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A MAGAZINE FROM THE TUBEROUS SCLEROSIS ALLIANCE
SUMMER 2014 | VOLUME 133
2014
WORLD TSC
CONFERENCE
REVIEW
801 Roeder Road, Suite 750
Silver Spring, MD 20910 USA
(301) 562-9890 Toll-free: (800) 225-6872
Fax: (301) 562-9870
www.tsalliance.org
SUMMER 2014 • Volume 133
Message from
the Leadership
Kari Luther Rosbeck
President and Chief Executive Officer
Jaye D. Isham
Kari Luther Rosbeck
President & CEO
Vice President, Communications Strategy
Managing Editor
Keith Hall
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.
Chair, TS Alliance Board of Directors
T
he TS Alliance is thrilled to
send you this ver y special
issue of Perspective, which
focuses on our recent 2014 World
TSC Conference, held July 3-6 in
Washington, DC. While you’ll read
much more about the conference
inside the magazine, we want to again
salute Conference Chair Janie
Frost for all her hard work organizing the event alongside Christen Bell,
Community Outreach Coordinator,
the Local Resource Committee and
the entire TS Alliance staff. The
closing dinner of the conference,
Blue Night , held many special
memories: a welcome from founding
mom Adrianne Cohen; presentations of a Lifetime Achievement
Award to Ken and Shonnie Johnson
for their incredible contributions to
the TSC community and Manuel R.
Gomez Awards to Drs. John Bissler
and Petrus de Vries for their significant impact on our understanding
of TSC in research and delivery of
clinical care for individuals with TSC;
and a compassionate performance
by the Chris Hawkey Band.
We also want to thank all presenters
and attendees for making the event
so meaningful. Be sure to visit www.
tsalliance.org/ConferenceVideos to
view the conference sessions online
for free. The conference’s theme –
Celebrate, Connect, Conquer – proved
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 2014 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
Keith Hall, Chair
Laura Lubbers, PhD, Vice Chair
David Michaels, Treasurer
David Fitzmaurice, Secretary
Matt Bolger, Immediate Past Chair
Martina Bebin, MD, MPA
John Bissler, MD
Julie Blum
Rita DiDomenico
Reiko Donato
Steven Goldstein
Linda Jackson
Brendan Manning, PhD
Celia Mastbaum
Ted Mastroianni
Darren Miles
Debora Moritz
John Nicholson, MD, MBA
Courtney O’Malley
David Parkes
Rebecca Anhang Price
Henry Shapiro
Judith Shoulak
Elizabeth Thiele, MD, PhD
Endowment Fund Board of Directors
Michael Augustine, Chair
MaryJane Mudd, Secretary
Rita DiDomenico, Treasurer
James Achterhof
Steven Goldstein
David Michaels
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to be an apt description
for everyone.
The use of topical rapamycin
cream to treat facial angiofibromas continues
to spark huge interest in the TSC community.
During the World TSC Conference, Dr. Mary
Kay Koenig provided an update about recent
studies on its use. She also wrote a summary
of the results, which you’ll find on page 24.
Facing tuberous sclerosis complex (TSC)
is something each person and family does
differently. On page 18, you’ll read the amazing personal story of a young adult with TSC,
Jake Irby, and how he decided to get more
involved with the TSC community.
The spring and summer Step Forward to
Cure TSC walkathon season is now over, and
we honor all the super heroes who supported the
events and made each of them so successful.
While the walkathons raise much-needed funds,
they also provide an excellent opportunity for
community building and spreading awareness.
We encourage you to consider attending a
local Step Forward to Cure TSC event this
fall if there’s one in your area.
Most of you may remember this year is the
TS Alliance’s 40th anniversary. We plan
to celebrate this milestone on October 23 in
New York City with a very special event called
“Four Decades | One Community.” Please see
page 14 for more information, and you can also
use the donation envelope in the middle of the
magazine to play a role in the event’s success.
In closing, we want to acknowledge the
many contributions to the TSC field made
by Ann Hunt, co-founder of the Tuberous
Sclerosis Association in the United Kingdom
and a previous Manuel R. Gomez Award
recipient. Ann was an advocate for defining
behavioral aspects of TSC and was responsible for bringing about the meeting of the
International Behaviour Consensus Panel that
led to the first consensus clinical guidelines
for the assessment of cognitive and behavioral
problems in TSC. The consensus panel was
comprised of experts in TSC from around
the globe. The guidelines they produced,
published in 2005, set the first gold standard
for assessment, monitoring and care of patients
with TSC in relation to the behavioral and
cognitive aspects of the condition. Ann died
earlier this summer and will be greatly missed
by the global TSC community.
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Special Events
“Never doubt that a small group of
thoughtful, committed, citizens can change
the world. Indeed, it is the only thing that ever has.”
Margaret Mead Go to www.StepForwardtoCureTSC.org
to register for a walk in your community.
Check back often for updated dates and
locations and take adavantage of the new,
easy-to-use online registration and online
fundraising software.
Step Forward to Cure TSC®
Nationally Sponsored By:
National
Honorary
Chair,
Julianne
Moore
Upcoming Fall Step
Forward to Cure
TSC Schedule
and teams raise funds through their local
participation in many ways. Some sent
emails with a link to their online personal
fundraising page requesting friends, family
and co-workers to support them. Others go
even further by holding car washes, bake
sales, ice cream socials at their workplace
and so much more.
Some examples are in Indiana, a
family held a lemonade stand and easily
raised more than $200. Others also
get their schools involved offering a
blue jean day for a donation, or hat day.
Selling bracelets, homemade duct tape
wallets, and so much more. How about
a pie eating contest? Or, garage sales,
donations in lieu of gifts at a birthday
party, restaurant nights with a portion of
proceeds going to the TS Alliance, and
more. The options are unlimited so get
creative, have fun and wear that super
hero cape—you deserve it!!
Another example is Abby Hase, who
turned her bracelet hobby into a fundraising activity for the Upper Midwest Step
Forward to Cure TSC. We are proud of
Abby for making and selling bracelets,
which helped raise an additional $480
for her walk team!
TS Alliance of the Carolinas
Date: September 27, 2014
Location: Jarvis Creek Park, Hilton
Head Island, SC
Event Chair: Amy Bredeson
[email protected]
Date: November 8, 2014
Location: Triad Park, Kernersville, NC
Event Chair: Planning Committee
[email protected]
TS Alliance of Heartland
Date: October 4, 2014
Location: Raccoon River Park, West
Des Moines, IA
Event Co-Chairs: Cindy & Ryan
Blackard
[email protected]
TS Alliance of
Intermountain West
Location: Liberty Park,
Salt Lake City, UT
Event Chair: Alisa Lambros
[email protected]
Step Forward
to Cure TSC
Super Hero
Supporter,
Patricia Heaton
Step Forward to Cure TSC teams and
super heroes are making a difference
across the nation this year! They are
pulling out their capes and masks and
increasing awareness and funds. Walkers
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TS Alliance of
Greater Kansas
City
Location: Celebration
Park, Gardner, KS
Event Co-Chairs: Dan
& Laurisa Ballew, Amy
Dublinske
[email protected]
Abby Hase
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Special Events
TS Alliance of Middle
Tennessee
Event Chair: Gwen Montaigne
[email protected]
Location: H.W. Cox Park, Collierville, TN
Event Chair: Brittany Schwaigert
[email protected]
Spring 2014 Results
TS Alliance of New England
TS Alliance of Greater
Alabama
Location: Auburndale Park,
Auburndale, MA
Event Chair: Stacie Verrill
[email protected]
Date: April 26, 2014
Location: Emmet O’Neal Library,
Mountain Brook, AL
Event Chair: Carole Pitard
Raised: $90,000
TS Alliance of New York
TS Alliance of Atlanta/
North Georgia
Location: Wantagh Park, Wantagh, NY
Event Co-Chairs: Denise & Rob Spear
[email protected]
Location: Onondaga Lake Park,
Liverpool, NY
Event Chair: Bridgett Langstaff
[email protected]
Date: May 10, 2014
Location: Marietta Square, Marietta, GA
Raised: $42,000
TS Alliance of Arizona
Date: April 26, 2014
Location: Eldorado Park, Scottsdale, AZ
Event Chair: Debora Moritz
Raised: $17,000
TS Alliance of Northern
California
TS Alliance of Greater Chicago
Date: November 15, 2014
Location: Heather Farm Park,
Walnut Creek, CA
Event Chair: Diane Burgis
[email protected]
Date: May 31, 2014
Location: Ty Warner Park, Westmont, IL
Event Co-Chairs: Geri Greenberg &
Lisa Smiley
Raised: $50,000
TS Alliance of Ohio
Date: May 17, 2014
Location: Lake Storey Recreational
Area, Galesburg, IL
Event Chair: Karen Johnson-Wenger
Raised: $9,600
Location: The Chalet, Strongsville, OH
Event Chair: Lori Quirino
[email protected]
TS Alliance of the Pacific
Northwest Region
TS Alliance of Connecticut
Location: Seward Park, Seattle, WA
Event Chair: Susan Jorski
[email protected]
Date: May 24, 2014
Location: Sand Hill/Nevers Park,
South Windsor, CT
Event Chair: Rebecca Flor Thereault
Raised: $22,400
TS Alliance of St. Louis &
Southern Illinois
TS Alliance of the Dallas/
Ft. Worth Area
Location: Cliff Cave Park, St. Louis, MO
Date: May 17, 2014
Location: Frisco Commons Park,
Frisco, TX
Raised: $50,000
TS Alliance of Delaware/
Lehigh Valley
Date: May 3, 2014
Location: Gring’s Mill, Wyomissing, PA
Event Chair: Shelly Meitzler
Raised: $6,400
TS Alliance of the
Delta Region
Date: May 3, 2014
Location: Forest Community Park,
Baton Rouge, LA
Event Chair: Temple Poche
Raised: $28,000
TS Alliance of Florida
Date: May 10, 2014
Location: Tropical Park, Miami, FL
Event Chair: Vanessa Vazquez
Raised: $5,000
TS Alliance of Houston
Date: May 3, 2014
Location: MacGregor Park, Houston, TX
Event Chair: Bill & Taska Fields
Raised: $70,600
TS Alliance of Indiana
Date: May 31, 2014
Location: Forest Park, Noblesville, IN
Event Chair: Pat Schmutte
Raised: $43,000
TS Alliance of Metro DC:
National Walk on the Mall
Date: July 6, 2014
Location: National Mall,
Washington, DC
Raised: $149,500
TS Alliance of Michigan
Date: June 21, 2014
Location: Granger Meadows Park,
Lansing, MI
Event Chair: Treasa Dunlap
Raised: $10,000
CONTINUED ON PAGE 25
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Government Relations Update
March on the Hill Results
The annual TS Alliance March on Capitol
Hill took place in early March 2014 to
advocate for continued Federal funding of
the Tuberous Sclerosis Complex Research
Program (TSCRP) via the Department of
Defense’s Congressionally Directed Medical
Research Program. More than 80 TSC
community members participated, asking
their Senators and Representatives to sign
Dear Colleague letters in support of the
TSCRP. In the House, 110 Democratic and
Republican Representatives signed the
bipartisan Dear Colleague letter of support
from Representatives Mike Fitzpatrick
(R-PA) and Loretta Sanchez (D-CA).
The number of signatures secured for the
Fitzpatrick-Sanchez letter greatly exceeds
the signature quantities in previous years.
The Senate letter, sponsored by Senators
Johnny Isakson (R-GA) and Chris Murphy
(D-CT), ended with 17 signatures.
At the time of print, the Defense
Appropriations Bill has been approved
in the House and approved within the
Senate Appropriations Committee and is
now awaiting approval by the Senate. The
current House bill approved funding for
the TSCRP at $6 million.
Let Your Voice Be Heard
interviews with a wide range of advocates
including an adult with TSC, a sibling,
parents and TS Alliance staff members.
We encourage you to visit www.tsalliance.
org/advocacy today to watch it.
Then please consider joining our
Government Action Team, so you can help us
secure Federal TSC research funding – all
from the convenience of your home. After
you join, we will show you how to use your
voice to support everyone living with TSC. You c an sign up online for the
Government Action Team by going to
www.tsalliance.org/ActionTeam.
Does it ever seem like there’s nothing
you can do to make a difference? We
understand your frustration, but you need
to know every single voice truly matters. Moreover, many voices joined together
can achieve action and create momentum
to make real, tangible differences in our
quest for better TSC treatments and,
ultimately, a cure.
