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A MAGAZINE FROM THE TUBEROUS SCLEROSIS ALLIANCE
WINTER 2016 | VOLUME 138
Taking Life
One Jog, One
Mile and One
Day at a Time
Cover Story
PAGE 6
A Call To Action: Don’t
Miss These Important
Research Opportunities
PAGE 13
TSC CLINICS UP
CLOSE:Tuberous
Sclerosis Center of
Excellence at Le
Bonheur Children’s
Hospital, Memphis, TN
PAGE 18
Comedy for a Cure
Celebrates 15 Years
PAGE 23
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
WINTER 2016 • VOLUME 138
Kari Luther Rosbeck
President and Chief Executive Officer
Message from the Leadership
Jaye D. Isham
Vice President, Communications Strategy
Managing Editor
If you have opinions, questions or articles for
Perspective, we would like to hear from you.
Please contact the managing editor to obtain a
submissions form and guidelines.
Perspective is intended to provide basic information about tuberous sclerosis complex. It is not
intended to, nor does it, constitute medical or
other advice. The Tuberous Sclerosis Alliance (TS
Alliance) does not promote or recommend any
treatment, therapy, institution or health care plan.
Readers are warned not to take any action without
first consulting a physician. Commentary expressed
herein reflects the personal opinions of the author
and does not necessarily reflect the official views
of the TS Alliance. Information contained in the TS
Alliance database is confidential and not provided
nor sold to third parties.
Kari Luther Rosbeck
President & CEO
David Fitzmaurice Chair, TS Alliance Board of Directors
A
s 2016 begins, the Tuberous Sclerosis Alliance (TS Alliance) continues
to be thankful for the incredible power of community that exists between
everyone affected by tuberous sclerosis complex (TSC) – parents, adults
with TSC, siblings, volunteers, board members, corporate partners, clinicians and
researchers. The TSC community is truly responsible for the advances we’ve made
in treatments, research, support options and funding. So we start this message by
saluting all of you for your dedication to our mission to find a cure for TSC while
improving the lives of those affected.
One great example is the TS Alliance’s annual March on Capitol Hill, when
hundreds of supporters either come to DC to meet with their members of Congress
or meet with them in their home districts to discuss the critical importance of Federal
funding for TSC research. Over the years, these efforts have paved the way for
groundbreaking research and will ensure future clinical research moves forward in
a meaningful way. Everyone plays a role in this program’s success.
Perspective is published by the National Tuberous
Sclerosis Association, Inc. d/b/a Tuberous Sclerosis
Alliance, a 501(c)(3), charitable organization.
©Copyright 2016 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.
The TSC community is truly responsible for the
advances we’ve made in treatments, research,
support options and funding.
Board of Directors
David Fitzmaurice, Chair
Timothy Dills, Vice Chair
Beth Dean, Secretary
Darren Miles, Treasurer
Laura Lubbers, PhD, Immediate Past Chair
Rebecca Anhang Price, PhD
Martina Bebin, MD, MPA
John Bissler, MD
Michael Caggiano
Cassandra Carroll
April Cooper
Bonnie Hogue Duffy
Keith Hall
Jim Maginn
Brendan Manning, PhD
Ted Mastroianni
David Michaels
Debora Moritz
Matthew Simonian
Serving the community of adults with TSC has been a major focus at the TS
Alliance over the past decade. Indeed, ensuring smooth transition from childhood
to the teen years to adulthood continues to be a major challenge, and on page 15
you’ll be able to read about these efforts and what the future holds.
This issue’s cover story on page 6 features a newly diagnosed TSC adult and
mother, Lindsey Miller, who also has a child with TSC. Despite the challenges,
Lindsey decided to make a difference for everyone in the TSC community by using
her love of running to educate others about tuberous sclerosis complex and raise
funds while doing so.
Speaking of fundraising, there’s no doubt the TSC community has played a vital
role over the years in helping the TS Alliance raise significant funds through special
events. We are very pleased that on April 10, Comedy for a Cure will celebrate its
15th anniversary. This event grew over the years to become one of Hollywood’s
Endowment Fund Board of Directors
Doug Loftus, Chair
David Michaels, Secretary
Rita DiDomenico, Treasurer
James Achterhof
Mark Carroll
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Special Events
The TS Alliance is proud to announce
LIDS as the first national title sponsor of
the Step Forward to Cure TSC program.
LIDS has helped the TS Alliance raise $12.5
million over the years, serving as a corporate
partner for the Step Forward to Cure TSC
program. In addition, each year LIDS helps
TS Alliance of
Delaware/Lehigh Valley
Date: May 7, 2016
Location: Gring’s Mill,
Wyomissing, PA
Event Co-Chairs: Shelly Meitzler and
Bridget Simmons, momof2withtsc@
gmail.com or [email protected]
TS Alliance of Arizona
Date: April 23, 2016
Location: Eldorado Park,
Scottsdale, AZ
Event Chair: Debora Moritz,
[email protected]
TS Alliance of
Atlanta/North Georgia
Date: May 14, 2016
Location: Marietta Square, Marietta,
GA
Event Chair: Sharon Carpenter,
[email protected]
TS Alliance of Connecticut
Date: May 15, 2016
Location: Rotary Pavilion at Sand Hill/
Nevers Park, South Windsor, CT
Event Chair: Rebecca Thereault,
[email protected]
TS Alliance of the
Dallas/Ft. Worth Area
Date: May 14, 2016
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Be sure to register online to help
in fundraising, tracking your team and
enjoy more prizes and chances to earn
“footprints.” As you earn more footprints,
you can select even more prizes! We
urge you to become one of the Heroes
of the TS Alliance.
Step Forward to
Cure TSC® Also
Nationally Sponsored By:
Event Chair: Pat Schmutte,
[email protected]
Location: Frisco Commons Park,
Frisco, TX
Event Chair: Joy Graydon,
[email protected]
TS Alliance of Greater Alabama
Location: Emmet O’Neal Library,
Mountain Brook, AL
Event Chair: Margaret Cox.
[email protected]
A
provide 10,000-plus walk
shirts for more than 30 walkathon
locations across the country as well as
incentive items for walk participants.
We are honored to salute LIDS for its
outstanding patronage over the years.
Go to www.StepForwardtoCureTSC.org
to register for a walk in your community.
Check back often for updated dates
and locations. For 2016, the theme for
the walks is Super Heroes. Put on your
cape, mask, dress like
your hero be it a comic
book character, parent,
doctor, teacher or come
as you are, but come join
us as we celebrate the all
heroes among us!
