Brady
Quinn Ramondetta
Hazel Brys
Shelby Burns
Wilbur Crone
Helen Farley
Keith Franzone
Tu b e r o u s S c l e r o s i s A l l i a n c e
Andrew J. Geljookian
Holly Guastaferro
Jack Hagerty
Gary Hayden
Albert Heffron
Vincent Holubowicz
Andrea Kebbel
Darrell Kohli
Martin Mahr
Mr. McCoy
James A. McNelis
Shannon M. Merkel
Rosenetta Mervis
David Murphy
Jim Nolan
Jackie Olivo
Beverly Parkes
Paul Gary Pecharko
Jana R. Price
Betty Rabinette
June E. Riepe
J.J. Smith
Curtis Springer
Margo Sullivan
Cassidy P. Triplett
Ken Waldrip
Greg Wallis
Justin Ward
Sybil Ward
Kenneth D. Watson
David H. Watt
Amy Weber
Chelsea J. Wolford
P E R S P E C T I V E 18
Tuberous Sclerosis Alliance Staff Contact Information
All TS Alliance staff members can be reached
at the toll-free office number (800) 225-6872,
locally at (301) 562-9890 or through their
e-mail addresses.
Jennifer Dotson
Director of Advocacy and Outreach
Constituent and family advocacy and support
[email protected]
Nancy L. Taylor
Chief Executive Officer
[email protected]
Tye Hoffman
Development Assistant
Development support and database input
[email protected]
Erika Albini
Manager of Community Outreach
West Coast Region
Volunteer management and support
[email protected]
Gail Alexander
Office Manager
Assistant to CEO and oversight of office operations
[email protected]
Kari Luther Carlson
Executive Vice President
National Volunteer Outreach Program, Development
and Endowment Oversight
Alternate Phone: (763) 434-3455
[email protected]
Kenza Carrington
Administrative Assistant
General administrative support
[email protected]
Jaye Isham
Director of Communications
Strategic communications and marketing, publication
management, media relations and web development
[email protected]
Jo Anne Nakagawa
Director of Clinical Projects
Development and implementation of the TSC Clinical
Database Project and TSC clinics liaison
[email protected]
Donna Nichols, CPA
Finance, accounting
[email protected]
Diane Sinico
Director of Corporate and Foundation Relations
Donor prospect research, grant writing and donor
[email protected]
Jenny Smiley
Manager of Community Outreach, Mid-America
Volunteer management and support
Alternate Phone: (847) 531-6440
[email protected]
Katie Smith
Science Administrator
Science administrative support
[email protected]
William Tolentino
Development Coordinator
Development support, database management
[email protected]
Vicky H. Whittemore, Ph.D.
Vice President and Science Director
Scientific affairs and medical outreach
[email protected]
Janine Rauscher
Manager of Community Outreach, East Coast Region
Volunteer management and support
[email protected]
TSC Clinics
Boston, Massachusetts
Hartford, Connecticut
Philadelphia, Pennsylvania
The Carol & James Herscot Center
for Children and Adults with TSC at
Massachusetts General Hospital
To schedule an appointment contact
Zaida Ortega at (617) 726-0241.
Neurogenetics Clinic at Connecticut
Children’s Medical Center
To schedule an appointment, call
(860) 545-9460.
University of Pennsylvania Medical Center
To schedule an appointment, contact
Margo Aragon at (215) 349-5312
Loma Linda, California
Multi-Disciplinary Tuberous Sclerosis Program
Children’s Hospital Boston
To schedule an appointment with Mustafa
Sahin, M.D., Ph.D. in Pediatric Neurology,
call Jody Heffernan at (617) 355-2711.
The TSC Clinic at Loma Linda University
Medical Center and Children’s Hospital
To make an appointment, contact
Melinda Richardson, R.N. at
(909) 558-2383.
Children’s Hospital of Pittsburgh
To schedule an appointment, contact
Deborah Holder, M.D. at (412) 692-5528.
Chicago, Illinois
Los Angeles, California
University of Chicago
To schedule an appointment, contact
Sharon Morton at (773) 834-8064.
TSC Clinic at UCLA
To schedule an appointment, contact
Angela Perez at (310) 206-4037.
Cincinnati, Ohio
New York City, New York
Children’s Hospital Medical Center
Tuberous Sclerosis Clinic
To schedule an appointment or for
information, contact Melody Gulleman at
(513) 636-4222.