During the recent 2014 World TSC
Conference, the TS Alliance debuted a new
educational video about the importance of
government advocacy. The video includes
School-Related Resources
TS Alliance Introduces
Educator Mentor Program
Being an educational advocate for you
child is not always easy. It is even harder
when educators have no clue about tuberous sclerosis complex (TSC). Sometimes
providing educators with information is not
enough; they may need more support than
just information. To solve this challenge,
the TS Alliance developed a new program
to help support educators in understanding
how to educate students with TSC.
The Educator Mentor Program is
designed to support administrators, teachers, and therapists educating children with
TSC. This program is an effort to support
educators and have better educational
outcomes for children with TSC.
This program is comprised of:
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Tu b e r o u s
and would like to help make a difference
for students with TSC please contact
Dena Hook at [email protected] or
1-800-225-6872.
• administrators, teachers, and therapists who have taught and worked
with a child with TSC;
• a parent of a child with TSC who is a
teacher, administrator, or therapist; and
• an adult with TSC who is an administrator, teacher, or therapist.
New TSC Publication for
College Students with TSC
The TS Alliance is also pleased to
announce a new publication for people
with TSC in college, called What College
Professors Need to Know About
Tuberous Sclerosis Complex. This
publication is designed to encourage
young adults to self-advocate at the college
level. College students can provide a copy
of this publication for all of their college
professors in an effort to educate them
in TSC. It can be downloaded at www.
tsalliance.org/YoungAdults.
This program also includes teachers
from pre-kindergarten through college
level, psychologists, speech therapists, and
occupational therapists. Since September
2013, this group has served more than 25
schools in an effort to ensure successful
outcomes for children with TSC.
The TS Alliance is looking for more
volunteers throughout the country. If you
are a therapist, teacher, administrator,
psychologist, or behavioral specialist
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Celebrate, Connect, Conquer: 2014 World
TSC Conference in Review
By Christen Bell, Community Outreach Coordinator
COVER STORY
T
he TS Alliance’s 2014 World
Tub erous S clerosis Complex
( TS C ) C o nfe re n c e wa s h e l d
July 3-6, 2014 at the Omni Shoreham
Hotel in Washington, DC. Attendees
from 20 countries across the globe
including families and individuals with
TSC; caregivers; healthcare professionals; researchers; a wide array of
exhibitors; and others interested in TSC
participated in this conference making it
a resounding success.
The need for a conference of this
magnitude was evident in the eight-year
hiatus from the TS Alliance’s last National
TSC Conference held in 2006. Since then,
tremendous changes have occurred in
clinical care and approved treatments,
including two approved indications to
shrink tumors associated with TSC in the
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brain and kidneys, and in 2012, updating
the TSC clinical consensus guidelines for
diagnosis, testing and treatment created
new gold standards in care. To acknowledge
this need, the TS Alliance began planning
another national conference two years ago.
This plan quickly morphed into addressing
the ever-expanding global TSC network and
became the 2014 World TSC Conference.
On July 2, the staff arrived at the hotel
to make preparations for the nearly 700
attendees yet to come. The excitement was
palpable as people began to arrive for an
experience of a lifetime. While many new
attendees arrived with uncertain feelings
and expectations, they were soon greeted
by an expansive TSC “family” ready and
waiting to embrace them into the community.
An experience like this one couldn’t
be outlined more eloquently than it was
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by Heather Lens in her blog following
the conference. “To be honest, I didn’t
know what to expect from all of the other
attendees. My first thought was that it might
be a somber setting. I mean all of these
families, including mine, have dealt with the
heartache that comes with this complex
disease. Would we all be depressed that
our lives had brought us to this place in life?
A place where an awful disease takes over
the organs of our child, spouse, parents
and so on? Would there be sad tears,
would there be a hopelessness flooding
the rooms of these sessions? I honestly
didn’t know what to be ready for.”
Her blog post continued, “As we walked
into our first session on Thursday evening,
I quickly realized that this group of people
was anything but hopeless. We were a
group that was eager to learn, a group
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that was willing to lend a
shoulder to cry on, we were
a group that would give everything
but up. We were all fighting for our family
members. We were there to arm ourselves
filled with smiles and eagerness to learn.
These rooms were filled with strength and
determination. Although most of us had
never met, it felt like we were attending a
large family reunion. It was so overwhelming
same fears all too well. I didn’t have to hide
my emotions because most of them felt
the same way we did.”
As attendees arrived on July 3, they
had the opportunity to join meet-and-
with all the knowledge and connections
that would help empower us to better care
for our loved ones. These rooms were
to be able to be in a place full of people
who understood. I didn’t have to try and
explain my fears because they knew those
greet sessions, attend TSC 101, and/
or attend the opening session of the
research track. The day concluded with
the opening dinner welcoming everyone
to Washington, DC and preparing them
for the experiences ahead.
The educational tracks of the conference were in full swing on Independence
Day, July 4, in the nation’s capital. With five
educational tracks plus group sessions
and meet-the-expert sessions, attendees
had a plethora of options for how to spend
their day. Even breaks in the educational
exhibit hall armed them with supplemental
information. By noon, attendees had been
updated on the TSC Clinical Consensus
Conference and heard world-renowned
experts educate them on topics ranging
from kidney issues to bone, pancreas,
teeth and spine manifestations in TSC.
“As we walked into
our first session on
Thursday evening, I
quickly realized that
this group of people
was anything but
hopeless.”
–Heather Lens | TSC Parent
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“The conference was very
well organized and provided
a variety of sessions that
pertained to different
disorders and issues. Even
though I try to stay informed
about my LAM and TSC,
I learned about many
breakthroughs in research
and upcoming trials.”
–Lindsey Golemon | Adult with TSC
And the information just kept on coming.
“The conference was very well organized
and provided a variety of sessions that
pertained to different disorders and issues.
Even though I try to stay informed about
my LAM and TSC, I learned about many
breakthroughs in research and upcoming
trials,” said Lindsey Golemon of Cypress,
TX. “I thoroughly enjoyed and benefited
from the sessions about LAM, Advocating
for Myself in Work and Life as an Adult,
and the kidney sessions. Not only were
the presenters knowledgeable, but they
simplified the information so it wasn’t
overwhelming.”
The professionals who presented over
July 3-6 donated 230-plus hours of their
time to the individuals, families and fellow
professionals at the conference. This time
was both valued and acknowledged by
many. Comments included:
“The medical professionals were in this
fight with us. They all had a passion for
TSC that was very obvious by the way they
spoke about new research and technology.”
“Speakers were outstanding!”
“The amiability and accessibility of the
speakers provided excellent information
and knowledge to me.”
“The thing I liked most about this
conference: families and professionals
together learning about TSC.”
In addition to the 48 educational sessions offered throughout the conference,
many social activities took place, including
those specifically for adults with TSC. Each
night there was an adult activity – July 3
was bingo, July 4 was the Adults with TSC
Panel and July 5 was a care and share
opportunity. These activities allowed adults
with TSC to network, share with others or
just relax and get to know one another;
there’s no doubt these opportunities were
a highlight for the adults in attendance.
TS Alliance Board of Directors Chair
Keith Hall, who is also an adult with TSC,
highlighted them as some of his favorites
about the conference. “I think the combination of interesting sessions coupled
with fun events were the reason so many
adults decided to attend this summer’s
“From an opening afternoon icebreaker to
the National Walk on the Mall on Sunday,
there were countless opportunities to
meet others facing similar challenges and
learn from their experiences.”
–Keith Hall | TS Alliance Board Chair
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blue bandanas, patriotic pinwheels, lawn
games, relaxing hammocks, and great
food and friends.
On Saturday, the celebratory 40 th
Anniversary Blue Night dinner soon
became a crowd favorite. First, one
of the TS Alliance’s founding moms,
Adrianne Cohen, gave a short but moving
welcome that touched on the organization’s
growth over the years. Next, Ken and
Shonnie Johnson were given a Lifetime
Achievement Award for their many, many
years of dedication to the TS Alliance and
the TSC community at large.
Finally, after the Manuel R. Gomez
Award winners were announced, the crowd
Ken and Shonnie Johnson with Kari Luther Rosbeck
TS Alliance founding mother, Adrianne Cohen
conference and enthusiastically participate.
From an opening afternoon icebreaker to
the National Walk on the Mall on Sunday,
there were countless opportunities to meet
others facing similar challenges and learn
from their experiences.”
The social events did not stop with
the adult activities. The very popular
teen lounge was stocked with an Xbox,
Play Station and Wii, as well as cards and
other entertainment for teens. This room
was for teens only, which allowed new
friendships to emerge and old friendships
to reconnect in a casual, low-key and
teen-friendly environment.
Each conference meal
also encouraged social interaction among the individuals
and families in addition to
the opportunity to learn more
about valued partners and
supporters of the TS Alliance.
Lunches included moving presentations by
David and Penney Parkes; Rick Guidotti of
Positive Exposure, who also photographed
the day camp attendees on July 4; and
lunch roundtable discussions led by both
staff and volunteers. The Fourth of July
Barbeque allowed participants to enjoy an
American cookout complete with red and
welcomed the Chris Hawkey Band to the
stage. Many guests may have seen the band
at other TS Alliance events, knowing well
the energy, passion and excitement they
bring to the TSC community. But for others,
including TS Alliance Communications Intern
Jenna Brady, the experience was a new
one. “When I think about my experience
at the World TSC Conference, I will always
think of Blue Night. The night began with
the TS Alliance staff handing out blue
glow sticks as people walked through
the doors. It was so much fun seeing the
ear-to-ear smiles on everyone’s faces
(including adults!) as they got their glow
sticks. During the dinner portion of the
event, I had the opportunity to listen to
all the awards and hear the journey and
progress that this organization has made
for TSC. It was fascinating to hear about
all the hard work that so many individuals
contributed to get this far. It gave me such
a warm and strong appreciation for the
dedication of this organization.”
“It was fascinating to hear
about all the hard work that so
many individuals contributed
to get this far. It gave me such
a warm and strong appreciation for the
dedication of this organization.”
–Jenna Brady | TS Alliance Communications Intern
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Chris Hawkey sings with the children.
“The children were able to forget about
their disease and enjoy the effect of
music by getting on stage with the Chris
Hawkey Band to sing and dance. Seeing
the joy on those beautiful children’s faces
brought tears to my eyes.”
Jenna continued, “But it was after dinner
when my favorite memory from that night
took place; a moment where the children
were able to forget about their disease
and enjoy the effect of music by getting
on stage with the Chris Hawkey Band to
sing and dance. Seeing the joy on those
beautiful children’s faces brought tears
to my eyes. I began this conference and
internship with no personal connection to
tuberous sclerosis complex and I left on
July 6 feeling so personally connected to
this organization and to those and their
families affected by TSC. I will never
forget the people I met and this incredible
experience. I am so fortunate to have come
across this community and I feel very
confident that I will continue my support
for the TSC community and TS Alliance
wherever life takes me.”
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After the excitement of Blue Night
ended, the sun came up for one last day
of the 2014 World TSC Conference. A
morning break out session, followed by a
closing keynote address from Dr. Gregory
Farber of the National Institutes of Mental
Health and Dr. Jeffrey MacKeigan of the
Van Andel Institute, led into one last hurrah
at the Step Forward to Cure TSC National
Walk on the Mall. While not all who attended
the conference were able to join the walkathon, and while
not all who joined
the National Walk
were able to attend
the conference,
it was merely a
different extension
of the larger TSC
family – equally
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empowered, equally passionate, and equally
driven to take on the fight that is TSC.
Those who shared their experiences
never missed a beat when it came to
explaining the value of meeting other
individuals and families affected by TSC.
“The best part for me was meeting
other families with TSC and beginning
wonderful friendships. This was the first
time I have gotten to know any other adults
with TSC. It feels amazing to have a support
system that understands exactly what I
am going through. I look forward to the
next conference, not only to learn more
about TSC, but to meet other fighters that
will never give up.” – Lindsey Golemon
“I was particularly excited to meet some
folks, families and medical professionals
in person that I had only previously met
online or spoken to on the phone… I
was glad to renew friendships I started
in 1999 and begin some new ones this
year.” – Keith Hall
“I was able to learn so much from the
people I met throughout the conference.
The interaction between the whole community: physicians, families, and the TS
Alliance staff’s dedication was one of
the most amazing things for me to see.