TS Alliance of Metro DC
LIDS Step Forward to Cure TSC
National Walk on the Mall
Date: May 15, 2016
Location: National Sylvan Theater,
Washington Memorial Driveway, SW,
Washington, DC
Event Chair: Brooke Carpenter,
[email protected]
TS Alliance of Michigan
Date: June 11, 2016
Location: Granger Meadows Park,
Lansing, MI
Event Chair: Treasa Bolger Dunlap,
[email protected]
TS Alliance of the Delta Region
Location: Parc Hardy Park, Breaux
Bridge, LA
Event Chair: Katie Christensen,
[email protected]
TS Alliance of Greater Chicago
Date: June 4, 2016
Location: Libertyville High School,
Libertyville, IL
Event Chair: Geri Greenberg,
[email protected]
TS Alliance of New York
and New Jersey
Date: May 1, 2016
Location: Onondaga Lake Park,
Liverpool, NY
Event Chair: Bridgett Langstaff,
[email protected]
TS Alliance of Indiana
Date: May 21, 2016
Location: Billericay Park, Fishers, IN
TS Alliance of the
Pacific Northwest
Date: June 25, 2016
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Special Events
Location: Warren G. Magnuson,
Shelter #2, Seattle, WA
Event Co-Chairs: Devon
McCollum and Gloria Triebenbach,
[email protected] or
[email protected]
TS Alliance of Wisconsin
Date: May 14, 2016
Location: Regner Park,
West Bend, WI
Event Chair: Kris Degueme,
[email protected]
TS Alliance of Rocky
Mountain Region
Date: May 15, 2016
Location: Central Park, Denver, CO
Event Chair: Alison Brainard,
[email protected]
TS Alliance of the
Upper Midwest
Date: June 6, 2016
Location: Central Park Lexington
East, Roseville, MN
Event Co-Chairs: Maria Gibbons and
Judy Prudhomme, jody_prudhomme@
yahoo.com or [email protected]
TS Alliance of Southern California
Date: May 21, 2016
Location: El Dorado Park – East,
Long Beach, CA
Event Co-Chairs: Barb O’Neil and
Dawn Redfield, [email protected] or
[email protected]
The LIDS Step Forward to Cure
TSC Circle of Champions program
recognizes each individual raising
$10,000 or more at one of the walks
reason why I decided to host a Gala
is because Chris and I both love a
good party!”
The 9 th Annual H eather Joy
Memorial TS Alliance/LAM Golf
Outing was held September 19, 2016.
On October 8, 2015, with the
generosity and support of family
and friends, Victoria Goodman from
New Jersey raised $31,000-plus for
Renée Brown
Cindy Chernow
Lori Day
Ron Heffron
Brandon Kocher
Debora Moritz
Mary Jane Mudd
Noor Panjwani
Lisa Sanders
Robert and Denise Spear
Circle of Champions
Other Special
Events
The TS Alliance is grateful to the
Buntrocks for spearheading this event
to raise awareness and funds for the
TS Alliance but most importantly, to
honor their sweet daughter, Heather
Joy Buntrock, who had both TSC and
LAM. Congratulations to everyone
who helped make this event such a
success by raising more than $14,000.
Proceeds were donated to The LAM
Foundation and the TS Alliance.
held nationwide. Each candidate
was entered in to a drawing for a big
screen TV. Congratulations to our
2015 Circle of Champions winner, Margaret Cox! Thank you to
everyone who qualified for this honor
and worked so tirelessly to make a
difference in the lives of those living
with TSC, including:
Upcoming Special
Events
Christine (l) and Victoria (r).
the TS Alliance during a TSC Gala
in honor of her cousin Christine at
at the Spring Lake Manor in Spring
Lake, NJ. Christine is 22 years old
and has been battling TSC for her
entire life. “My cousin Christine is
only 18 months younger than me,
so we grew up together. She’s has
taught me to enjoy and life life to the
fullest. I couldn’t imagine my childhood
or life today without her. There are
many ways to raise money and the
Sunday, March 6, 2016: Join Pam
and Rita Sztukowski as they host the 23rd
Annual Cookin’ Up a Cure, a Pampered
Chef auction to benefit the TS Alliance.
Registration begins at 12:00 pm at Knights
of Columbus, 732 Badger Ave., South
Milwaukee, WI 53172. Please RSVP to Pam
at 414-281-6383 or [email protected].
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2016 Regional TSC & LAM
Conference Series
T
he TS Alliance is proud to
announce our partnership with
The L AM Foundation for the
2016 Regional TSC & LAM Conference
Series. These free one-day conferences
will host the nation’s top experts in the
fields of tuberous sclerosis complex
(TSC) and lymphangioleiomyomatosis
(LAM). As an attendee, you will get
information on the latest treatment and
testing options, basic and translational
research updates, support options for
both TSC and LAM, upcoming clinical
trials and much more.
Conference Series Schedule
April 16: Vanderbilt University Medical
Center, Nashville, Tennessee
June 11: Swedish Medical Center,
Seattle, Washington
November 5: Cleveland Clinic,
Cleveland, Ohio
Sample Conference Agenda
8:30–9:30 am Check-In/Registration
9:30–10:45 am Welcome and Opening General Session: Research and Upcoming Clinical Trials
10:45–11 am Break
11 am–12 pm Track 1: TSC Pediatric: Seizure Types and Treatments
Track 2: TSC Adult: Epilepsy and Current Treatments
Track 3: LAM-Specific General Session
12–1 pm Lunch
1–1:45 pm Track 1: TSC Pediatric: ADHD and Behavioral Challenges
Track 2: TSC Transition Age: Transitioning Medical Care, Guardianship and Special Needs Trusts
Track 3: TSC Adult/LAM: Quality of Life
1:45–2 pm Break
2–3 pm Track 1: TSC Pediatric: Autism Spectrum Disorder and Therapeutic Options
Track 2: TSC Transition Age: Education, Employment and Housing
Track 3: TSC Adult/LAM: Kidneys and Angiomyolipomas
3–3:15 pm Break
3:15–4: pm General Session: Genetics in TSC and LAM
Registration
For more information and to register online, visit www.tsalliance.org/conferences today. There is no registration fee required.
The 2016 Regional TSC & LAM Conference series is supported by GW Pharmaceuticals, Lundbeck, Medtech, Novartis, Mallinckrodt,
MetLife, and GeneDX.
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Taking Life One Jog, One Mile
and One Day at a Time
COVER STORY
BY CHRISTEN BELL, COMMUNITY OUTREACH MANAGER
“M
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y life is so vanilla. Nothing
crazy has ever happened
to me.” This is how Lindsey
Miller, a newly diagnosed TSC adult and
TSC mom began recounting her story
with TSC. Lindsey discovered her own
diagnosis through her daughter, Ellie’s.
Their stor y, like many TSC stories,
begins without any prior knowledge of
tuberous sclerosis complex.
For Ellie, the red flags began at 18
weeks in utero when a choroid plexus cyst
was discovered during the anatomy scan.
Lindsey and her husband, Dave, were told
it is a common find in ultrasounds that
often resolve on their own, and a follow up
ultrasound was scheduled for 20 weeks.
At the 20-week appointment, sure
enough the choroid plexus cyst had
and Dave Miller. As a result, Lindsey’s
pregnancy was closely monitored with
diligent ultrasounds and echocardiograms
until meeting with a neonatologist in
preparation for Ellie’s birth.
When Ellie was born on July 26,
2014, the doctor’s found five cardio
rhabdomyomas, though her heart was
Clinic and Dr. Mary Silvia. She continues
to develop normally despite seizures that
began at four months.
“Ellie’s diagnosis left me feeling like I
had no control and no way to predict her
future,” Lindsey recalls.
Like so many in her shoes, Lindsey
was looking for a way to regain some
control. She found her therapy and platform
through running. In March 2015 Lindsey
began training for the Raleigh City of
Oaks Marathon while raising funds for
the TS Alliance.
“It gave me a platform to share my
family’s story while advocating for those
with TSC. I finally had something to work
toward that could potentially help Ellie
and others with TSC,” she continued.
But the big picture can be overwhelming.
resolved, but that was not what brought
the ultrasound technician, nurse, and physician into the room. They had discovered
masses in Ellie’s heart and it was the
first time the words “tuberous sclerosis
complex” entered the lives of Lindsey
functioning well, and several brain tubers.
Both Lindsey and Dave took genetic
blood tests for TSC with negative results,
despite the bumps on Lindsey’s nose that
caused her to wonder. Ellie’s care was
transferred to Wake Forest Baptist TSC
As Lindsey noted, “It is easy to become
overwhelmed thinking about the future
and wondering if the goals that were set
would be attainable.”