The Tuberous Sclerosis Center at New York
University Medical Center
To schedule an appointment, call Maria
Jiminez at (212) 263-8378.
The TSC Clinic Without Walls, a branch
of Minnesota Epilepsy Group & Children’s
Hospital and Clinics of St. Paul
For appointments, call Carol Hoskins,
RN at (651) 241-5290 or Elizabeth
Siqueland, R.N., at (651) 220-6745
Dallas, Texas
Oakland, California
Washington, DC Area
The Jack and Julia Center for Tuberous
Sclerosis Complex at Children’s Hospital and
Research Center at Oakland
To schedule an appointment, contact
Leslie Angeles at (510) 428-3885 ext. 4543.
Children’s Regional Outpatient Center,
Fairfax, VA
For information on the clinic or to
schedule an appointment, contact Nancy
J. Elling, RN at (571) 226-8343.
Texas Scottish Rite Hospital for Children
For appointments contact either Linsley
Burney, RN at (214) 559-7549 or
Catherine Thompson at (214) 559-7818.
19 S P R I N G 2 0 0 6
Pittsburgh, Pennsylvania
St. Louis, Missouri
St. Louis Children’s Hospital Division of
Pediatric Neurology
For appointments, call Terri DeVault or
Dawn Patterson at (314) 454-4089.
St. Paul, Minnesota
Tu b e r o u s S c l e r o s i s A l l i a n c e
20th Annual Charity Shrub Sale –
the Little Flower Sale that Could!
n 1987, when t hei r d au g hter
Colleen was one year old, Bert
and Sue Goodrich of Strasburg,
PA decided to hold a garage sale and
split the proceeds between the TS
Alliance (then NTSA) and the school
where Colleen attended an early infant
intervention program. Neighbors and
friends donated items, a nd ma ny
local Amish families provided homebaked goods. Bert’s employer, Star
Roses (now Conard-Pyle Nursery),
contributed 800 nursery plants, small
trees and bushes, and the event raised
a lmost $4,000,
ea sily surpa ssing
their modest $500
By 1989, t he
Goodrich’s little
sa le ra ised more Steve Hutton, Sue
than $13,000 for and Bert Goodrich
the TS Alliance and had outgrown
their backyard. The sale moved to
a lot owned by Conard-Pyle and
became a local tradition, occurring
t he Sat u rd ay of Memor ia l Day
weekend each year. Family Circle
magazine featured an article about
the sale and the phenomenal success
and the sense of community the sale
generated. By this time, Bert and
Sue had assembled an amazing core
group of volunteers that included
elementary, high school and college
students, neighbors, families, coworkers and even a married couple
from England who take their twoweek vacation every year to help set
up and participate in the sale. Steve
Hutton from Conard-Pyle became
not only the largest donor of plants
and trees for the sale, but attended
every year to answer questions and
help customers load purchases.
Fast forward 20 years to 2006
– Bert and Sue’s little venture has
Tu b e r o u s S c l e r o s i s A l l i a n c e
raised more than
$1 mi l lion over
the years for
t he TS A llia nce
and increased
awareness about
Tye Hoffman, Will
Tolentino, Nancy
TSC throughout
Taylor and Vicky
t he re g ion . For
t h i s ye a r’s sa le,
t hou sa nd s of people a s sembled
before dawn to be ready when the
gates opened at 6 a.m. Once again,
the 2006 sale was a rousing success,
raising more than $125,000.
to this local tradition. A few folks
asked if there was anything they
could do. W hen they discovered
that space and land were problems,
of fers arose for use of farmland
nearby. Steve Hutton also offered to
continue to provide plants and hope
was raised that maybe this may not
be the end of the sale after all.
Plans are still in the infant stage
for next year, and the Shrub Sale
may be slightly different. But it will
be no less important in the hearts
of all who it has touched. It is with
It is with great pride that the TS Alliance
thanks the Goodrich family for everything
they have and continue to do for everyone
affected by TSC.
But for Bu r t a nd Sue , t hei r
labor of love may come to end after
this year. Not only are the original
volunteers from elementary school
getting ready to ready to graduate
h i g h sc ho ol, but t he lot where
the sale was held for so long has
also been sold. So
Morning rush!
sadly, they tell the
TS A l l ia nc e a nd
a l l t hei r f r iend s
and neighbors that
this, the 20th year
of the sale, may be
the last.