Everyone was so warm and welcoming
and interacted on such a personal level;
as if it were one huge support system. I
was so heart-warmed to see this strong
support because you really don’t see a
community like this anywhere else.” –
Jenna Brady
The information, resources and technology that surround TSC and its management
and treatment will always be evolving,
so that part of these conferences will
be ever-changing. But the relationships
forged and rekindled, the connections
spurred by likeness, and the bonds built
by hope shared, these will never change.
These will always be the reason why we
are the TSC community; why we are an
extended family; and why we will give
everything, but up.
To view hundreds of pictures from
the conference, visit
worldTSCconference.shutterfly.com.
fr o m
th e
Tu be ro us
S c l e ro s i s
Alliance
Thanks to Our Sponsors
The TS Alliance extends our deepest gratitude to the following sponsors and donors for their passionate support of the
2014 World TSC Conference. Their generosity made the experience possible.
Title Sponsor
Track Session Sponsors
Wi - Fi Sponsor
• Novartis Pharmaceuticals
Corporation
• Athena Diagnostics
• Children’s Hospitals and
Clinics of Minnesota
• Cyberonics, Inc.
• Chris and Joy Dinsdale
• Evan’s Awesome Team
• Friends of Ben Shapiro
• Metlife Center for Special
Needs Planning
• Minnesota Epilepsy
Group, P.A.
• Questcor Pharmaceuticals,
Inc.
• Upsher-Smith
Laboratories, Inc.
• Inspire
Presenting Sponsor
• The Rothberg Institute for
Childhood Diseases
Dinner Sponsors
• Lundbeck
• Brian and Sandra O’Brien
Lunch Sponsor
• Friends of Eric Parkes
Breakfast Sponsor
• Questcor Pharmaceuticals,
Inc.
Teen Lounge Sponsor
• ARMATURE Corporation
Information Packet
Sponsor
• Educational Concepts Group,
LLC
Program Book Sponsor
• Cyberonics, Inc.
Day Camp Sponsors
Adult Day Camp Room Sponsor
• Acorda Therapeutics
Manuel Gome z
Scholarship Sponsors
Children’s Day Camp Room
Sponsors
• Raymond Chan
• Michael and Janie Frost
General Session
Sponsors
• Biotechnology Industry
Organization
• Board of Directors for
Tuberous Sclerosis Alliance
and Tuberous Sclerosis
Alliance Endowment Fund
• Tuberous Sclerosis Canada
• Linsin, Blum and Pattis
Families
Meet-and - Greet Sponsors
Children’s Activity Sponsor
• Allan and Carla Price
• Jo Anne Nakagawa
Hospitalit y Room Sponsors
• Caribou Coffee Company, Inc.
• Friends of Eric Parkes
View 2014 World TSC Conference Session Videos Online
Since many of you were unable to
attend the 2014 World TSC Conference, it
is extremely important for the TS Alliance
to share the valuable information presented
throughout the event. We are very pleased
to offer 34 videos for free online viewing
at www.tsalliance.org/ConferenceVideos.
The videos are grouped by
the following categories:
• General Sessions
• Track A: Pediatrics
A
M a g a z i n e
f r o m
t h e
Tu b e r o u s
• Track B: Transition
• Track C: Adults
• Track D: Special
Issues
• En Español
The TS Alliance is thrilled
to offer these new online
resources and encourages
you to take advantage of the
vast amount of information
provided in them.
S c l e r o s i s
A l l i a n c e
•
S U M M E R
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11
Honorariums (January 2014 – May 2014)
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 acknowledgement of your kind donation can be sent. Tuberous Sclerosis Alliance honorarium
cards are also available if you would like to make a gift in honor of family, friends, or colleagues. To receive tribute cards, contact
Tye Hoffman at (240) 638 4643 or [email protected].
Tribute(s) for John R. Beattie
Licking County Foundation
Tribute(s) for Jacob Blood
Mr. and Mrs. William S. Blood, Sr.
Tribute(s) for Kevin Bodnar
Ms. Patricia Bodnar
Tribute(s) for Layne Boesiger
Mr. Philip Livengood
Tribute(s) for Matt W. Bolger
Ms. Marcia Bird
Tribute(s) for Elizabeth
Boussie
Mr. and Mrs. Martin McGladdery
Tribute(s) for Anthony Brewer
Ms. Jennifer Ceglecki
Ms. Maureen C. Covone
Mad World of Fitness, Inc.
Mr. and Mrs. Christopher
Papadopoulos
Ms. Sarita Rowner
Mr. and Mrs. Alexander Small
Mr. Sean Small
Mr. Gary Warner
Ms. Meiling Zoe
Tribute(s) for Howard Brewer
Mr. and Mrs. Gary Boomhower
Mr. and Mrs. Gregory Carbone
Tribute(s) for Derrick Brown
Mr. Gary Midkiff
Tribute(s) for Quinn Brown
Mrs. Cathy Homelvig Quatsoe
Mr. R.B. Waters
Tribute(s) for Brennan Carroll
Ms. Amy Trask
Tribute(s) for Nathan P.
Carroll
Mr. and Mrs. John R. Carlson
Tribute(s) for Diane Caserta
Ms. June C. Zack
Tribute(s) for James Caserta
Ms. June C. Zack
Tribute(s) for Abigail Cooper
Ms. Shari Cairncross
Tribute(s) for Amelia Cooper
Ms. Shari Cairncross
Tribute(s) for Maureen B. Corry
Mr. and Mrs. Patrick J. Roche III
Tribute(s) for Nathan M.
Darney
Mr. and Mrs. Michael G. Murray
Tribute(s) for Alexandra
Donato
Lawrence Smith Foundation
Tribute(s) for Artemesia
Drossos
Charles James Cayias Insurance, Inc.
Mr. K. Katsohirakis
Tribute(s) for Vasileos
Drosses
Charles James Cayias Insurance, Inc.
Mr. K. Katsohirakis
Tribute(s) for Kierstin
Dublinske
Mr. and Mrs. Michael Mathis
Tribute(s) for Kelly Duncan
Mrs. Val Aubol
Tribute(s) for Conrad Duprez
Dr. Rand Cottle
Tribute(s) for Danielle Duprez
Mr. and Mrs. Conrad Duprez
12
Tribute(s) for Jeremy Elias
Bill Avner Memorial Fund
Tribute(s) for Preston
Fitzgerald
Mrs. Sharon Fritz
Tribute(s) for John W.
Fitzmaurice
Mrs. Mary Jane Malone
Tribute(s) for Jameson Fox
Mr. and Mrs. Robert Billings
Mr. and Mrs. Jason Bowers
Ms. Jeana Chalbert
Mr. Richard Devincent
First Light Learning Center
Mr. and Mrs. James Laferriere
Ms. Patricia McClintic
Mr. and Mrs. Louis Neal
Mr. and Mrs. John Petrone
Mr. and Mrs. Russell Shilling
Mr. and Mrs. Shaun Stephens
Mr. and Mrs. Michael Strigel
Mr. and Mrs. Stephen Toniatti
Mr. and Mrs. Spencer Tullo
Ms. Angela Zender
Tribute(s) for Alison B. Gart
Mr. and Mrs. Gerald Friedman
Tribute(s) for Rebecca Gaunt
Booster
Tribute(s) for Kylie Jo
Gibbons
Anonymous
Tribute(s) for Meagan Golden
Ms. Lynn Wheeler
Tribute(s) for Geri Greenberg
Birthday Friends
Dr. Carlotta Hill
Mr. and Mrs. Bruce Leibow
Ms. Natalie Pelunis
Tribute(s) for Michael
Greenberg
Mr and Mrs. Bruce Leibow
Ms. Natalie Pelunis
Tribute(s) for Lera C.
Gremillion
Ms. Kelli Runnels
Mr. James Shoriak
Tribute(s) for Diane Gulas
Mr. Charles Gulas
Tribute(s) for Deanne J. Guy
Pleasant Valley United Methodist
Church
Tribute(s) for Avery Hart
Blue Cross Blue Shield of Kansas
Ms. Janet Colstrom
Mr. and Mrs. Gary Dayhoff
Fraternal Order Of Eagles Auxillary
Mr. and Mrs. MIchael Handly
Mr. and Mrs. Jeffry L. Hart
Mr. and Mrs. Robert Heck
Mr. and Mrs. Les Holthaus
Mr. and Mrs. Lowell Lindbloom
Mr. and Mrs. Myrl Lyon
Mr. and Mrs. Carl Meyer
Ms. Delores Robert
Mr. and Mrs. Louis Robert
Mr. and Mrs. L.J. Stephenson
Mr. and Mrs. Leroy Stromgren
Mr. and Mrs. James Thompson
Ms. Susan Thompson
Mrs. Cyndi Warren
Tribute(s) for Anna Hathaway
Mrs. Sharon L. Hathaway
Tribute(s) for John Heckman
Mr. and Mrs. Shane Heckman
Tribute(s) for Mathew Hillier
Ms. Patricia A. Gabriele
Tribute(s) for Elise Hoersch
U.S. Cellular
Tribute(s) for Benjamin
Hutchinson
Mr. and Mrs. Richard M. Russell
Tribute(s) for Jon Hyman
Ms. Anita Hoffman
Mr. David L. Hoffman
Tribute(s) for Carl E. Jensen
Northshore Learning Alliance
Tribute(s) for Annie Johnson
Mr. and Mrs. Walter Hoban
Mr. and Mrs. Ken Johnson
Mr. and Mrs. Stanley G. Miller
Mr. and Mrs. James J. O’Halloran
Mr. and Mrs. James J. Slattery
Mr. and Mrs. Lawrence H. Weinberg
Tribute(s) for Celie Johnson
Mr. and Mrs. Mat M. Johnson
Tribute(s) for Spencer G. Jones
Mr. and Mrs. Robert Braithwaite
Tribute(s) for Austin Kemski
Mr. and Mrs. Bill C. Moore
Tribute(s) for Jeremy Krantz
Ms. Lisa Lebduska
Tribute(s) for Deborah L.
Krecklow
Mr. and Mrs. David R. Krecklow
Tribute(s) for Cathy J. Krinsky
Laguna Beach Community Foundation
Tribute(s) for David A. Krinsky
Tribute(s) for Lauren E. Krinsky
Mr. and Mrs. Mark Disman
Tribute(s) for Hannah LaForte
Anonymous
Tribute(s) for Herbert
Lieberman
Dr. Maurice H. Laszlo
Tribute(s) for Samueal
Ludwig
Mr. and Mrs. Joe Ludwig
Mr. and Mrs. Mark Manning
Mr. and Mrs. Christopher Peterson
Tribute(s) for Nicholas F.
Lyons
Mr. George Snedeker
Tribute(s) for Arlene J.
Marszalowicz
Mr. Alex Marszalowicz
Tribute(s) for Alex Martin
Bradley Arant Boult Cummings, LLP
Tribute(s) for Carol Marton
Anonymous
Mr. and Mrs. Joseph Berger
Mr. and Mrs. Michael Bergstein
Mr. and Mrs. Ernest Braverman
Ms. Joanne DiMauro
Ms. Alice Goldfarb
Mr. and Mrs. Marvin Greenberg
Mr. and Mrs. Allan Heyman
Ms. Marilyn Kaback
Mr. and Mrs. William M. Kunreuther
P ER SP ECT I V E
•
S U M M E R
Dr. and Mrs. Jorge and Gaby J. Kurek
Ms. Phyllis Landau
Dr. and Mrs. Norman W. Lavy
Mr. and Mrs. Martin A. Lebson
Mr. and Mrs. Sam Levine
Mr. and Mrs. Sam Linder
Ms. Lila Lulinski
Ms. Rona Oberman
Ms. Sonya Oppenheimer
Dr. Arthur Peck
Mr. and Mrs. Daniel Rajchman
Mr. David A. H. Rapaport
Mr. and Mrs. Michael S. Rapaport
Mr. and Mrs. Myron Rapaport
Mr. and Mrs. Peter Rapaport
Mr. and Mrs. Sheldon Rich
Mr. and Mrs. Julian Roodberg
Mr. and Mrs. Stephan C. Rosen
Mrs. Doris Schipper
Mr. Michael Schoenbaum and Ms.