Lindsey’s goal was indeed attainable,
offering a helpful life lesson she hopes
P ER SP ECT I V E
Their story, like many
TSC stories, begins
without any prior
knowledge of tuberous
sclerosis complex.
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will prove true in her TSC
journey as well. After seven
months of training and fundraising,
her hard work paid off with a valiant
marathon finish and $11,060 raised and
donated to the TS Alliance.
All of this took place before Lindsey
received a TSC diagnosis. In preparation
for future family planning, Lindsey made
an appointment with a dermatologist
regarding the bumps on her nose, despite
the negative TSC results of her blood
test. A biopsy revealed they were in fact
angiofibromas. She was referred to the
Wake Forest Baptist TSC Clinic where
she saw Dr. Matthew Wong. He informed
her that he believed, based on her skin
symptoms and Ellie’s diagnosis, Lindsey’s
case could be considered a mosaicism.
A genetic mosaicism means that only
some of the cells in a person’s body have
a Doctor of Physical Therapy, and getting
married. Her story is exactly like all others
surrounding TSC: completely unique. She
is adjusting to her new normal, which now
includes knowledge and awareness of
TSC and proactive care for herself and
her daughter.
Through the TS Alliance, other TSC
families and new friendships with others
on difficult journeys, Lindsey can gladly
say, “I no longer feel so alone in this fight,
which it is a wonderful feeling!” Sharing
her story throughout the marathon process
was empowering and helpful for Lindsey’s
journey, and she hopes it will do the same
for those who hear it.
“By thinking about one jog, one mile,
one day at a time, the worry settles a
little,” Lindsey says. “I have found that
focusing on our small daily victories helps
me appreciate and find joy in each day.”
a mutation in TSC1 or TSC2. This can
happen when a random mutation occurs
in one cell of an embryo. As the embryo
grows, the cells in the embryo divide many
times, and all of the cells in the person’s
body that arise from the one embryonic cell
with the TSC1 or TSC2 mutation will also
have the same mutation, but the person’s
other cells will remain normal. Only 5-10
percent of individuals with TSC are thought
to have genetic mosaicism.
Lindsey’s further testing revealed a
relatively normal brain scan, nodules on her
lungs (that are not at this point indicative of
LAM), and a 6 cm angiomyolipoma on her
right kidney. To continue going against the
TSC grain, most angiomyolipomas over 5
cm are symptomatic, but Lindsey’s is not.
Reiterating the normalcy of her life,
Lindsey recounted growing up playing
sports, doing well in school, graduating as
Government Relations Update
Congress Approves $6
Million in New Research
Funds for Tuberous
Sclerosis Complex
On December 18, 2015, after months
of contentious debate that almost brought
Congress to the verge of a government
shutdown, the House and Senate approved
the final budget package for fiscal year
2016. This massive spending measure,
which funds all agencies of the federal
government, includes an appropriation
of $6 million for the Tuberous Sclerosis
Complex Research Program (TSCRP)
at the Department of Defense. The bill
was signed into law by the President on
December 18.
As in the past, this achievement would
not have been possible without the advocacy
efforts of our volunteers, family members,
and friends across the nation, beginning with
our March on Capitol Hill in March 2015.
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Thanks the dedication and perseverance
of advocates over the years, the TSCRP
has received from Congress an aggregate
appropriation of $65 million since fiscal
year 2002. This funding has resulted in
117 grants to date (through fiscal year
2014) to our research community, with
more to be awarded in the next few months.
TSC Advocates to
Participate in March on
Capitol Hill on March 2
Once again, our dedicated advocates will
be converging on Capitol Hill to participate
in the Tuberous Sclerosis Alliance’s annual
March on Capitol Hill, scheduled this year
for March 2. We hope to communicate
with every Member of Congress about
the importance of continuing funding for
the TSCRP. We are also pleased that our
champions in Congress – Representatives
Loretta Sanchez (D-CA) and Mike Fitzpatrick
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(R-PA) and Senators Johnny Isakson
(R-GA) and Chris Murphy (D-CT) – will
once again circulate “Dear Colleague”
letters expressing support for funding the
TSCRP in the fiscal year 2017 Defense
Appropriations Act.
During this Presidential election year,
Congress will be working to make as much
progress as possible on the fiscal year
2017 budget, before it recesses for the
summer in mid-July. As a result, this will
be a challenging year, and it will be more
important than ever for friends and families
to communicate with their Members of
Congress about the importance of TSCRP
research. Please join us by taking the
opportunity to meet with your Members
of Congress and their staff.
Find out more by visiting www.tsalliance.
org/actionteam.
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TSC Research Grants Update
T
he TS Alliance has invested more
than $18 million into research
since it was founded in 1974.
Funding of research grants has always
been—and remains—one of the major
priorities of the TS Alliance for multiple
reasons. The most obvious and immediate benefit of awarding research grants
is to enable scientists to carr y out
specific research projects that address
important, previously unknown scientific
questions to help us better understand
TSC and how we might treat or cure it.
However, there are also long-term
benefits to funding even small, short-term
research projects. One such benefit is
bringing new scientists into the TSC field.
The TS Alliance’s postdoctoral fellowship
program funds researchers who have recently
earned their PhD and/or MD degree and
who are still under the mentorship of a
senior researcher. The TS Alliance strives
to fund the postdoctoral training or early
career development of excellent scientists
by encouraging them to apply their energy
and ingenuity to problems related to TSC.
Many of these scientists will go on to
obtain tenured faculty positions at major
research universities and will continue
to focus their research on TSC for many
years to come.
Another benefit to funding small,
short-term research projects is to enable
researchers to produce data on which to
build an application for funding of a much
larger project from other funding sources,
especially the National Institutes of Health
(NIH) and the Department of Defense’s
Tuberous Sclerosis Complex Research
Program (TSCRP). The TS Alliance tracks
the amount of federal funding received by
investigators who received TS Alliance
grants in the past. This article describes
one example of how TS Alliance grant
funding has impacted the career of one
early investigator and illustrates that
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P ER SP ECT I V E
investigators funded by the TS Alliance
go on to obtain many millions of dollars in
research funding from the NIH and TSCRP.
Dr. Carmen Priolo
Carmen Priolo, MD, PhD, is a Junior
Faculty member in the Division of Pulmonary
and Critical Care Medicine at Brigham and
Women’s Hospital and Harvard Medical
School, Boston. In 2013, she received a
$132,000 two-year TS Alliance grant to
conduct research on the identification of lipid
metabolism abnormalities in TSC-deficient
cells that could represent therapeutic targets
and/or biomarkers of total-body disease
burden in TSC and LAM. This research
support, together with a DOD TSCRP grant
awarded to Dr. Priolo in the same year,
was critical to conduct proof-of-concept
studies suggesting a potential application
of metabolic imaging for measuring disease
progression and response to therapy in
TSC and LAM. Dr. Priolo has been leading a collaborative effort with colleagues
at the Massachusetts General Hospital
(Boston) to test methodologies that allow
whole-body tracing of lipid metabolism in
various models of TSC and LAM.
In December 2015, Dr. Priolo was
awarded as Principal Investigator a 5-year
NIH grant from the National Heart, Lung,
and Blood Institute that focuses on the
identification and targeting of mechanisms
underlying dysregulation of lipid metabolism
in LAM pathogenesis. Preliminary data
generated through support from the TS
Alliance were critical to this NIH application,
which allows Dr. Priolo to establish her
own laboratory and independent research
program on novel therapeutic and diagnostic
applications in TSC and LAM.
is well suited for a small, focused project.