Throughout the
day, disbelief and
d i s a p p o i nt m e nt
were hea rd f rom
many regular
participants about
the impending end
great pride that the TS A lliance
thank s the Goodrich fa mily for
everything they have and continue
to do for everyone affected by TSC.
And a special thank you to ConardPyle and Steve Hutton for their
unwavering support.
P E R S P E C T I V E 20
Special Events
Michicgan Walkers
thanks to Treasa and Matt Bolger for
chairing the walk and to our generous
sponsors: Summit Credit Services,
Inc., Cooper Insurance Center, The
Accident Fund, Universal Insurance
S e r v ic e s , Q u i z no s i n Fr a nd or,
Qu i z no s i n C a d i l l a c , Outba c k
Steakhouse, Carrabba’s Italian Grill,
The Bolger fa mily, Mr. & Mrs.
Steve Madden, Mr. & Mrs. Steve
DeBoer, Mr. & Mrs. Frank Hughes,
and University of Michigan football
player David Harris and his teamates.
We also extend our gratitude to Brock
Gutierrez, center for the Detroit
Lions, for his continued support.
Other Special Events
B a c k i n A pr i l, t he R a i nt re e
Ladies Club hosted a fundraiser
benef iting the TS Alliance at the
Raintree Country Club in St. Louis.
“It’s All About Hats” provided a
historical, entertaining, perspective
of women’s fascination with hats
t h rou g h t he a ge s wh i le r a i si ng
$10,000 for community support
prog r a m s a nd re s e a rc h to f i nd
a c u re . I n a le t ter f rom Ou id a
Bower and Sharon Steadman (who
beautifully chaired the event), they
shared, “It was specially enriching
for all of us to connect even more
w it h t he C ol e m a n f a m i l y a n d
to hope t h at ou r ef for t s m ig ht
make a difference to some child,
or Mom, or family somewhere.”
Debbie and John Coleman have a
daughter Megan with TSC. Debbie
and Megan also appeared in the
show. The TS Alliance is honored
by this meaningful support and
21 S P R I N G 2 0 0 6
cont in u e d f r om pa ge 4
Due to the efforts of Representative
Tim Moore, (R-Farwell), a House
Resolution in the Michigan House of
Representatives was passed declaring
June 24, 2006 (the day of the walk)
TS Awareness day in Michigan.
Thank you Representative Moore for
your continued support.
Western Pennsylvania Walk
On Saturday, June 25, the TS
Alliance of Western Pennsylvania
held its Third Annual Step Forward to
Cure TSC walkathon at Brady’s Run
Park in Beaver County. Walk Chair
Lori Shoup led an amazing group of
volunteers who brought together 200
walkers and raised $30,000! After
the walk, everyone enjoyed Pizza Hut
pizza (donated with the help of TSC
dad Mike Seman) while perusing
the wonderful silent auction items
and listening to the Ambridge High
School Steel Drum Band.
The TS Alliance of Los Angeles
staged its Second Annual Step Forward
to Cure TSC walkathon on June 25 at
Santa Clarita’s scenic Bridgeport Park.
A beautiful day helped attract 250
walkers who raised almost $50,000.
Congratulations and thanks to Walk
Chair Mike Johnson, his wife Nina,
Jeff and Jami Hoslet, and Ann and
Armando Manent. TS Alliance also
extends its appreciation to the LA
County Sheriff ’s Department for
their continued support.
thanks the major sponsors of this
event, US Bancorp, Alpha-Omega
C on s t r uc t ion C o, I nc . a nd St .
Anthony’s Hospital.
On May 7, t he TS A l l ia nc e
of New England hosted the f irst
Comedy for a Cure, Boston at the
Comedy Connection in Faneuil Hall.
Comedians Kelly McFarland and
Tony V joined Host Jimmy Dunn
for a comedy show and auction that
raised more than $50,000 for the
TS A lliance ! Six members of the
New England Patriots’ offensive line
attended along with representatives
from presenting sponsors Boston
Common Magazine and the Comedy
Connection. Thanks to Brandon
G o r i n , E r i c A l e x a n d e r, G e n e
Mruczkowski, Wesley Britt, Matt
Light and Billy Yates who, along
with other members of the Patriots,
signed a helmet for the live auction
and donated a set of four tickets
The New England Patriots’ offensive line
members at Comedy for a Cure, Boston.
to the season opener against the
Buffalo Bills. Congratulations to
Event Chairs Jeff Hargreaves and
Jane Ulwick for organizing such an
outstanding event!