Elisa Rapaport
Dr. and Mrs. Martin Schub
Mrs. Ruth Seidenberg
Dr. and Mrs. Harold D. Singer
Mr. and Mrs. Henry Sperling
Summit Steel Corporation
Mr. Leonard Waldman
Ms. Patricia Werschulz
Mr. and Mrs. Seymour Zubkoff
Tribute(s) for Herbert Marton
Anonymous
Mr. and Mrs. Joseph Berger
Mr. and Mrs. Michael Bergstein
Mr. and Mrs. Ernest Braverman
Ms. Joanne DiMauro
Ms. Alice Goldfarb
Mr. and Mrs. Marvin Greenberg
Mr. and Mrs. Allan Heyman
Ms. Marilyn Kaback
Mr. and Mrs. William M. Kunreuther
Dr. and Mrs. Jorge Kurek
Ms. Phyllis Landau
Dr. and Mrs. Norman W. Lavy
Mr. and Mrs. Martin A. Lebson
Mr. and Mrs. Sam Levine
Mr. and Mrs. Sam Linder
Ms. Lila Lulinski
Ms. Rona Oberman
Ms. Sonya Oppenheimer
Dr. Arthur Peck
Dr. and Mrs. Irvin P. Pollack
Mr. and Mrs. Daniel Rajchman
Mr. David A. H. Rapaport
Mr. and Mrs. Michael S. Rapaport
Mr. and Mrs. Myron Rapaport
Mr. and Mrs. Peter Rapaport
Mr. and Mrs. Sheldon Rich
Mr. and Mrs. Julian Roodberg
Mr. and Mrs. Stephan C. Rosen
Mrs. Doris Schipper
Mr. Michael Schoenbaum and Ms.
Elisa Rapaport
Dr. and Mrs. Martin Schub
Mrs. Ruth Seidenberg
Dr. and Mrs. Harold D. Singer
Mr. and Mrs. Henry Sperling
Summit Steel Corporation
Mr. Leonard Waldman
Ms. Patricia Werschulz
Mr. and Mrs. Seymour Zubkoff
2 0 1 4
•
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M a g a z i n e
Tribute(s) for Matthew
Mastbaum
Dr. and Mrs. Frederick R. Gross
Tribute(s) for Hannah Mielnicki
Mr. and Mrs. Carl Mielnicki
Tribute(s) for Evan Moss
Mr. Dale Stein
Tribute(s) for Stephen P. Mroz
Mr. Ralph D. Jacobson
Tribute(s) for Mackenzie
J. Mudd
Ms. Anne Feltus
Tribute(s) for Lindsay K.
Mueller
Mr. and Mrs. Louis McCabe
Tribute(s) for Aiden Myers
Mr. Patrick O’Leary
Tribute(s) for Ben Naiztat
Mr. Erik Kolodny
Tribute(s) for Lauren Niemeyer
Mrs. Kris Niemeyer
Tribute(s) for Jeremy Orr
Mrs. Marcia Orr
Tribute(s) for Eric Parkes
Mr. and Mrs. Marc Blitzer
Mr. and Mrs. Larry Donsky
Mr. and Mrs. Brian Hurwitz
Ms. Debra Michaels
Mr. and Mrs. Rob Moss
Mr. Adam S. Parkes
RFR Realty, LLC
Dr. and Mrs. Saul Sloan
Mr. Tom Ruskin and Ms. Donna
S. Vitale
Tribute(s) for Charlie Peterson
Mr. and Mrs. Christopher Peterson
Tribute(s) for Paige Pfeiffer
Mr. Jerald Pocus
Tribute(s) for Eli Pinsonneault
Victoria S. Merlo
Tribute(s) for Will Piotrowski
Mrs. Mary Barber
Tribute(s) for Cynthia Pompeo
Mr. and Mrs. Ronald Pompeo
Tribute(s) for Ronny Pompeo
Mr. and Mrs. Ronald Pompeo
Tribute(s) for Brenda Porter
Johnson & Johnson
Tribute(s) for Jack Poutasse
Mr. and Mrs. Steven A. Lerman
Tribute(s) for Elena R. Quintana
Anonymous
Dominion Property Advisors
Mr. Nicholas Friend
Mr. David Quintana, Sr.
Ms. Geri Quintana
Mrs. Robin Quintana-Ramirez
Mrs. Shilpa Reddy
Tribute(s) for Colleen Rivers
Mr. and Mrs. John A. Virgilio
Tribute(s) for Harold A. Rosenberg
Ms. Hilda Hanin
Ms. Anita Rosenbloom
Tribute(s) for Marilyn
Rosenberg
Ms. Hilda Hanin
Ms. Anita Rosenbloom
Tribute(s) for Elana Rothberg
Dr. and Mrs. Henry Samson
Ms. Leah Samson
fr o m
th e
Tu be ro us
Tribute(s) for Sidney Rouse
Mrs. Carol Rouse
Tribute(s) for Kaitlyn R.
Sabedra
Mr. and Mrs. Steven Akiyoshi
Ms. Nancy Allen
Ms. Patricia Appell
Mr. and Mrs. Guillermo Arias Jr.
Mr. and Mrs. Marc Arnold
Associates in Early Intervention
Ms. Julie Becker
Ms. Pam Beckwith
Mr. and Mrs. Douglas Bedell
Mr. and Mrs. Arthur Buckman
Ms. Alma Cervantes
Ms. Theresa Choate
Mr. and Mrs. Don Crane
Mr. and Mrs. Vincent Criscione
Ms. Amy Curti
Mr. and Mrs. Abel DelValle
Mr. and Mrs. George Dittle
Mr. and Mrs. Walter Drumm
Mr. and Mrs. David Espinola
Mr. Emilio Estepa
Mr. and Mrs. Michael Farmer
Mr. and Mrs. Raymond Garnica
Mr. Jean-Pierre Gaspard-Michel
Mr. and Mrs. Victor Gutierrez
Mr. Jeffrey S. Hanna
Ms. Suzatte M. Holderman
Integral Design Concepts
Mr. and Mrs. Michael Jeffries
Joe A. Freitas & Sons, LLC
Ms. Paula Knight
Ms. Willowdene Lee
Ms. Linda Lewis-Luth
Ms. Stacey Mandel
Mark S. Adam, DDS
Michael W. Moats, MD
Ms. Jeralyn O’Neill
Pacific Christian Center
Mr. John E. Perry
Ms. Margarita Perry
Ms. Sandra Poag
Mr. Luis Quintana
Mr. and Mrs. Felipe Qunitana
Ms. Barbara Ramsey
Mr. and Mrs. Robert C. Regnier
Rendezvous Home & Garden
Mr. and Mrs. Frank Reyes
Mr. and Mrs. James Rogers
Mr. Mike Roland
Mr. John H. Sabedra
Ms. Cheryn Salazar
Santa Maria Associated Employees
Santa Maria City Fire Fighters
Local 2020
Santa Maria Driveline Service
Say It Write
Ms. Pattie Sceales
Mr. and Mrs. Terry Schmid
Mr. and Mrs. Joe Schmidt
Ms. Jeri Sousa
Mr. and Mrs. Michael Souza
Ms. Barbara Stanley
Ms. Joanne B. Szumski
Mr. and Mrs. Alan Tande
Mr. and Mrs. Sheridan M. Tande
Mr. and Mrs. Sherman Tande
Ms. Stacey Tande
S c l e ro s i s
Alliance
Dr. Botrous K. Tawadros
Mr. and Mrs. MJT Thompson
Mr. and Mrs. Randall Tognazzini
Mr. and Mrs. Michael Underwood
United Way of Santa Barbara County
Mr. Michael Villasenor
Mr. and Mrs. Robert Winter
Women of the Moose Santa Maria
Chapter 0463
Ms. Pamela Adkisson
Mr. and Mrs. Joseph Bravo
Mr. and Mrs. Sean Coffman
Ms. Lisa Cooper
Crosby Investment Group, LLC
Mr. Joseph Cuce
Mr. and Mrs. Phil DeHart
Ms. Kathy Fink
Ms. Carrie Foster
Mr. Eric Freitas
Ms. Kathleen Frost
Ms. Angelina Galvez
Mr. and Mrs. Paul Gilardone
Mr. and Mrs. Eugene Hamayasu
Ms. Catherine Johnston
Mr. and Mrs. D. Jorde
Ms. Julie Kerhulas
Mr. and Mrs. John Laframboise
Ms. June McAllister
Mr. and Mrs. Patrick McNamara
Orcutt Chiropractic Health Center
Mr. and Mrs. Stan Otremba
Ms. Linda Ann Penny
Qualcomm
Ms. Angelina Quintana
Mr. and Mrs. Edwin Quintana
Mr. and Mrs. Kevin Rhyne
Mr. Steve Sadler
Santa Maria Associated Employees
Santa Maria Elks Lodge No. 1538
Ms. Suzanne Thibodeau-Woelke
Ms. Karen White
Mr. David Wright
Tribute(s) for Leielle Saddik
The Ettenberg Foundation
Tribute(s) for Mildred M.
Sanders
JustGive.Org
Tribute(s) for Stephen Schmidt
Mr. and Mrs. David Schneller
Tribute(s) for Ian Schramek
Mrs. Donna Cardell
Tribute(s) for Kylie
Seggerman
Mr. and Mrs. Scott Seggerman
Tribute(s) for Zoey Seiling
Law Office of Cohen & Jaffe, LLP
Tribute(s) for Erika Seward
Anonymous
Mrs. Regina Griesemer
Tribute(s) for Benjamin Shapiro
Ms. Ana Belden
Ms. Julie Biggers
Ms. Tessa Blake
Mr. and Mrs. Craig L. Boyan
Ms. Joanna Brody
Ms. Heidi Brooks
Ms. Marni Burns
Ms. Ellen Cohen
Ms. Trisha Cole
Ms. Abigail Cooper
Ms. Ashley Cunningham
Mr. Jim Darby
Ms. Shari Davis
Mr. and Mrs. Leonard Dick
Mr. and Mrs. Rich J. Donato
Mr. Harry Dolman and Mrs. Chantal
Dussouchaud-Dolman
Ms. Brooke Eaton
Ms. Rose Einstein
Mr. Darren Elms
Ms. Karen Enzminger
Mr. and Mrs. Isaac M. Hammond
Ms. Samantha Haywood
Ms. Anita Hoffman
Edina Kiss-Dworak
Mr. and Mrs. Max Lambert
Mr. and Mrs. Kevin R. Martin
Mr. and Mrs. Alan Rakov
Ms. Joan Chu Reese
Kari Luther Rosbeck
Ms. Cecelia E. Yorke
Mr. Justin Yorke
Tribute(s) for Darius Sharon
Ms. Karin Gonzalez
Tribute(s) for Samantha
Sinclair
Mr. and Mrs. Bob L. Sinclair
Tribute(s) for Charlotte
Skillin
Mr. and Mrs. Tom Skillin
Tribute(s) for Drew Sklarin
Mr. David Grantz and Ms. Eve Adelson
Dr. and Mrs. Herbert P. Froehlich
Tribute(s) for Olivia Smiley
Insulation Products Corp
Mrs. Sandra Smiley
Tribute(s) for Anya S. Smith
Mr. and Mrs. Ramesh Bhatia
Tribute(s) for Matthew Snoep
St. Paul Evangelical Lutheran Church
of Boca Raton, FL Inc.
Tribute(s) for Declan Snyder
Mr. and Mrs. Kevin Snyder
Ms. Jennifer Stillman
Mr. Shawn Wooden and Ms. Biree
Andemariam
Tribute(s) for Adam Sullivan
Mr. Edward Harris
Tribute(s) for Shae Sunahara
Ms. Audrey Kiehm
Tribute(s) for Will Taylor
Spring-Ford 7th Grade Center
Tribute(s) for Mason Tebbetts
Mrs. Dorothy Tebbetts
Tribute(s) for Andrew R. Trundle
Mr. and Mrs, Michael Trundle
Tribute(s) for Michael Valdez
Mr. and Mrs. Fred Romero
Tribute(s) for Isabella Vigil
Ms. Patrilla Vigil
Tribute(s) for Riley Vogel
Mr. and Mrs. Douglas J. Van Dyke
Ms. Lisa A. Yesse
Tribute(s) for Madison Voit
Mr. Chris Voit
Tribute(s) for Jay P. Wareham
Mr. and Mrs. Richard D. Pace
Tribute(s) for Adrienne
Wasserman
Mr. and Mrs. Richard Stewart
Tribute(s) for Daniel Wasserman
Tribute(s) for Will Wasserman
Tribute(s) for Jacob Waugh
Ms. Lacy Spencer
Tribute(s) for Lila Wendling
Mrs. Christy Mooney
Tribute(s) for Elliot C. Wexler
Mr. Marc Cohen and Ms. Susan Wexler
Tribute(s) for Ilana Wiesel
Mr. and Mrs. Nachum Wiesel
Tribute(s) for Lindsey E. Wilson
Mr. Scott A. Wilson
Tribute(s) for Tyler Wooer
Mr. and Mrs. James D. Mitchell
Tribute(s) for Alyssa Youmans
Mr. Neil Alexander
Ms. Sandy Alexander
Mr. and Mrs. G. C. Davenport
PASCO
Mr. and Mrs. Philip P. Rhodes
Mrs. Jacqueline Youmans
Mr. and Mrs. John Youmans
Tribute(s) for John Zarbetski
Ladies of Unico - Kearny, NJ Chapter
Tribute(s) for Paul Zarbetski
Ladies of Unico - Kearny, NJ Chapter
Memorials (January 2014 – May 2014)
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.