But for major discoveries and advances,
longer-term funding is necessary to ensure
that lab personnel can be hired and committed to see a larger project through to
completion. Additionally, breakthroughs
often require collaboration, and sizable
budgets are required to support research
at multiple locations, particularly for clinical
research on a rare disorder such as TSC.
Fortunately, TS Alliance grants are
sized appropriately to enable researchers to
generate key data that help their NIH and
TSCRP grant applications be successful.
After receiving their first grant from the
TS Alliance, researchers funded by the TS
Alliance since 1984 have obtained $259
million in research grant funding from the
NIH and more than $11 million from the
Department of Defense’s TSCRP (see
graph below). This demonstrates that,
like Dr. Priolo, investigators supported
by the TS Alliance are highly productive
and are able to turn their findings into
the basis of larger research projects. The
TSC community can be encouraged and
proud that research funding is producing
not only new knowledge and ideas for
better treatments but is also cultivating a
group of successful researchers to enable
even more impact and advancements in
the future.
TS Alliance
$18,847,941
TSCRP
$11,765,044
NIH
$259,264,329
TS Alliance Funding Leads
to NIH and TSCRP Funding
As with Dr. Priolo, the amount of
funding provided by a TS Alliance grant
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Working to Ensure Good Educational
Outcomes for Students with TSC:
Introducing the TS Alliance Educator Mentor Program
A
re you a parent of a student
with tuberous sclerosis complex
(TSC) or a young adult with TSC
in higher education struggling with your
school system in understanding the
complexities of TSC? Your fist step is
to share the following publications with
educators:
• Teacher’s Guide: Educating a Child
with TSC
• Behavioral Issues and TSC
• What College Professors Need to
Know About TSC
These publications can be downloaded
free from our website, www.tsalliance.
org, under the “For School Issues” tab.
However, sometimes a school system may need more support than just
reading about TSC. Truly understanding
the complexities of TSC can often be
overwhelming to educators. The TS
Alliance Educator Mentor Program
(EMP) was developed for this purpose.
The EMP was designed to help ensure
good educational outcomes for students
with TSC. The program is designed to
suppor t school systems in all areas
of education from learning issues to
behaviors for students with TSC, from
early childhood through college.
Our Educator Mentors are parents of
children with TSC, individuals with TSC,
and other individuals with education
experience such as administrators, teachers
K-12, school nurses, school psychologists, speech therapists, occupational
therapists, physical therapists, Applied
Behavioral Analysis instructors, college
professors, intervention specialists, and
behavior specialists. These volunteers
are willing to work one-on-one with
school system personnel to share their
knowledge and expertise about TSC
either by phone or email.
Accessing the EMP
Program
Provide your school system with the
description above of the EMP and the
following contact information: Dena Hook,
TS Alliance Vice President of Outreach,
1-800-225-6872.
Once the TS Alliance receives a request
for support from school personnel, Dena
will call the school contact to determine
the specific area of need. Then she will
assign the appropriate Educator Mentor.
In 2015 more than 89 school systems
accessed the resources of the TS Alliance
Educator Mentor Program.
Want to Help?
The TS Alliance is looking for more
Educator Mentors. If you are or know of
someone you think would be a good fit
to the Educator Mentor Program please
contact Dena Hook at 1-800-225-6872
or [email protected]
Message From Leadership continued
premier nights of laughter, while raising
more than $4 million over the years. It truly
is an amazing feat, and we are so proud
of every volunteer, celebrity and comedian
who’s helped make it so successful and
inspiring.
This time of year also means volunteers
from around the country will begin planning and executing the 2016 LIDS Step
Forward to Cure TSC walkathons. While
these walks raise much-needed funds,
they also offer the unique opportunity for
TSC community members to interact with
each other, particularly those who may
A
M a g a z i n e
f r o m
t h e
Tu b e r o u s
be unable to attend Community Alliance
meetings or Regional TSC Conferences.
Visit www.StepForwardtoCureTSC.org
today to find a walk near you.
One other important partnership is
the TSC community’s relationship with
our TSC Clinics. One example is the
Minnesota Epilepsy Group’s “Clinic with
Walls,” which has been on the forefront of
hosting educational meetings, supporting
research efforts and providing excellent
care to their TSC patients and families.
On page 18, you can read about another
outstanding clinic, the Tuberous Sclerosis
S c l e r o s i s
A l l i a n c e
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20 1 6
•
Center of Excellence at Le Bonheur
Children’s Hospital in Memphis.
Finally, the TS Alliance Board of Directors
relies heavily on the community not only
for board members, but also for direction
and input. You can read about the new
board members on page 16, and we’d like
to gratefully acknowledge the service of
outgoing board members, including Rita
DiDomenico, Steven Goldstein, Courtney
O’Malley, David Parkes, Henry Shapiro
and Dr. Elizabeth Thiele. We also salute
Mike Augustine, who served as Chair of
the TS Alliance Endowment Fund Board.
9
Honorariums (June 2015 – October 2015)
You can honor a friend or family member for an important occasion with a gift to the TS Alliance. It is a wonderful way to send
a birthday or anniversary wish, or congratulations for retirement, a job well done, graduation, etc. Please include the name and
address of the individual being honored so that acknowledgement of your kind donation can be sent. 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, contactl Tye Hoffman at (240) 638 4643 or [email protected].
Tribute(s) for Tyler Abbott
Dr. Marc H. Plavin and Ms. Toni Reiss
Tribute(s) for Andrew N. Adams
Mr. and Mrs. James E. Adams
Tribute(s) for Kristen A. Aller
Mr. Gordon L. Felger
Tribute(s) for Bladen D. Arndt
Ms. Linda Meints
Tribute(s) for Megan
Augustine
Ms. Magdalena Lutsky
Tribute(s) for Jacob Baker
Mr. and Mrs. Michael Baker
Tribute(s) for Xavier
Barr-Malec
Mr. and Mrs. Robert E. Newlin
Tribute(s) for Tyler Beaty
Mrs. Tracy Beaty
Tribute(s) for Joshua P. Beck
Ms. Karen White
Tribute(s) for Gavin Berg
Mr. and Mrs. Jerome N. Hesse
Tribute(s) for Rebecca L.
Berger
Dr. Patrice M. Becker
Tribute(s) for Matthew Beyer
Mr. Kevin Beyer
Ms. Lisa A. Beyer
Tribute(s) for Gary Bindler
Ms. Ellen Tarpey
Tribute(s) for Ian Blackard
Mr. and Mrs. Charles Pletke
Tribute(s) for Jacob Blood
Mr. and Mrs. William S. Blood, Sr.
Dr. Carla M. Krebs
Tribute(s) for Kristen A.
Bloomfield
Mr. and Mrs. Robert M. Jackson
Tribute(s) for Ryan Brabender
Ms. Phyllis T. Brabender
Tribute(s) for Mae Bracy
Mr. and Mrs. Richard O. Thomas
Tribute(s) for Lance Bradford
Mr. and Mrs. Larry E. Bradford
Mr. and Mrs. Al King
Tribute(s) for Tyler Brainard
Mr. and Mrs. Michael Belletire
Tribute(s) for Rashanna
Branch
Ms. Carole L. Battle
Tribute(s) for Louise Breier
Mr. and Mrs. Jason S. Clarke
Tribute(s) for Nara K. Brenden
Ms. Virginia Trygstad
Tribute(s) for Anthony Brewer
Mr. Brendan Furlong
Tribute(s) for Megan Bright
Mr. and Mrs. Thomas Ritter
Tribute(s) for Molly Britt
Mr. Joseph Walsh
Tribute(s) for Derrick Brown
Joseph M. Levine Foundation
10
Tribute(s) for James B. Brown
Ms. May E. Chambers
Tribute(s) for Pascal Bruehler
Mr. and Mrs. Charles Bealer
Mr. and Mrs. Timothy P. Silber
Tribute(s) for Daniel L.