It was an amazing Minnesota
evening to take in some great racing
at the Second Annual Rev It Up
for TS event presented by Cheerios/
Betty Crocker Racing, which was
Tu b e r o u s S c l e r o s i s A l l i a n c e
Special Events
cont in u e d f r om pa ge 21
Rev It Up committee members and sponsors.
held Raceway Park in Shakopee, MN
on June 25. This highly successful
racing-themed event earned $17,000
for the TS Alliance through ticket
sales, a silent auction, TS Alliance
merchandise sales and sponsorships.
The day included a premier silent
auction filled with racing memorabilia,
kid’s activities and an autographed
session with Craftsman Truck series
driver Erin Crocker. Honorary Chair
Chris Hawkey of KFAN radio was
the Master of Ceremonies. Chris
even took part in an exhibition 8lap race against Erin Crocker and
surprise guest Ray Evernham. Kudos
to Missy and Dan Anderson and their
committee for continued success with
this hugely popular event. Thanks
to a ll of our generous sponsors,
including Cheerios/Betty Crocker
Racing, Buffalo Wild Wings, KFAN
AM 1130, Joey D’s, and Raceway
Park. Special appreciation to Dick
Melius and Country Joe Racing for
their ongoing support of this event
and the TS Alliance.
Congratulations to Lisa Weaver,
(friend of the Iverson Family), for
organizing the Third Annual SPUNo-Palooza charity sports event. Held
July 21-22, SPUN-o-Palooza is a 24hour Ultimate Frisbee game in Darien,
Illinois that benefits the TS Alliance.
With 75 participants, the event raised
$ 5, 6 0 0 i n t he
f ig ht a ga inst
Tu b e r o u s S c l e r o s i s A l l i a n c e
On July 30, the roar of engines
could be heard from Harley
motorcycles revving up for the Third
Annual Ride For Liv Poker Run,
hosted by Streamwood firefighters
and benef iting the TS A lliance.
Three years ago, firefighters from the
Streamwood Illinois Fire Department
(co-workers of Jay Smiley), organized
the first Ride For Liv to help pay for
Olivia’s medicine. The Smiley’s deep
appreciation to the department for
their help in the past developed into
a request that the firefighters hold the
ride this year to help raise awareness
and funds for the TS Alliance. So
friends, firefighters and participants
from all around Illinois kicked their
Ride for Liv planning committee and volunteers.
bikes into gear at Woodstock Harley
Davidson in Woodstock, Illinois to
begin the ride. The run consisted
of a 100-mile round trip ride from
Illinois to Wisconsin with stops at
local bars (Elkhorn Saloon, Skinnys,
Doyle’s Pub, Kief ’s Reef ) to draw
their poker cards. The ride ended
at the Crystal Lake Holiday Inn
for their final poker card drawing,
a post-party picnic, raffle drawing,
and live music performed by 750 S.
State and Dogs Undecided. Special
thanks to all our generous sponsors
that made the ride an unforgettable
event for everyone: Alexian Brothers
Hospita l Net work, Strea mwood
Veterans of Foreign Wars (VFW)
5151, Mason’s Car Wash, McCaffrey
Development, A f fordable Pa r t y
Tent Rentals, Glass Medic, Y103.9
Greatest Hits Radio Station, Jeff &
Cathy Patenaude, Richard Tripoli,
and State Representative Terry Parke.
Thank you also to Ride Chair Darrell
Bice, volunteers and the Streamwood
firefighters and their families for their
ongoing support to the Smileys and
the TS Alliance.
At the Caddyshack Golf Tournament (L-R): Fran
Hiller, Sue Ruocco, Matt Hillier, Angelo Vakos
and Shonnie Johnson.
The 18th Annual PMA Caddyshack
Golf Tournament was held July
31 at Whitney Farms Golf Course
in Monroe, Connecticut. Despite
oppressive heat, the event raised
$5,000. Many old and new faces
attended the dinner and heard an
update on TSC research by Shonnie
Johnson. Congratulations to Fran
Hillier, Ray Klein, Lillian Berarducci,
Lenny Docimo and Angelo Vakos
for organizing another successful
For the third year in a row, Adelphi
Un iversit y St udent Fi na nc ia l
Services held a March 30 fundraiser
to benefit the TS Alliance in honor
of their colleague’s granddaughter,
Brianna LaVoun. This year they also
recruited the Caribbean Cultural Club
to help organize the event, which
included auctions for quilts and gift
certificates as well as a bake sale that
combined to earn more than $2,500.