Tribute(s) for Katherine
Bichsel
Mrs. Donna Cardell
Tribute(s) for Jared Biehl
Church of Christ
Mr. Elam Miles
Tribute(s) for Joshua W.
Bryant
Mr. and Mrs. James Bryant
Tribute(s) for Frances
Ciccarelli
Dr. Megan Everson
Mr. and Mrs. Stanley Kosalka
Mr. and Mrs. James Ortale
Mr. and Mrs. Neil Snowden
T-Graphics West, Inc.
Mr. and Mrs. Vincent Vanderburgh
Tribute(s) for Tom Ciccarelli
Mrs. Sylvia Cole
Tribute(s) for Glenn D. Croucher
Blue Cross Blue Shield of Kansas
Ms. Janet Colstrom
Mr. and Mrs. Gary Dayhoff
Fraternal Order of Eagles Auxillary
Mr. and Mrs. MIchael Handly
Mr. and Mrs. Jeffry L. Hart
Mr. and Mrs. Robert Heck
Mr. and Mrs. Les Holthaus
Mr. and Mrs. Lowell Lindbloom
Mr. and Mrs. Myrl Lyon
Mr. and Mrs. Carl Meyer
Ms. Delores Robert
Mr. and Mrs. Louis Robert
Mr. and Mrs. L.J. Stephenson
Mr. and Mrs. Leroy Stromgren
Mr. and Mrs. James Thompson
Ms. Susan Thompson
Mrs. Cyndi Warren
Tribute(s) for Debbie D’Olimpio
Ms. Catherine Pietrafitta
A
M a g a z i n e
f r o m
Tribute(s) for Wilma
Easterwood
Ms. Helen Easterwood
Tribute(s) for Heidi Erb
Mr. Jay B. Erb
Mr. and Mrs. Robert E. Gendreau
Tribute(s) for Shirley G. Esquith
Ms. Beth Abrams
Mr. Mark Bramson
Ms. Sheri Brown
Ms. Carol Cole
Mr. and Mrs. Patrick M. Donnici
Downey Publishing Inc.
Ms. Rochelle Follender
Ms. Karen Horowitz
Ms. Carolyn Loeb
Mr. Neill McFadyen
Dr. Niki Rudolph
U.S. Department of Education/OSHS
Tribute(s) for Ruth A. Glass
Feltz WealthPLAN
Mr. and Mrs. David E. Glass
Mr. Jeffrey A. Hurt
Ms. Joyce J. Hyden
Mr. Jeff S. Kramer
Mr. and Mrs. Joe H. Martin
Mr. and Mrs. Stephen R. Mason
Mrs. Jacqueline Youmans
Mr. and Mrs. Bill A. Youmans
Tribute(s) for Joseph Grasso
Mr. and Mrs. Robert Hockstein
Tribute(s) for Roger Greene
Mr. and Mrs. Lorne A. Johnson
Tribute(s) for Martha F.
Gruberman
Ms. Donna Bishop
Ms. Patricia Ivey
Tribute(s) for Margo Hamm
West Chicago Garden Club
t h e
Tu b e r o u s
Tribute(s) for Norma J.
Henningsen
Mr. Steven Taylor
Tribute(s) for Joey Holubowicz
Mr. Lee Pelletier
Tribute(s) for Robert E. Horton
Ms. Donna M. Morrow
Mr. and Mrs. Patrick A. O’Hanlon
Ms. Kathleen M. Palmer
Mrs. Josephine Pasquale
Mr. and Mrs. Joseph Weichman
Tribute(s) for Virginia Howlett
Ms. Audrey V. Bukowski
Tribute(s) for Lucille Huber
Mr. Steven J. Huber
Mrs. Shelley Morris
Mr. and Mrs. Matthew Publicover
Unum
Tribute(s) for Estelle Jacobson
Mr. Ralph D. Jacobson
Tribute(s) for Dorothy A.
Kingsbury
Mr. and Mrs. Rusty Chadderdon
Tribute(s) for Thomas W.
Lamberth
Mr. Roger K. Hux and Ms. Julia Krebs
Tribute(s) for Therese M.
Lewis
Anonymous
Mrs. Kayrene Anderson
Beckers Specialty
Mr. and Mrs. Daniel Donati
Ms. Gaililee Flores
Mr. Brian Gillespie
Mr. Christopher Golden
Mr. Dick Johnson
Mr. Charles Kakos
Mr. John Kroens
Mrs. Michelle Kudulis
Lisle Lions Club, Inc.
S c l e r o s i s
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•
Ms. Patricia Mathison
Mrs. Sandy Neuenkirchen
Mr. and Mrs. David Oncken
Mrs. Cheryl Pawlak
Mr. and Mrs. Joselito Rigor
Mr. and Mrs. Craig Schwartz
Sentinel Technologies, Inc.
The Levy Company
Tribute(s) for Sherril A.
Malesky
Mrs. Audrey Malesky
Tribute(s) for Sheila Marton
Dr. Herbert Marton
Tribute(s) for Caren Mazure
Dr. and Mrs. Leonard Minzer
Tribute(s) for Jason R. Mills
Mrs. Ann Childers
Tribute(s) for Devorah Elka C.
Moskowitz
Mr. and Mrs. Scott Moskowitz
Tribute(s) for Molly Niederman
Mr. and Mrs. Burton Bauman
Mr. and Mrs. Marvin Cohen
Tribute(s) for Brian Niles
Mr. Donoald Niles
Tribute(s) for Helen O’Donohoe
Ms. Marie Archibee
Mr. Rich Doyle
Mrs. Tracy Hayes
Mr. Phillip Jaeger
Mr. John A. Kay
Mr. Doug Kiernan
Mr. and Mrs. Gary Santorello
T&R Furniture Co. Inc.
Ms. Janet Whitcomb
Tribute(s) for Janet Olson
Mr. and Mrs. Steven Bennett
Mr. James Berzowski and Ms. Robin
Wyman
Ms. Rochelle Boersma
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Mr. and Mrs. Isaac Brewer
Cub Scout Pack 26
Mrs. Alicia Deal
Mr. and Mrs. Glendal R. Forgy
Mr. and Mrs. John Garcia
Ms. Rebecca Kane
Mr. and Mrs. Keith E. Kraft
Mrs. Jay Ann Maddux
Mr. and Mrs. Scott Olson
Ms. Tracy Pawlak
Ms. Anne Potkay
Mr. and Mrs. Philip F. Sherwood
Mr. and Mrs. Jay Smiley
Mrs. Sandra Smiley
Mr. and Mrs. James Stoltmann
Thomson Reuters
Ms. Patricia Weir
Mrs. Lisa Weisbrod
Tribute(s) for Marvin Potter
Mr. and Mrs. David W. Parkes
Tribute(s) for Ruth Potter
Mr. and Mrs. David W. Parkes
Tribute(s) for Kaycee Ragan
Mrs. Mary Fisher
Tribute(s) for Edward A.
Rauchut
Mrs. Ilga Rauchut
Tribute(s) for Henry M.
Rothberg
Dr. and Mrs. Henry Samson
Tribute(s) for Albert Salt
Ms. Betty Bunnell
Ms. Doreen Fraser
Ms. Elsie Grime
Mr. Thomas Hall
Mr. and Mrs. James Sheehan
Tribute(s) for Margaret
Sassman
Mr. Donald Buckbee
Ms. Brigitte Dinaberg
Ms. Jean Findlay
Ms. Kelly Lonigan
Mr. and Mrs. Fred Meyette
Mr. and Mrs. Robert Schnetz
Ms. Sandra Thompson
Ms. Judith Wilbur
Tribute(s) for Dorothy Seward
First Presbyterian Church
Tribute(s) for Stevie Sewell
Mrs. Ann Adams
Tribute(s) for Jerry Short
Ms. Susi Burwell
Tribute(s) for Ruth Smith
Tribute(s) for Elaine M. Turner
Quinones
Mr. David Turner
Tribute(s) for Mabel B. Ward
Mrs. Ann Adams
Tribute(s) for Henry Wolf
Tribute(s) for Lora L.
Woodward
Ms. Donna W. Woodward
Tribute(s) for Beverly J. Xavier
Tribute(s) for Roland Youmans
Mr. and Mrs. Robert B. Bradley
Devinny Social Committee
Mr. and Mrs. Charles E. Ferrell
Mr. and Mrs. John Frahlich
Ms. Ursula Garcia
Mr. and Mrs. David E. Glass
Mr. and Mrs. James Harsha
Mr. George Popelka
Mr. and Mrs. Roy Renicker
Mr. and Mrs. Philip P. Rhodes
Ms. Mary Shrader
Mr. and Mrs. John Youmans
Mr. and Mrs. William A. Youmans
13
Tuberous Sclerosis Alliance 40th
Anniversary Celebration
T
o cap off the TS Alliance’s 40th
Anniversary year, we will host a
unique celebration in New
York City at the Hudson Theatre,
Millennium Broadway Hotel on
October 23, 2014. We hope
you will join TS Alliance founding
mothers Adrianne Cohen and
Susan (Diaz) McBrine for a walk
T
he 40th Anniversary Celebration
begins at 6 p.m. with a cocktail reception and heav y hors
d’oeuvres. At 7 p.m., we pay tribute to
our esteemed honorees, along with a
brief TS Alliance presentation and live
auction. At 8 p.m., the world premiere
reading of the play Four Decades | One
Community begins.
Four Decades | One Community is
the cornerstone of the 40th Anniversary
Celebration. Award-winning playwright
John Morogiello conducted 22 interviews
with individuals and family members
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through the past forty years of hope and
changing lives. Abe and Celia Mastbaum
At the event, we are thrilled to honor
Abe and Celia Mastbaum and Drs .
Jonathan and Bonnie Rothberg
of The Rothberg Institute for
Childhood Diseases. Through
their extraordinary commitment,
these honorees have helped us
reach profound progress in the
Drs. Jonathan and Bonnie Rothberg, The Rothberg
Institute for Childhood Diseases
fight against TSC.
impacted by tuberous sclerosis complex
as well as healthcare professionals who
made a significant contribution to research
and clinical care. The result: a play about
a group of individuals who formed an
alliance to combat this disease over the
past forty years. It is by no means every
story. But together, these powerful stories
represent the battle of four decades and
one community.
The Hudson Theatre sits in the middle
of Time Square and a fitting location to
commemorate our history with the play.
Four Decades | One Community is a
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professionally produced night of theatre
amid the background of Broadway.
Performers scheduled to appear in the
reading of the play include our celebrity
spokesperson Julianne Moore, Stephen
Belber, Mo Collins, Liza Colón-Zayas, Kate
Flannery, Lori Gardner, Chris Hawkey,
Angela Pierce, and Alex Skuby.
We wish to express our gratitude to
the performers’ unions—Actors’ Equity
Association, American Guild of Musical
Artists, American Guild of Variety Artists,
and SAG-AFTRA through Theatre Authority,
Inc.—for their cooperation in permitting
fr o m
th e
Tu be ro us
S c l e ro s i s
Alliance
the artists to appear on this
program.
If needed, the TS Alliance reserved
a room block at the Millennium Broadway
Hotel, located at 145 West 44th Street,
mention the TS Alliance for a reduced
room rate of $339. For more information,
please contact Dee Triemer at dtriemer@
tsalliance.org.
which is also where the Hudson Theatre
is located and the event takes place. If
you want to reserve a room with the
special reduced rate, please call (212)
789-7546 by September 22, 2014 and
It’s a unique event you don’t want to miss, and there are multiple
ways to get involved by visiting www.tsalliance.org/4decades
or please see this magazine’s donation envelope, which offers
options to support this momentous 40th Anniversary Celebration,
including the following options:
Purchase 40th Celebration
Program Book Commemorations
Honorary Name Listing $40 ($25 tax deductible)
List a name on the tribute page in program (name only, i.e. Ashley Triemer).