Buchsbaum
Mr. and Ms. Andrew Buchsbaum
Mr. Joseph W. Ostrow
Tribute(s) for Kelsi J. Buren
Mrs. Jacquelyn Britt
Tribute(s) for Jackson Burton
Mr. and Mrs. Mark S. Maiberger
Tribute(s) for Emile T. Busel
Mr. and Mrs. Harvey J. Busel
Tribute(s) for Yvonne L.
Caldwell
Mr. and Mrs. Gary L. Caldwell
Tribute(s) for Matty Campbell
Mrs. Linda Greene
Mr. and Mrs. John J. Murphy
Tribute(s) for Brennan Carroll
Mr. and Mrs. Bryce Carroll
Ms. Marie Gotauco
Ms. Marlies Hensel
Tribute(s) for Justus Chernow
Mr. Steven A. Lipman
Tribute(s) for Elizabeth A.
Christensen
Ms. Kim R. Armstrong and Ms. Joyce
C. Armstrong
Tribute(s) for George C.
Christensen
Ms. Kim R. Armstrong and Ms. Joyce
C. Armstrong
Tribute(s) for Curtis J.
Christle
Mr. and Mrs. Wayne Luzier
Tribute(s) for Brooks
Clarkson
Mr. Sean Clarkson
Tribute(s) for Joshua Clemons
Ms. Diane Clemons
Tribute(s) for Liam M. Coady
Mr. and Mrs. Thomas J. Coady
Tribute(s) for Kama A. Coates
Alpine Surgical, LLC
Ms. Karen A. Fitzgerald
Tribute(s) for Adrianne Cohen
Charles and Ann Quilter Charitable
Trust
Tribute(s) for Elliot C. Cohen
Ms. Suzanne Hochberg
Mrs. Joyce Morse
Tribute(s) for Kyle Cole
Mr. Mike Smith and Mrs. Patricia
Hagins
Tribute(s) for James M.
Coleman
Mr. and Mrs. Redford Coleman
Tribute(s) for Mary Z. Conner
Mr. and Mrs. William D. Conner
P ER SP ECT I V E
Tribute(s) for Michael D. Cox
Mr. and Mrs. Mell Duggan Jr.
Tribute(s) for Tommy Cox
Mr. and Mrs. Charles L. Anderson
Tribute(s) for Keenan J.
Creamer
Terry McMullen
Dolores Mead
Mr. and Mrs. Walter Smith
Mr. Michael Tyo
Tribute(s) for Kyle
Cunningham
Ms. Sheila J. Nelson
Tribute(s) for Charlotte
D’Amario
Mrs. Julia Bell
Mr. and Mrs. Peter L. Filosi
Tribute(s) for Nathan M.
Darney
Mr. and Mrs. Steve Gondol
Tribute(s) for Anna Jayne
Davis
Mr. and Mrs. William Tarachas
Tribute(s) for Kaylee A. Davis
Ms. Kathryn P. Wolf
Tribute(s) for Olivia Elizabeth
W. Day
Mr. Michael Hogan
Mrs. Jennifer Santos
Tribute(s) for Cole
Denharder
Mr. and Mrs. Cornelius Denharder
Tribute(s) for Jacob E.
Dickison
Mr. and Mrs. John G. Torkelson
Tribute(s) for Steven M. Dills
Mr. and Mrs. Michael Gutto
Tribute(s) for Bart Dollard
Mrs. Lil Conley
Tribute(s) for Alexandra
Donato
Mr. and Mrs. Martin J. Koppenhafer
Tribute(s) for Mary A. Doran
Mr. and Mrs. H. Joel Schatz
Tribute(s) for Danielle Duprez
Mr. and Mrs. Conrad Duprez
Tribute(s) for Michael Ferrara
Mr. and Mrs. Robert L. Ferrara
Tribute(s) for Ben Ficklen
Mr. Michael Murphy
Tribute(s) for Preston
Fitzgerald
Mr. and Mrs. Michael Wagner
Tribute(s) for John W.
Fitzmaurice
Mr. John Malone
US Bank Foundation Employee
Matching Gift Program
Tribute(s) for Matthew Fox
Mr. and Mrs. Mark Fox
Tribute(s) for Hudson Garcia
Mr. and Mrs. Eugene Jacks
•
W I NTE R
Tribute(s) for Meagan Golden
Mr. Kevin Regan
Tribute(s) for Heather
Gonzalez
Mr. and Mrs. John K. Mielke
Tribute(s) for Sophia Gonzalez
Mr. Terry H. Willows
Tribute(s) for Ann Gowdey
Dr. and Mrs. Mark Goodman
Tribute(s) for Bruce Gowdey
Dr. and Mrs. Mark Goodman
Tribute(s) for Geri Greenberg
Mrs. Amy Zussman
Tribute(s) for Michael
Greenberg
Mrs. Amy Zussman
Tribute(s) for Lera C.
Gremillion
Mrs. Alice G. Fleetwood
Tribute(s) for Mary Hable
Mr. and Mrs. Anthony Hable
Tribute(s) for Diane
Hadesman
Anonymous
Mr. and Mrs. Jeffrey Goldman
Tribute(s) for Joyce Hafron
Anonymous
Tribute(s) for Norman Hafron
Anonymous
Tribute(s) for Thomas
Hammerquist
Mr. Charles B. Whiteside
Tribute(s) for Alicia Hardie
Dr. and Mrs. Daniel D. Hardie
Tribute(s) for Cora Harper
Mr. James Luecke
Tribute(s) for Teddy
Hatgimios
Michener 1, LLC
Tribute(s) for Bao Heffron
Ms. Chandra Morse
Tribute(s) for Hannah Henke
Mr. and Mrs. William H. Besancenez
Mr. and Mrs. Steven P. Bowlds
Mr. and Mrs. Joseph Crudden
Ms. Alison Foxman
Mr. and Mrs. Jerry Kemp
Mr. and Mrs. Kenneth Miller
Mr. and Mrs. Michael O’Boyle
Mr. Gary Siegel
Tribute(s) for Mathew Hillier
Mr. and Ms. William Gates
Mr. and Mrs. Lewis F. Lipkin
Mr. and Mrs. Anthony J. Russo
Ms. Kathleen A. Wickett
Ms. Patricia Zak-Kearon
Tribute(s) for Christy Hobart
Ms. Betsy Kramer
Tribute(s) for Graham Hobbs
Anderson Orthodontics, PLLC
Mr. and Mrs. Andrew M. Graham
Mr. and Mrs. Kevin J. Marchetti
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M a g a z i n e
Tribute(s) for Amy Hodel
Mr. and Mrs. Dayne W. Stiles
Mr. and Mrs. Dennis Stiles
Tribute(s) for Elise Hoersch
Mr. and Mrs. Jeffrey S. Hoersch
Tribute(s) for Robert M.
Hoffmann
Mr. and Mrs. Jeffrey M. Hoffmann
Tribute(s) for Dawn D.