TS A llia nce cha mpion Chris
Hawkey returned to his hometown
of Union City, which straddles both
the states of Indiana and Ohio, on
August 5 to perform at State Line
P E R S P E C T I V E 22
in uin
e du ef dr om
f r om
pa ge
pa ge
21 21
Brent Erickson,
Chris’ Dad
Dwayne Hawkey,
Robin Bousman
and Chris.
Herit a ge Days. To his surprise
and in honor of his devotion to
the TS Alliance, longtime friends
Brent Erickson and Robin Bousman
collected contributions from the
citizens of Union City and presented
Chris with a check for more than
$1,000 for his favorite charity. Thank
you Chris and to all the incredible
supporters from Chris’ hometown.
Upcoming Special
Saturday, September 16
Des Moines, Iowa Step
Forward to Cure TSC
Sunday, October 8
Washington, DC Step
Forward to Cure TSC
For more information contact Susan
Ballantine at (515) 288-8994 or
[email protected]
For more information please contact
Nathalie Simoneau at (301) 585-3038
or [email protected]
Saturday, September 16
Salt Lake City, Utah Step
Forward to Cure TSC
Saturday, October 14
Milwaukee, Wisconsin Step
Forward to Cure TSC
For more information contact Julie
Flem i n g at ( 8 01) 76 8 - 03 09 or
juliza[email protected]
For more information please contact
Pam Stzukowski at (414) 281-6383
or [email protected]
Sunday, September 24
Reading, Pennsylvania Step
Forward to Cure TSC
Saturday, November 4
Corpus Christi, Texas
Step Forward to Cure TSC
For more information contact Shelly
McFadden at (610) 375-1613 or
[email protected]
For more information please contact
Carol Valdez (361) 549-0275 or
[email protected]
Saturday, September 30
Faribault, Minnesota
Teeing Off Fore TSC Golf
Saturday, November 11
Tuscaloosa, Alabama
Step Forward to Cure
Tournament For more information
plea se contact Jim a nd Tabit ha
Wa l s h a t ( 5 0 7 ) 3 3 2 - 0 8 3 4 o r
[email protected]
23 S P R I N G 2 0 0 6
For more information please contact
Jenny Smiley at (847) 531-6440 or
[email protected]
A Night Out on
Broadway to Benefit
the TS Alliance
Julianne Moore
Research Fund for a
Julianne Moore will return to the
New York stage in the world premiere
of The Vertical Hour by British
play wright David Hare. Directed
by Sam Mendes, the play follows “a
young American war correspondent
turned academic teaching Political
Studies at Yale. A brief holiday with
her boyfriend in the Welsh borders
brings her into contact with a kind
of Englishman whose culture and
beliefs are a surprise and a challenge,
both to her and to her relationship.”
On Saturday, November 18, the
TS Alliance offers the opportunity
for you to enjoy a 2 p.m. matinee
of The Vertical Hour followed by
a private reception wit h specia l
guest Julianne Moore. A limited
number of tickets are on sale for
$250 with proceeds being directed
to the Julianne Moore Research
Fund for a Cure. To purchase your
tickets, visit the TS Alliance website,
tsalliance.org, or call Will Tolentino
at (800) 225-6872.
Tu b e r o u s S c l e r o s i s A l l i a n c e
Do you need gift wrap for birthday
presents or for holiday gifts this year?
The annual TS Alliance Gift-Wrap Campaign is here again to help you wrap those special gifts with beautiful,
quality gift-wrap paper and products made available through Sally Foster. Your continued
participation in the successful Gift-Wrap Campaign also helps support the Tuberous Sclerosis
Alliance’s mission to help those affected by tuberous sclerosis complex.
You may also register as a seller at www.sallyfoster.com by clicking on the link called
“Seller’s Section,” where you can link all your sales to the TS Alliance using our account
number: 0507100. You can send emails out to all your friends and family telling them
about the sale. A special link will be sent to them, and you will be credited for those
sales as well!
If you need a Gift Wrap brochure or to purchase directly, please contact
William Tolentino, Development Coordinator, at (800) 225-6872 or
[email protected]
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Visit the
TS Alliance Online Store
today at www.tsalliance.org!
Non-Profit Org.
U.S. Postage
Baltimore., MD
Permit No. 6440