Purchase an acknowledgement ad for a loved one, a
tribute to our honorees, or in celebration of the founding
mothers of the Tuberous Sclerosis Alliance
• Full Page Ad: $1,500 ($1,493 Tax Deductible)
• Half Page: $750 ($743 Tax Deductible)
• Quarter Page: $500 ($493 Tax Deductible)
Buy an Event Ticket
Individual Tickets $350 ($167 tax deductible)
• Seating for 1 in balcony section
Be an Event Sponsor
Become a sponsor and help us continue to fuel community programs and breakthrough research.
Patron Sponsor $1,000 ($609 tax deductible)
• Seating for 2 in the VIP balcony section
• Quarter Page Ad in the playbill program and a copy of the program
Bronze Sponsor $2,500 ($1,743 tax deductible)
From top left: Julianne
Moore, Stephen Belber, Mo
Collins, Liza Colón-Zayas,
Kate Flannery, Lori Gardner,
Chris Hawkey, Angela Pierce,
and Alex Skuby
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Seating for 4 in the VIP 1st balcony section
Logo on event signage and collateral materials
Special recognition during the evening’s presentation
Quarter Page Ad in the playbill program and a copy of the program
Silver Sponsor $5,000 ($3,877 tax deductible)
•
•
•
•
VIP orchestra section seating for 6
Logo on event signage and collateral materials
Special recognition during the evening’s presentation
Half Page Ad in the playbill program and a copy of the program
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New Gomez Award Winners Named
T
wo new Manuel R. Gomez Award winners were announced during the 2014 World TSC Conference – John J. Bissler, MD
and Petrus J. de Vries, MBChB, MRCPsych, PhD. The Manuel R. Gomez Award is given in memory of Dr. Gomez who spent
his career providing clinical care and studying tuberous sclerosis complex (TSC) at Mayo Clinic in Rochester, MN. Recipients
receive the award for their extraordinary clinical, scientific and humanitarian efforts to find a cure for TSC while improving the lives
of those affected. John J. Bissler, MD
Petrus J. de Vries, MBChB, MRCPsych, PhD.
Dr. Bissler is Co-Director of the TSC Clinic at LeBonHeur
Children’s Hospital in Memphis, TN. He was nominated for the
Gomez Award because he “paved the way for the understanding
and treatment of kidney disorders in individuals with TSC. He
has written numerous research publications, which include basic
science up to and including the first approved kidney treatment
for TSC. Many TSC families and individuals have also benefited
from the advice and nurturing of Dr. Bissler. He has provided this
guidance, often by email and telephone. This is so important to
the many families and adults who either live in areas where there
are no experts, or parents who need a second, expert opinion.”
Petrus de Vries, MBChB, MRCPsych, PhD, is a renowned
developmental neuropsychiatrist at the University of Cape Town,
South Africa. Dr. de Vries was honored for his initiation and
ongoing contributions to researching the behavioral aspects
of TSC. His nominator wrote, “The behavioral aspects of TSC
are some of the most challenging issues families have to deal
with. These issues include outbursts, autistic type behaviors,
self-injurious behaviors, as well as violence towards others. Until
recently, there was very little discussion, let alone research for
this aspect of TSC. Many families including my own, felt very
alone, with very little support from our individual community, as
Former Gomez Award recipient Dr. Vicky Whittemore
(left) with Dr. Petrus de Vries.
well as the surrounding medical community, until Dr. de Vries
initiated research in this area. On a personal note, our family has
had significant issues with behavior over the years. Dr. de Vries
has always been more than willing to consult with us, and offer
advice and suggestions.”
Dr. John Bissler with his Gomez Award.
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Congratulations and thank you Dr. Bissler and Dr. de Vries.
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TS Alliance Endowment Fund: Plan for
Retirement With a Gift Annuity
I
f you want to help the people we
serve who have tuberous sclerosis
complex, lighten your tax bill and
plan for retirement, you may want to
consider a charitable gift annuity. You’ll
not only feel good about supporting the
TS Alliance Endowment Fund, but you’ll
also receive income tax advantages and
an additional source of funds for your
nonworking years.
Depending on your situation, you
may consider deferring your payments.
The following example illustrates how
receiving your payments immediately or
deferring them to a later date affects your
tax benefits and payment rates.
Fund that provides payments to both of them
for life and thereafter uses the remaining
portion of their gift to help their favorite
charitable cause. Now they need to examine
their financial circumstances to see when
they would like to start receiving their
payments. The table below demonstrates
three options they are considering.
Example: Sara and
Tom’s Gift Annuity
Their Choice
Sara, 64, and Tom, 68, want to create
a $50,000 charitable gift annuity with the
Tuberous Sclerosis Alliance Endowment
Because Tom and Sara estimate
they’ll both be retired in about 5 years,
Ages when payments begin
Rate
Payment amount
Approximate income tax deduction*
64 and 68 (immediately)
4.3%
$2,150
$14,215
70 and 74 (in 6 years)
5.6%
$2,800
$18,802
74 and 78 (in 10 years)
6.9%
$3,450
$22,487
they choose to defer their gift annuity
payments for 6 years, when they’ll most
likely be living off a lower, fixed income
and will appreciate the boost of receiving
gift annuity payments.
To discuss gift annuities in greater
detail, please contact Director of Donor
Relations Lisa Moss toll-free at (800)
225-6872 to learn more.
* Based on annual payments and a 2.4 percent charitable midterm
federal rate. This example is for illustration purposes only. Actual
calculations will vary depending on the donor’s date of birth
and the timing of the gift. Please contact us for a customized
illustration.
© The Stelter Company
The information in this publication is not intended as legal or tax
advice. For such advice, please consult an attorney or tax advisor.
Figures cited in examples are for hypothetical purposes only and
are subject to change. References to estate and income taxes
include federal taxes only. State income/estate taxes or state law
may impact your results.
A
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Adults with TSC Corner
Why I Decided to Post My Story
on Facebook
By Jake Irby
I
t was late one night and I had just
finished my homewor k . Having
recently talked to my girlfriend about
my disorder, a passion for tuberous
sclerosis complex (TSC) in my life
shined so I decided to share it with the
TS Alliance world.
I’m Jake Irby and I was diagnosed
with TSC when I was an infant (around 2
years old). After countless seizures, mom
and dad knew something was going on.
My parents were mortified when they got
the news—they had no idea what it was.
“Tuberous what? ” Talk about a tongue
twister.
Like chickens with their heads cut off,
my parents searched relentlessly to find a
doctor that knew exactly what they were
talking about. Our second opinion led us
to landing in the hospital that changed
my life—Texas Scottish Rite Hospital for
Children in Dallas. To combat the seizures,
doctors immediately placed me on seizure
medicine, Tegretol being the one I remember
because of the terrible taste; in fact, I can
still taste that gross stuff. Two years later,
I was seizure-free. Other than that, my
visits consisted of numerous checkups that
included CT Scans, MRIs, and ultrasounds
for the first 18 years of my life. It became
a tradition—a family trip to Dallas.
The visits were not that bad though,
as many would think. I felt at home. What
really stood out to me were the awesome
connections with Dr. Mauricio Delgado,
the multiple interns dropping their jaws
at how mild my case of TSC was while
observing my checkup, visits to the popcorn
stand and cafeteria with my family, stops
by the gift store at the conclusion of our
appointments, and the fun times I had at
the hospital playground with my brother
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growing up. It was never bad. I enjoyed my
annual visits. As a matter of fact, it feels
weird not going to Scottish Rite anymore
as a 21 year old. Is that why I posted on
the TS Alliance Facebook page? Because
I miss Scottish Rite? Well, that’s part of it,
but it’s not the main point.
There were times in the hospital
when I felt guilty when I met others with
the disease. He
or she has TSC
and so do I, but
why do I have to
have a mild case?
I wasn’t physically or mentally
limited at all. I
li ve a nor ma l
life. The only
setback I have
gone through is
not being able to
play football due
to head to head
contact, which
didn’t hold me
back from playing
college baseball
at Concordia University in Austin. Nor did
TSC hold me back from pursuing a major
in Business Marketing. It didn’t hold me
back from getting a marketing internship
and another internship this summer.
Why did I get so lucky? I have the same
condition as other people, but why can’t
they live a life like mine? But then I kept
thinking. I’m no different. I may have the
capabilities of doing more things physically
and mentally than others with TSC, but I
stand right next to them in the daily fight.
I want to stand next to them when they
are feeling down.
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I also have adversity that I face. That’s
what you call life. Life is about building
relationships and having people to support
you through those hard times. That is my
purpose and why I posted on Facebook.
Since I don’t have those setbacks, I want to
use my abilities to give the patients across
the severity spectrum and their parents hope
and support through the process. In a way,
I am no different
than them. I have
been in their shoes.
I have done a million CT scans, MRIs
and ultrasounds. I
had doctors telling
me to jump on one
foot, walk on my
heels , open my
mouth wide and say
“AHHH,” and tell me
when my followup
appointment is. I
have taken blood
more times than
I have pitched in
baseball games it
seems. I want to
share my story and I want to impact
peoples’ lives.
I don’t take my condition for granted,
because regardless of the fact it won’t
affect me in the future as much as others,
it has affected me growing up. It will affect
me when I’m deciding to have a kid one
day, and I’m not ashamed of this! There is
a reason I was diagnosed with this, and I
believe I’m getting closer to finding it. I’m
Jake Irby. I have TSC and I’m proud.
If you’d like to join TS Alliance’s
Facebook Discussion Group, please visit
www.tsalliance.org/FacebookGroup today.
fr o m
th e
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S c l e ro s i s
Alliance
Roller Coaster of Life
By Frank Cenna Jr.
All of us are born with expectation
We adjust our dreams and hopes due to realization
Our lives become malleable like a statue of clay
Sometimes stronger, other times taller, that’s what others say
Life became a roller coaster ride
The heights we ascend abide
Raise our hopes
The dips our lives we cope
We are never truly alone
We become uncertain because the path we leave isn’t shown
Hold on and open eyes, search familiar sight and surely we’ll see
It’s better to remain for the entire ride, we’ll whole heartedly agree
Observed from above ready to be captured like a lost dove
Brought to earth for another try in the glove
We become brave and strong until ultimately we’re ground in heavenly glare
Remaining silent enjoying a short rest awaiting the final decision made with stunned stare
On board the car we can hope for a safe and short ride
One track those who are daredevils look for a thrilling side
On the other, a certain group belted-in safely are glad to be alive
Non risk-takers there snuggled in in their cars happy to arrive
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19
TSC Research Roundup
TSC and Sun Warning
In an article published in Human
Molecular Genetics, Advance Access
December 18, 2013, a team of researchers
showed UV radiation in sunlight contributes
to the development of facial angiofibromas
in TSC. This observation suggests that
including a broad-rim hat, 3) applying
generous amounts of a broad-spectrum,
water resistant sunscreen with SPF 30 or
greater to sun-exposed areas, and 4) not
using tanning beds.
measures recommended to the general
public to minimize UV exposure may be
even more important for those with TSC.
These measures include: 1) seeking shade,
particularly between 10 a.m. and 2 p.m.,
2) wearing clothing that blocks sunlight
Join the Rare Epilepsy Network Registry
The Rare Epilepsy Network Registry,
funded by PCORI, will soon open for
enrollment, and we will need as many
families as possible to participate in
order to make this successful and useful
for us all. The TS Alliance is fortunate to
be involved in such a great organization
as the REN, so let’s make the most out
of this, by providing as much information
as we can. This registry is unique in that
it is patient-driven and patient-centered.
Please take a moment to read a bit about
it and consider participating and help all
and completion of surveys. The registry will
also create the infrastructure for future
research such as clinical trials. All of the
research will be patient-centered, which
means it will address research questions
and topics that are important to the patients
and caregivers with the ultimate goal of
having patients and caregivers better able
to participate in healthcare decisions. You
may stop participating in the research at any
time. We will make another announcement
wen the registry is open for enrollment so
please stay tuned.
of those living with TSC and other Rare
Epilepsies.
The Rare Epilepsy Network, or REN for
short, is a collaboration between the Epilepsy
Foundation, RTI International, Columbia
University, and many different organizations
that represent patients with a rare syndrome
or disorder that is associated with epilepsy
or seizures. The REN will establish a registry
of these patients , which includes patient or
caregiver-reported data in order to conduct
patient-centered research. This research
will be in the form of natural history studies
Donate Newly Lost Teeth for Cell Research
Dr. Lawrence T. Reiter at the University
of Tennessee Health Science Center in
Memphis, TN is conducting a research study
to determine if neurons can be grown from
the dental pulp of individuals with various
neurogenetic syndromes including tuberous
sclerosis complex. Participants will be required
to submit a genetics report describing their
neurogenetic syndrome or control status.