Holmquist
Mr. and Mrs. Gene Holmquist
Tribute(s) for Ty Hurst
Mr. and Mrs. Dwight O. Moberly
Mrs. Sharon Nicely
Tribute(s) for Ben
Hutchinson
Mr. and Mrs. Michael J. McGowan
Mr. and Mrs. Christopher J. Moca
Mr. Michael S. Richards and Ms.
Priscilla Richards
Tribute(s) for Kevin Jackson
Mr. and Mrs. Max Toberoff
Tribute(s) for Ariana James
Mr. James Rinehart and Ms. Susan
Goode
Tribute(s) for Carl E. Jensen
Mr. and Mrs. Tim Guest
Mr. and Mrs. James R. Keller
Northshore Learning Alliance
Tribute(s) for Avery Jodoin
Mrs. Jill C. Benner
Tribute(s) for Annie Johnson
Mr. and Mrs. David S. Alden
Ms. Lois Alvis
Mr. and Mrs. Philip M. Anders
Anonymous
Mr. and Mrs. William E. Braunlich
Mr. and Mrs. Ray Burns
Ms. Ellen C. French
Mr. and Mrs. James W. Gilley
Mrs. Fay Godman
Mr. and Mrs. Robert Graham
Mr. Ralph Hillman
Mr. and Mrs. Walter Hoban
Mr. and Mrs. Henry J. Hribar, Jr.
Mr. and Mrs. Ken Johnson
Mr. and Mrs. Lawrence C. Johnson
Ms. Sarah K. Jones
Mr. and Mrs. Gary J. Katz
Mr. and Mrs. Stanley G. Miller
Ms. Marilyn Modjeski
Ms. Martha S. Reese
Mr. and Mrs. John F. Spittler
Mr. and Mrs. Perry C. Vascellaro
Mr. and Mrs. Ron K. Vickrey
Mr. and Mrs. W.N. Young
Tribute(s) for Ken Johnson
Mr. and Mrs. Stanley G. Miller
Mr. and Mrs. James J. O’Halloran
Tribute(s) for Shonnie
Johnson
Mr. and Mrs. James J. O’Halloran
fr o m
th e
Tu be ro us
Tribute(s) for Michael Jorski
Mr. and Mrs. Allan C. Nomura
Tribute(s) for Hayden A. Joyce
Mr. and Mrs. William F. Joyce
Tribute(s) for Janice Kennedy
Mr. and Mrs. Raymond J. Little
Tribute(s) for Kevin W.
Keseloff
Ms. Janice Hunter
Tribute(s) for Kendall Kesig
Mr. and Mrs. Tomasean Swisher
Tribute(s) for Laura Knapp
Mr. Chistopher Knapp
Tribute(s) for Georgia Kness
Ms. Ruth W. Aubey
Tribute(s) for Lee Kness
Ms. Ruth W. Aubey
Tribute(s) for Michael E.
Kohrman
Ms. Patti Ogden, FNP-BC
Tribute(s) for Jackson
Kozisek
Mr. and Mrs. Barry L. Allen
Mr. and Mrs. Joan Gohn
Tribute(s) for Sarah Krecklow
Mr. and Mrs. David R. Krecklow
Tribute(s) for Cathy J. Krinsky
Mr. and Mrs. P. Allen Krause
Mr. and Mrs. Edwin S. Mathews
Tribute(s) for David A. Krinsky
Mr. and Mrs. P. Allen Krause
Tribute(s) for Lauren E.
Krinsky
Ms. Eva Monastersky
Tribute(s) for Melissa Kulik
Dr. and Mrs. Alexander Kulik
Tribute(s) for Brianna LaVoun
Ms. Kathryn M. Chand
Mr. and Mrs. Howard Haugen
Ms. Marie Radigan
Tribute(s) for Alison Lawless
Ms. Kathleen Djenfer
Tribute(s) for Catherine
Lawless
Ms. Kathleen Djenfer
Tribute(s) for Taylor Ledford
Mr. and Mrs. John McFadden
Tribute(s) for Janet Lembke
Ms. Janet Lembke
Tribute(s) for Nolan Lenz
Mr. and Mrs. Rodney Lenz
Tribute(s) for Kellen Leuthold
Mrs. Jane Bergstrom
Ms. Estelle Leuthold
Tribute(s) for Todd Levine
Mr. and Mrs. Kenneth S. Jaffe
Tribute(s) for Gregory Lewis
Paper Products Company, Inc.
Tribute(s) for Josephine
Liddle
Ms. Susan Jones
Mr. Robert Wyckham
S c l e ro s i s
Alliance
Tribute(s) for Tommy R. Lindsey
Mr. and Mrs. Frank Baldassare Jr.
Mr. and Mrs. Jeff Struthers
Tribute(s) for Hannah Linsin
Mr. and Mrs. Howard Z. Blum
Mr. Richard C. Cooper and Ms.
Barbara Sheridan
Ms. Sheila Olshansky
Mr. Donald W. Schaumberger
The David Pattis Memorial Foundation
Tribute(s) for Alyssa C. Loftus
Mr. and Mrs. Steve Fleissner
Tribute(s) for Ellyn A. Lubbers
Mr. and Mrs. Daniel J. Diephouse
Mrs. Sharon C. Van Essendelft
Tribute(s) for Martin E. Lush
Mr. and Mrs. Jeffrey E. Needleman
Tribute(s) for Haley N. Lynch
Mrs. Barbara Short
Tribute(s) for Nicholas F. Lyons
Mr. and Mrs. Alfred Garzino Jr.
Dr. Steven Scholl
Tribute(s) for Jacqueline
MacVicar
Mr. and Mrs. Terry Carroll
Tribute(s) for Ashley Marchese
Mr. and Mrs. Emmett Perkins
Tribute(s) for Morgan Marlow
Mr. John M. Baccus and Ms. Kathryn
Marlow
Mr. Mark Marlow
Tribute(s) for Halle Marshall
Dr. Susan Wolver
Tribute(s) for Jacob Marsiglia
Mr. and Mrs. Dennis Sullivan
Tribute(s) for Gia Mason
Footwerx
Tribute(s) for Matthew
Mastbaum
Dr. and Mrs. Frederick R. Gross
Tribute(s) for Genie Matthews
Mrs. Julia D. Webb
Tribute(s) for J. Payson
Matthews
Mrs. Amy Winfrey
Tribute(s) for Megan Mauro
Mr. and Mrs. Steve Mauro
Tribute(s) for Sophia
Mayrsohn
Mr. and Mrs. David I. Hoffman
Mr. and Mrs. Jerry N. Koral
Mr. and Mrs. Alan Marcus
Mr. and Mrs. Mark Mayrsohn
Tribute(s) for Jenny McBride
Mr. and Mrs. Ricky Wiggins
McCulley
Ms. Shannon M. Catt
Tribute(s) for Ashlin
McFadden
Mr. and Mrs. Charles McFadden
Tribute(s) for Nathan A.
Mehrer
Mr. and Mrs. Joe U. Carrillo
Tribute(s) for Connor Meitzler
Mr. and Mrs. Robert Connor
Tribute(s) for Joshua Michael
Mrs. Carol Michael
Tribute(s) for Harrison R.