Dr. Reiter will provide a tube of cell growth
solution and a return package to you at
no cost. Should you agree to participate
you will only need to provide a fresh tooth
specimen, most likely one that fell out on
its own. Teeth must arrive at Dr. Reiter’s
laboratory no more than 48hrs after the
time they came out of the mouth and in the
special media provided. For more information
on how to participate, please contact Dr.
Nora Urraca at [email protected] or Dr.
Reiter at [email protected].
Clinical Trials Recruiting
If you are a person with TSC or have an
affected family member who is interested
in participating in a clinical trial, the TS
Alliance lists new and ongoing studies
at www.tsalliance.org/ClinicalTrials as
well as announcements on Inspire and
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A Clinical Trial Sponsored
by Novartis for Treatment
of Seizures (2-65 yrs):
A Placebo-Controlled
Study of Efficacy &
Safety of 2 TroughRanges of Everolimus
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as Adjunctive Therapy in
Patients with Tuberous
Sclerosis Complex (TSC)
& Refractory Partial-Onset
Seizures (EXIST-3)
This is a clinical trial being conducted
at more than 100 locations around the
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world. The purpose of the study is to
evaluate the effectiveness and safety of
two dose ranges of everolimus as add-on
therapy in persons with tuberous sclerosis
complex and uncontrolled partial-onset
seizures who are 2-65 years old (except in
Europe the minimum age is 1). For more
information go to www.ClinicalTrials.gov
and in the Search for Studies box, type
“EXIST-3” or contact Jo Anne Nakagawa at
[email protected] for assistance.
Early Biomarkers of Autism
in Infants with Tuberous
Sclerosis Complex (TSC)
Where : TSC Clinic al Research
Consortium sites at Boston Children’s
Hospital, Cincinnati Children’s Hospital,
University of Alabama at Birmingham,
University of California at Los Angeles,
University of Texas at Houston
Principal Investigators: Mustafa
Sahin, MD, PhD (Boston), Darcy Krueger,
MD, PhD (Cincinnati), Martina Bebin, MD
(Birmingham), Joyce Wu, MD (Los Angeles),
Hope Northrup, MD (Houston)
We are enrolling 3-9 month old infants
with a diagnosis of tuberous sclerosis
complex (TSC) for a new study on early
markers of autism. The goal of this project
is to use behavioral testing, MRI and EEG
techniques to identify children at risk for
developing autism starting at 3 months of
age and continuing until 36 months of age.
Who is eligible to participate?
Infants diagnosed with TSC will be eligible
to participate in this study if they are
between the ages of 3 and 9 months of
age (under 10 months).
What will we do? If you agree to
participate, the research team will obtain
your informed consent. The study involves
up to seven visits to a study site over a
three year time period. The study visits
will include behavioral testing, MRIs and
EEGs. Parents will be with their child at
all times.
Cost/time commitment: Study visits
will vary in length based on your child’s
age, but generally be a few hours in time.
There is no fee to participate in this
study. A voucher for parking and meals
will be provided to you at each study visit.
Travel funding may be available.
Results: Summary scores of your
child’s behavioral testing, MRI and EEG
results will be provided to you. Every step
of the way, if new results from the testing
are concerning, we will notify you and assist
you in obtaining referrals or interventions,
if you choose. After all study data has
been analyzed, we will inform families of
the overall results.
Contacts: If you are interested in
learning more about this study, please
send an email to [email protected] or visit
www.tscstudy.com for contact information
at each study site.
with TSC. Up to 60% of children with TSC
develop autism, but the diagnosis typically
is not made until much later in childhood.
Early detection leads to earlier interventions
and, hopefully, better behavioral outcomes.
We hope that the knowledge gained from
this investigation will ultimately lead to
earlier diagnosis of autism in infants with
and without TSC.
We hope to follow each infant for
a few visits at either at University of
California, Los Angeles or Boston Children’s
Hospital over his or her first 3 years of life.
Scheduling of these visits is very flexible
and based on your needs. Study visits
include behavioral measures, event-related
potentials (ERPs), a neurological exam,
and EEG. A subset of these measures is
conducted at each visit.
There is no fee to participate in this
study. Families will be compensated for
their time, and travel and parking can be
compensated. Children will also receive
a small toy at the end of each visit to the
lab. If during the testing, we detect any
abnormalities that may warrant further
interventions, you will be notified. After all
data has been analyzed, families will be
informed of the overall results of the study.
Enrollment in this research study has
begun at both sites. Interested out-ofstate families are welcome to participate
at either the Los Angeles or Boston site,
and compensation may be available for
travel costs.
If you are interested in participating
in this study at either Boston or UCLA,
please send an email to tsc.development.
[email protected] or call 617-678-7348.
They will reimburse all travel costs (up to
2 flights) as well as hotel, rental car and
also provide funds for meals.
Early Screening for Autism
in Tuberous Sclerosis
Complex (TSC)
UCLA and Boston Children’s Hospital
are seeking volunteers to participate in
their research study, read below for more
information:
We are currently conducting a study
at University of California, Los Angeles
(UCLA) and Boston Children’s Hospital
for children diagnosed with Tuberous
Sclerosis Complex (TSC) 0 months old
and up to 3 years of age.
The main goal of this research project is
to look for early signs of autism in children
Are You or Your Loved One Suffering from Behavioral
Symptoms of Tuberous Sclerosis Complex?
The Clinical Trials Unit at Kennedy
Kieger Institute in Baltimore is enrolling
for a research study entitled, “Rapalogues
for Autism Phenotype in TSC (RAPT):
A Feasibility Study.” They are looking
A
M a g a z i n e
f r o m
t h e
Tu b e r o u s
qualifies, please contact the study team
at (443) 923-3850 or ResearchTrials@
kennedykrieger.org. Tanjala T. Gipson,
MD is the Principal Investigator.
for participants, ages 2– 30 years, who
have TSC and disruptive behaviors to
determine if a rapalogue may be helpful.
If you are interested in learning more
about or seeing if you or your loved one
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Legacy of Love
By Alexis Marie Chute
W
22
hen I first discovered organizations like the TS Alliance, I
was shocked. It sounds silly,
but I did not realize that people could live
with tuberous sclerosis complex (TSC).
It was a revelation to me since my son
had TSC—and died.
When I was 25 weeks pregnant with
my second child, my blissful ignorance
a baby’s body when the heart is unable
to pump properly.
These discoveries began what would
be a month and a half long journey of
daily hospital visits to try to save my child.
When the doctors gave their diagnosis,
tuberous sclerosis complex, I didn’t know
how to respond. I had never heard of the
complex before. I researched and learned
despite dire medical predictions. The
doctors told us Zachary would be stillborn.
They said his heart would eventually stop
and by 30 weeks it was down to 50 beats
per minute. The normal fetal heart rate
typically ranges from 150 to 180 BPM.
That was also the time that my body began
experiencing mirror syndrome, mimicking
Zachary’s, and my abdomen and legs filled
about motherhood was permanently
smudged by the discovery of my baby’s
irregular heartbeat. A follow-up ultrasound
revealed a large tumor wrapped around
my unborn child’s heart, plus other cysts
and tumors throughout his brain and
kidneys. His body was also swollen from
hydrops fetalis, the fluid that builds up in
about the markers, how the diagnosis is
made and the similarities between people
who share the genetic trait. None of it
altered my love; I was a mother fighting
for her child.
In that time, my husband Aaron and I
named our son—Zachary, meaning remembered by God, became our constant prayer
with fluid. I measured ten weeks farther
along than I was, my skin ached and stretch
marks spread like red lightening.
With the worry for my health, I was
scheduled for induction, which meant that
I could no longer carry my child. It also
meant he would die. The night before my
induction, I watched TV trying to distract
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myself from what was to come the next
day. All of a sudden I felt sharp pains in
across my stomach that I knew all too well
from a year before when I was in labor with
my first child, Hannah. We went into the
hospital that night and Zachary was born
naturally the next morning.
Zachary lived for a few minutes. He
was 36 gestation but he weighed over
seven pounds because of the hydrops. His
face was swollen and he had the telltale
reddish freckles of TSC on his face. He
was so beautiful in my eyes. I kissed his
forehead and stroked his hands and feet.
My husband and I held Zachary to our skin,
rocked him, and sung to him. He made
When life falls apart,
humans possess a
deeply innate urge
to rebuild. I find this
wildly encouraging.
Through this reflective
and creative work,
and by interacting
with others who
both participated
and viewed the art, I
came to understand
that everyone has
their own unique
challenges to bear.
small movements before dying in my arms.
That was October 14, 2010.
The next nine months were spent in
a season of genetic testing where Aaron,
Hannah and I were poked, prodded and
scanned to see if we too shared the
genetic abnormality discovered in Zachary.
I remember so clearly an appointment
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as precariously balancing houses of cards
helped me reflect on all I’d been through;
the delicate balance of life and the human
desire for growth and control.
For a year spanning the end of 2012
and the beginning of 2013, I was the Artist
in Residence at Harcourt House Gallery
and Artist Run Centre. As an organization
they believe in the healing capacities of art
and gave me the space and time to hone
my work. I created sculptures, paintings
and photographs that came together in a
series I call The Quiet Rebuild. The artwork
focuses on what I believe is one of the
most compelling characteristics of the
human experience: resiliency.
When life falls apart, humans possess
a deeply innate urge to rebuild. I find this
wildly encouraging. Through this reflective
and creative work, and by interacting with
others who both participated and viewed
the art, I came to understand that everyone
has their own unique challenges to bear.
I also learned that people are stronger
together, when the burdens are shared,
so that we may learn from each other.
The photography in The Quiet Rebuild
grew into a creative project that seeks to tell
the stories of many types of struggle and
loss. I put the call out for volunteer models
on Facebook and Twitter and have had a
tremendous response. The portraits enrich
the healing process for those involved and
speak similarly to viewers as well. Writing
too has been a healing modality for me
and one that often merges with my visual
work. These areas have become my way
of giving back and a heartstring to keep
Zachary’s story alive in the world. The
compassion to help others is my son’s gift
to me and his lasting legacy. I feel honored
to be his mother.
with a specialist where I recounted my
family’s recent medical experience to
which the doctor responded, “Strange,
most people don’t die from tuberous
sclerosis complex.” I didn’t know how to
process his words. That was the first time
I had ever heard that TSC meant anything
other than death.
I searched online and found different
national and international organizations and
family blogs about TSC. My understanding
was opened and I felt a kinship with others
for the first time in an experience that began
in an isolating and confusing manner. As
I read about the affected men, women
and children, I imagined what Zachary’s
life would have been like if he had lived.
Now, TSC is an inescapable part of
my story as a mother and as a woman.
It is also a part of who I am as an artist
and writer. At the time that Zachary’s
cardiac failure was discovered, I did not
know how to process the diagnosis and
began photographing the daily exams and
appointments at the hospital, the waiting
rooms, and ultrasound machines, along
with Hannah playing and the regular parts
of our life that no longer seemed to make
sense in the context of our ‘new normal.’
These fine art documentary images became
a series I named Unfulfilled Precognition,
which are now exhibited in creative centers
and galleries.
Despite these early photographs taken
before and after Zachary’s death, in the
months that followed I pulled back from
my artwork into what I now call my Year of
Distraction. It was a time where I tried to
fill my life with work and activity to avoid
the ache in every part of my being that
longed for my child. I was brokenhearted
and could not yet carry the torrent of
emotion at that time.
It was only in returning to my artwork
at the end of that year that I began to
appreciate the amazing capacity of creativity
in finding healing and working through
difficult emotions. Without a preconceived
plan, I began making sculptures out of
small square and rectangular cuts of wood.
Working with my hands was cathartic and
witnessing the sculptures grow from one
piece of wood to what has been described
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Alexis Marie Chute is an award
winning visual artist, photographer, writer, and advocate for
the use of arts in healing. Her
upcoming memoir is about letting
go of one child while her stomach
grows with another. Alexis lives in
Alberta with her husband and two
children. Please visit her website:
www.AlexisMarieChute.com
•
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Update on Use of Topical Rapamycin to
Treat Facial Angiofibromas
By Mary Kay Koenig, MD, Co-Director, TSC Clinic,
The University of Texas Medical School at Houston
U
p to 90% of people with TSC
develop skin tumors on the
face called facial angiofibromas. These tumors appear as red
or pink spots located mostly over the
nose, cheeks, and chin. The redness
is due to increased blood vessels in the
skin. The angiofibromas may spontaneously bleed if not removed or treated,
and they often cause patients to feel
self-conscious about their appearance.
Multiple procedures, including laser
therapy, have been developed to control these lesions; however, these treatments can be painful, form scar tissue,
and over time, new angiofibromas will
come back.
At the University of Texas TSC Clinic,
an endeavor to develop a safe, inexpensive,
treatment for patients with facial angiofibromas was undertaken. A topical cream
containing rapamycin costing between
$50-$100 a month was developed to
allow an open label study to be launched to
discern if this formulation would improve
facial angiofibromas. One hundred seventy
four subjects were enrolled at 10 clinical
sites throughout the United States and
one site in Australia (University of TexasHouston, Jack & Julia Center in Oakland,
University of California Los Angeles, Texas
Scottish Rite Hospital, TSC Clinic Without
Walls in Minnesota, University of Alabama
Birmingham, Cincinnati Children’s Hospital
Medical Center, Kennedy Krieger Institute
in Baltimore, The Carol and James Herscot
Center for Children and Adults with Tuberous
Sclerosis Complex in Boston, and Sydney
Children’s Hospital in Australia). One-third
of the enrolled subjects were placed on
vehicle cream (no medicine), 1/3 of subjects
were placed on low dose treatment (0.1%
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Preliminary results are promising, but final
conclusions regarding efficacy must be
deferred until final data analysis.
rapamycin), and 1/3 of subjects were
placed on high dose treatment (1.0%
rapamycin). Subjects were instructed to
apply their study cream to their faces each
night with follow up evaluations over the
course of the next 6 months.
Preliminary results are promising, but
final conclusions regarding efficacy must be
deferred until final data analysis. Although
a few subjects report burning or itching
when they apply the cream, there have been
no major complications and the rapamycin
is not being absorbed. The anticipated
time course for finalizing data analysis and
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publishing results is by the end of the year.
All of our investigators are grateful to both
the Tuberous Sclerosis Research Program
at the Department of Defense and to the
Australasian Tuberous Sclerosis Society
for their support of this study.
The topical formulation is now
available via prescription through
Doyle’s Pharmacy in Houston, Texas
(www.doylespharmacy.com; email:
[email protected]). Please
contact them for more information on how
your physician can submit a prescription.
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Special Events
TS Alliance of Southern
California
TS Alliance of Middle
Tennessee
Date: May 3, 2014
Location: Two Rivers Park, Nashville, TN
Event Chair: Kelly Vigil
Raised: $820
TS Alliance of Ohio
Date: July 19, 2014
Location: Thomas A Cloud Park,
Huber Heights, OH
Event Co-Chairs: Lola & Carl Centeno
Raised: $5,000
TS Alliance of the Rocky
Mountain Region
Date: June 14, 2014
Location: EB Rains Park, Northglenn, CO
Event Co-Chairs: Caroline Clough,
Leslie Byers & Dana Holinka
Raised: $13,500
Other Event
Success Stories
This year’s Comedy for a Cure©, held
March 30 at LURE in Hollywood, CA, raised
$205,000 for the TS Alliance! Over the
last 13 years, the event has raised nearly
$4 million cumulatively. This year’s event
honored The Lauren Krinsky Family and
TS Alliance President & CEO Kari Luther
Rosbeck for their tireless commitment
and dedication to support families living
with TSC.
A
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Join our Circle
of Champions and
be entered into a
nat i o na l dr aw ing
to win a flat screen
TV. (Rules: Any individual raising $10,000 or
more will be honored in Perspective in our
Circle of Champions listing. In addition,
any individual who raises $10,000 or
more through online donations, checks,
cash or matching gifts qualifies for the
national drawing to win a Big Screen
Plasma HDTV. The deadline for submitting donations is the day of your walk
by turning them in at the registration
table. Qualified winners will then be
entered into a national drawing selected
by our President & CEO Kari Luther
Rosbeck on December 1, 2014. Date: May 17, 2014
Location: El Dorado Park – East,
Long Beach, CA
Event Co-Chairs: Barb O’Neil &
Dawn Redfield
Raised: $75,500
TS Alliance of the
Upper Midwest
Date: June 8, 2014
Location: Central Park- Jaycees
Shelter, St. Paul, MN
Event Co-Chairs: Maria Gibbons &
Jody Prudhomme
Raised: $40,000
TS Alliance of Wisconsin
Date: May 10, 2014
Location: Regner Park, West Bend, WI
Event Chair: Kristin Champagne
Raised: $5,700
Mo Collins headlined the evening’s
show, supported by hilarious performances
by Kate Flannery, as well as comic Jerrod
Carmichael. The funny, warm and talented
Jim O’Heir served as emcee. Auctioneer
acknowledge
C o m e d y fo r a
Cure’s major
sp o nso r s w h o
made the Lucky
13th Comedy for
a Cure possible,
including C&C
Market Research,
Lundbeck, Questcor, Variety, CVS Caremark,
eWorks, Glacier Design Systems, Jim and
Andrea Maginn, MarketCast, Novartis, The
Szilagyi Family, 20th Century Fox, WNC
& Associates, US Bank, BJ’s Brewhouse,
Classic Party Rentals, Edina Kiss and Zing.
Damon Casatico once
again led the live auction,
where attendees bid on
items ranging from custommade jewelry from Edina
Kiss to a trip to Scotland.
The TS Alliance
would like to gratefully
Racing for a Cure! David Comeau
is playing and working hard at raising
awareness for TSC at Stafford Motor
Speedway in Connecticut. Last year
alone with his race car, he accomplished
the following:
»» Achieved Rookie of the Year
Award
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Special Events
of her birthday. Christy
dedicated her
training runs
to individuals with TSC
sharing their
stories and
triumphs via
social media. Many were instrumental in
inspiring her training, but none more than
her son, Ben. Congratulations for raising
$15,000-plus for the TS Alliance and on
a great finish at the marathon!
»» Finished 5th in points for the
season after winning the last race
of the year
»» Created weekly race videos utilizing an “in car camera” and posted
the videos on YouTube
»» Raised awareness of TSC on and
off the track
On April 26, 2014, Kim Sabreda ran
a marathon in San Luis Obispo, CA. Her
friends and family showed their support
with ama zing turn out
to cheer her
on during the
race and with
their donations. Kim
raised more
than $15,000
in funds that
she donated to the TS Alliance in honor
of her daughter, Kaitlyn. Way to go Kim!!
The Vogel family held their 4th Annual
Rock 4 Riley fundraising event on May
Congratulations David on your fundraising and awareness building and keep up the
good work as we race ahead for the cure!
10 in Woburn, MA. This year was heavily
focused on raising awareness by sharing
TSC—specific details on posters around
the building. Over 300 people attended
to enjoy live music, bid on silent auction
items and raffles. The group had a blast at
the party while raising $33,500 for the TS
Alliance. The Vogel family is grateful for the
generous support and sponsorships from
Blue Cross Blue Shield of Massachusetts,
Harvard Pilgrim Healthcare, and Energi
Insurance.
On June 28,
2014, the annual
Geneva Lakes
Amazing Race
took place. The
race began on
the grounds of Inspiration Ministries in
Walworth, WI and wound its way through
the back roads of Walworth County. This
year, over a dozen teams competed for a
week long dream vacation. They solved
clues, conquered challenges and generally
had a great time racing for those who
can’t. Congratulations to all involved in
this spectacular event for raising more
than $20,000!
The Loonin family hosts a 4th of
July party each year in their neighborhood
where friends and family can gather to
On March 9, 2014, the 21st Annual
Pampered Chef Auction hosted by Pam
Sztukowski was a tremendous success.
Attendees enjoyed raffles and auctions,
while bringing hope to thousands of
families living with TSC. Thank you Pam
Sztukowski and all volunteers for all their
help in putting together a wonderful event
and raising an amazing $6,141.
On April 6, 2014, Christy Hobart
ran the Paris Marathon in celebration
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watch fireworks, enjoy each other and
make a difference in the lives of those
living with TSC, including their grandson,
Drew. Eight years ago, after noticing that
the fireworks shown in a local park could
be seen from their backyard they decided
to have a July 4th Fundraiser for TSC
inviting their friends and neighbors to see
the fireworks, have a drink, some snacks
and hot dogs and help to FIND A CURE
with their donation. Congratulations and
tons of gratitude to them for raising more
than $2,565 this year.
Upcoming Events
Step I: Visit www.tsalliance.org/ArtforaCure
then decide what you want to create for
the contest. You can pick any medium
of art. Paint, sculpt, sketch, photograph,
whittle, knit, sew, weld, write, finger paint,
mosaic, paper mache’—any project that
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On July 20, 2014 the inaugural
Strikeout TSC Softball Tournament
was held in Queensbury, NY. There were
14 teams playing to raise awareness and
funds for the TS Alliance. Congratulations
to all the teams
for raising over
$10,000. Thank
you to Laura
Laramie for organizing this fantastic
event in honor of
her niece, Nola!
TSC
Champi ns
On July 19, 2014 the 6th Annual TSC
Tournament for TSC Champions was
held at Black Hawk Golf Course in Beaver
Falls, PA. Many thanks to Jim Hartge
and Lori Shoup for hosting the event
and making it a success year after year.
Congratulations on another successful
year raising funds and awareness of TSC!
Tournament of Champions at River
Glen Country Club in Fishers, IN. Golf
tournament proceeds will benefit the TS
Alliance. For sponsorship opportunities
and registration information, please contact
David Cowlin at [email protected].
lets you express yourself artistically. Age
categories are: 0-11, 12-20; and 21 years
old and over.
Register now! Get out your markers,
oils, pencils and art supplies for the Third
Annual Art for a Cure! This competition
is open to all individuals diagnosed with
tuberous sclerosis complex (TSC). Review
the basic three steps below to get started
and enter in our fun and exciting search
for the 2014 Art for a Cure top artists!
The most popular pieces will be sold at
the 40th Anniversary Celebration in New
York City on October 23, 2014.
Art for a Cure is a web- and social
media-based artist competition open to
anyone with TSC. The contest is a great
way to easily raise funds for the TS Alliance,
raise awareness of TSC and display
your artistic skill. For more information,
contact Dee Triemer, Director of Special
Events and Corporate Partnerships at
(800) 225-6872 or [email protected].
A
Tournament for
Step II: Create your masterpiece. Make
sure you complete every part by yourself. Kids will need a parent’s/guardian’s
supervision and permission.
September 28, 2014: Ironman
Chattanooga – Reiko Donato. Help
support Reiko Donato as she participates
in the Chattanooga Ironman this fall.
Cheer her on with a donation as she
swims for 204 miles, bikes for 112 miles
and runs for 26.2 miles consecutively.
Please support her incredible effort with
a donation by clicking the online Calendar
of Events at www.tsalliance.org.
Step III: Enter the online competition.
Register online at www.tsalliance.org/
ArtforaCure. Upload your artwork; tell
your stor y; remind your friends and
family to vote!
Step IV: Get your vote in today at
www.tsalliance.org/vote as voting closes
on September 15, 2014!
October 11, 2014: Wicked Mud
Run III at Ski Ward in Shrewsbur y
includes a 5K race timed event with
multiple heats of 50-75 runners per
heat. Teams are welcome. There will be
beer, food, a great band, and wonderful
sponsors. Medals for all finishers. Cash
prize for top male and top female. Ten
percent of net registration proceeds will
go Autism Speaks, Tuberous Sclerosis
Alliance, and Big Nick’s Ride for the
Fallen. For more details or to register online, visit www.racemenu.com/
event/42191-Wicked-Mud-Run-III.
September 6, 2014: Will’s Quest—
Ultra Running Grand Slam. Help
support Will Cooper, Jr. as he runs four
100-mile races in 2014 to raise TSC
awareness and funds for the TS Alliance
in honor of his twin nieces, Abby and
Amelia. Please support his incredible
effort with a donation by clicking on the
event listing on the TS Alliance event
calendar or follow along with his success
on his blog at www.willrunlonger.com.
September 13, 2014: Join the TS
Alliance of Indiana for their annual TSC
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801 Roeder Road, Suite 750
Silver Spring, MD 20910

PDF File - Tuberous Sclerosis Alliance

Transcription

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