Miles
Mr. and Mrs. Michael Hernandez
Tribute(s) for Rylee Mischel
Mr. Robert W. Mischel
A
M a g a z i n e
f r o m
Tribute(s) for Nadra
Mlynarczyk
Dr. and Mrs. Gregory W. Baird
Mr. and Mrs. Richard D. Olson
Mr. and Mrs. Jess Patrick
Mr. and Mrs. Clayton E. Spence
Tribute(s) for Lindsay Moody
Ms. Lise McLean
Tribute(s) for Olivia A. Moore
Mr. and Mrs. Clark Moore
Tribute(s) for Evan Moss
Mr. Daniel R. Waxlax
Tribute(s) for Mackenzie
J. Mudd
Mr. and Mrs. Paul Smith
Tribute(s) for Lauren
Niemeyer
Mr. and Mrs. Michael and Kris
Niemeyer
Tribute(s) for Leslie D.
Nickerson
Mr. Lee Basna
Tribute(s) for Parker Northrup
Mr. and Mrs. Howard Mullis
Ms. Margaret Northrup
Tribute(s) for Kristin Nowak
Mr. and Mrs. Harold Nowak
Tribute(s) for Sandra O’Brien
Mr. and Mrs. James Haskins
Tribute(s) for Matt Olear
Mrs. Theresa Hemp-Hall
Tribute(s) for Stella OLear
Ms. Linda K. Ham
Tribute(s) for James E. Oliver
Mr. and Mrs. Bernard Wendt
Tribute(s) for Rene’ Olivio
Mrs. Consuelo C. Roche
Tribute(s) for Stephanie Otani
Mrs. Kiyoko Maruyama
Mr. and Mrs. Steve T. Luong
Tribute(s) for Eric Parkes
Mr. and Mrs. Gerald Friedman
Mr. and Mrs. Robert Rawdin
Tribute(s) for Patricia J.
Parsons
Ms. Sharrie Hurka
Tribute(s) for Muriel Pattis
Mr. Earl Abramson and Ms. Sheila
Schlaggar
Herbst Foundation
Tribute(s) for Gabriel Phillips
Mr. and Mrs. Mark Phillips
Tribute(s) for Sophie Phillips
Ms. Katherine Phillips
Tribute(s) for Edgerrin
Piechocki
Mr. and Mrs. Donald Berg
Tribute(s) for Gwennyth
Piechocki
Mr. and Mrs. Donald Berg
Tribute(s) for William Joseph
Piezzo
Mrs. Roberta Piezzo
Tribute(s) for Carole C. Pitard
Mr. and Mrs. James H. Cook
Ms. Joan W. Perkins
Tribute(s) for Allison Plavin
Tribute(s) for Cynthia Pompeo
Ms. Helen M. Gorman
Barbara G. Harris
Tribute(s) for Ronny Pompeo
Ms. Helen M. Gorman
t h e
Tu b e r o u s
Barbara G. Harris
Mr. and Mrs. Ronald Pompeo
Tribute(s) for Jack Poutasse
Mr. and Mrs. Steven A. Lerman
Tribute(s) for Cameron T.
Powell
Mr. Robert S. Webb
Tribute(s) for Elijah M. Price
Dr. and Mrs. Alan Kushner
Mr. and Mrs. Joel S. Rothman
Dr. Joseph Schmidt
Tribute(s) for Rebekah M.
Price
Mr. and Mrs. Robert R. Price
Tribute(s) for Sarah M. Price
Mr. and Mrs. Robert R. Price
Tribute(s) for Heri Negvon
Quintana
Mrs. Ana Weber
Tribute(s) for Sarah Quintana
Ms. Shirley L. Stafford
Tribute(s) for Tony Rasavage
Mr. and Mrs. Mark Rasavage
Tribute(s) for Cameron
Rawlings
Mr. and Mrs. Albert F. Fuchs
Tribute(s) for Veronica
Reiner
Mr. Gary Reiner
Tribute(s) for Faith Rentar
Mr. Mark Koscielak
Tribute(s) for Derek T.
Richards
Mr. Chase Hirt
Tribute(s) for Jordan
Richards
Mr. and Mrs. John A. Boyer
Tribute(s) for Christine Richie
Anonymous
Tribute(s) for Caden L.
Richmond
Mr. Jeffrey Thereault
Tribute(s) for Will Richter
Mrs. Kathleen Long
Tribute(s) for Colleen Rivers
Mr. and Mrs. Charles Rivers
Mr. and Mrs. John A. Virgilio
Tribute(s) for Kristine Ross
Mr. and Mrs. Anthony Ross
Tribute(s) for Sidney Rouse
Mr. Sydney D. Christopher
Mr. and Mrs. Ron Smith
Tribute(s) for Chris Russell
Mr. and Mrs. John R. Carlson
Tribute(s) for Kaitlyn R.
Sabedra
Mr. James Ramsey
Mr. John H. Sabedra
Tribute(s) for Leielle Saddik
Mr. and Mrs. Mel Chaifetz
Tribute(s) for William V.
Sadoski
Ms. Raenette M. Kramer and Ms.
Leticia A. Posk
Tribute(s) for Ella M. Sanders
Ms. Mildred M. Sanders
Tribute(s) for Jessica L.
Sanders
Mr. and Mrs. Ronnie Marshall
Mr. and Mrs. John R. Starling
Tribute(s) for Ryder Schalich
Mr. and Mrs. Bill Schalich
Schalich Construction
S c l e r o s i s
A l l i a n c e
•
Tribute(s) for Meredith
Schlandt
Mr. Tyler Schlandt
Tribute(s) for Carter Schmidt
Ms. Patti Fox
Tribute(s) for Stephen F.
Schmitt
Mr. and Mrs. Jack M. Olson
Tribute(s) for Brenna L. Scott
Mr. and Mrs. Douglas Scott
Tribute(s) for Kevin Scott
Mr. and Mrs. Craig Scott
Tribute(s) for Kylie
Seggerman
Mr. and Mrs. Bob Glick
Tribute(s) for Zoey Seiling
Ms. Jessica Hart
Tribute(s) for Erika Seward
Dr. Harold Seward
Tribute(s) for Benjamin
Shapiro
Mr. and Mrs. Norman Berezowsky
Mrs. Carol D. Hobart
Ms. Betsy Kramer
Mr. John Pietrolungo
Tribute(s) for Henry P.
Shapiro
Ms. Betsy Kramer
Tribute(s) for Emmory R.
Shapses
Mr. and Mrs. Steven Silver
Tribute(s) for Ann C.
Sherwood
Ms. Margaret Dolan
Tribute(s) for Erin Sill
Mr. Gerald Sill
Tribute(s) for Joshua B. Sims
Ms. J Michelle Funk
Tribute(s) for Margaret M.
Sintek
Mr. and Mrs. Roger C. Lansman
Tribute(s) for Meghan J.
Sirinek
Mr. Thomas J. Krieg
Tribute(s) for Charlotte
Skillin
Mrs. Anne L. Skillin
Tribute(s) for Drew Sklarin
Mr. Todd Arky
Mr. and Mrs. Gerald Brace
Mrs. Joan Buyce
Mr. Carlos Camacho
Mr. and Mrs. Gregg P. Cockrell
Ms. Julie E. Cohen
Ms. Lara Cohen
Mr. Anthony Cuccurullo
Mr. and Mrs. Larry Donsky
East Brunswick Jewish Center
Mr. and Mrs. William Gale
Mr. Larry Gelfand
Mr. Randi Gelfand
Mr. Mark Giladi
Mr. and Mrs. Harold Goetz
Mr. Ronen Gold
Mr. and Mrs. Stephen Gregoli
Dr. Sabina Hirshfield
Ms. Doreen Hochberg
Mr. Ken Litwin
Ms. Deanne B. Loonin
Mr. and Mrs. Donald G. Loonin
Loonin Family Fund
Mr. Eric Orzick
Mr. and Mrs. Gary A. Pomponio
W I N T E R
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Mrs. Michele Quinones
Mr. and Mrs. Sheldon Reiter
Mr. Joel Rubinfeld
Mr. and Mrs. Mark Salameh
Mr. Philip M. Schatz
Mr. and Mrs. H. Joel Schatz
Mr. Bradley D. Schwartz
Ms. Leslie F. Schwartz
Ms. Danielle Shapiro
Ms. and Mr. Pearl Shapiro
Mr. Steven Shapiro
Mr. Joel Shatz
Dr. Jeff C. Sklarin
Mr. and Mrs. Leon H. Turner
Mr. Jacob Warren
Mr. and Mrs. David S. Weinberg
Mrs. Danielle Wiesen
Tribute(s) for Rylee Skodras
Allied Industrial Group
Tribute(s) for Olivia Smiley
Mr. Emanuel C. Hoover
Insulation Products Corp.
Tribute(s) for Emma Smith
Ms. Ellen E. Daly
Tribute(s) for Lauren M. Smith
Mr. and Mrs. Peter J. Smith
Tribute(s) for PJ Smith
Ms. and Mr. Bonnie Smith
Tribute(s) for Samantha
Smith
Mr. and Mrs. David Henderson
Mr. and Mrs. David W. Karr
Mrs. Michele G. Smith
Tribute(s) for Alexandra
Spear
Ms. Jessica Hart
Mr. and Mrs. Thomas A. Olear
Mr. and Mrs. John Zaso
Tribute(s) for Trent Sphar
Mrs. Dorothy Ruggles Stern
Tribute(s) for Andrea Starnes
Mr. and Mrs. Mark S. Starnes, Jr.
Tribute(s) for Sara Stern
Tribute(s) for Jarrod D.
Stewart
Ms. Carol A. Oldenburg
Tribute(s) for Colin Stoddard
Gaylord W. Coleman
Tribute(s) for Nathan Stowell
Ms. Marcy Kirsch
Tribute(s) for Adelyn
Stubanas
Mr. James Heacock
Tribute(s) for Adam Sullivan
Mr. John Thompson
Tribute(s) for Karin A. Sullivan
Mr. John Thompson
Sullivan
Mr. and Mrs. Jack Sullivan
Tribute(s) for Robert M.
Sullivan
Mr. John Thompson
Tribute(s) for William Sullivan
Mr. John Thompson
Tribute(s) for Hailey Sutton
Mr. and Mrs. Gary L. Overkamp
Mr. and Mrs. Robert Winkelmann
Tribute(s) for Emily B.
Szilagyi
Mr. and Mrs. Peter G. Schulam
Mrs. Ann Wilson
Tribute(s) for Will Taylor
Mrs. Carol Handy
Mrs. Megan McCloskey
Tribute(s) for Benjamin Theis
Mr. and Mrs. Bruce Magnuson
Mr. and Mrs. James Markfort
Tribute(s) for Kathy M. Trapp
Lt. Col. and Mrs. Dick A. Trapp
Tribute(s) for Ashley Triemer
Mr. and Mrs. William L. Triemer
Tribute(s) for Andrew R.
Trundle
Mr. and Mrs. Randy E. Hazard
Tribute(s) for Ryan Turner
Mr. and Mrs. Joseph F. Hovekamp
Tribute(s) for Kurt T. Ullrich
Ms. Anita Ullrich
Tribute(s) for Michael Valdez
Mrs. Elissa Romero
Tribute(s) for Michael A. Verdin
Mr. David L. Prescott
Tribute(s) for Theresa L.
Vertrees
Ms. Renae Bailey
Tribute(s) for Riley Vogel
Mr. and Mrs. Douglas J. Van Dyke
Tribute(s) for Heather
Wachter
Mr. and Mrs. Theo Regello
Tribute(s) for Dawn M.
Walker
Anonymous
Tribute(s) for Jay P. Wareham
Mr. and Mrs. Curtis Thompson
Tribute(s) for Eli Warner
Mr. and Mrs. Warren G. Stauffer, Jr.
Mrs. Shannon Warner
Tribute(s) for Adrienne
Wasserman
Mr. and Mrs. Gary Wasserman
Tribute(s) for Will Wasserman
Mr. and Mrs. John Badorf
Ms. Marcia Leonard
Tribute(s) for Savannah
Watson
Mr. and Mrs. Keith R. Kappes
Tribute(s) for Lila Wendling
Wendling Company, LLC
Tribute(s) for Jerome P.
White
Mr. and Mrs. William J. White
Tribute(s) for Amanda
Wiezalis
Mr. and Mrs. William P. Stebbins
Tribute(s) for Ashley Wiezalis
Mr. and Mrs. William P. Stebbins
Tribute(s) for Lindsey E.
Wilson
Mr. and Mrs. Thomas Engle
Tribute(s) for Tori Yamada
Mr. Tim Ching
Tribute(s) for Tavi Yokoyama
MW Group Ltd.
Tribute(s) for Alyssa Youmans
Mr. and Mrs. Greg A. Altberg
Mr. and Mrs. Arthur A. Antiporda
Ms. Christina Baik
Mr. Michael E. Bailey
Mr. Harley Barnes
Ms. Janet Berry
Mr. and Mrs. Tom Beyer
Mr. and Mrs. Andrew Bistline
Ms. Andrea Bracken
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Ms. Debra Bracken
Mr. and Mrs. Edward Brady
Mr. and Mrs. V Crenshaw
Mr. and Mrs. Randy S. Dirks
Mr. and Mrs. Thomas Elliott
Mr. and Mrs. Charles E. Ferrell
Mr. and Mrs. Scott Finley
Mr. and Mrs. John Frahlich
Mr. and Mrs. Paul V. Franke
Mr. Joel S. Fredrickson
Mr. and Mrs. John R. Gendreau
Mr. and Mrs. Dave E. Glass
Mr. and Mrs. Douglas J. Glass
Mr. and Mrs. John W. Goff
Mr. and Mrs. Kenneth G. Grimes
Mr. and Mrs. John M. Groom
MR. William S. Grubb
Ms. Sherry A. Hike
Ms. Beth Hubbard
Mr. and Mrs. Tim Kilgannon
Ms. Diane Klinkerfues
Mr. and Mrs. James P. Konrad
Mr. Jeff S. Kramer
Ms. Sandra Kramer
Mr. and Mrs. David L. Kruse
Mr. and Mrs. James C. Lockhart
Mr. and Mrs. Joe H. Martin
Mr. and Mrs. Stephen R. Mason
Mr. and Mrs. Jorge M. Mayor
Mr. and Mrs. Rory T. Peachey
Mr. and Mrs. Robert F. Rendall, Jr.
Mr. and Mrs. Michael A. Rentos
Mr. and Mrs. Philip P. Rhodes
Mr. and Mrs. R. Rimbert
Mr. and Mrs. J. C. Robb
Mrs. Lynne O. Robbins
Ms. Jennifer L. Roswell
Mr. and Mrs. Jose Ruiz
Mr. and Mrs. Lorne M. Sedlacek
Shawn Gaffney Memorial Fund
Ms. Mary Shrader
Ms. Hannah D. Tenneson
Mr. James O. Thompson
Mr. and Mrs. Otto Wilson
Mr. and Mrs. Robert L. Wing, Jr.
Mr. and Mrs. Bill A. Youmans
Mr. and Mrs. Gerald P. Youmans
Mrs. Jacqueline Youmans
Ms. Catherine M. Zimmer
Ms. Kathleen Zimmer
Mr. Mark S. Zimmer
Tribute(s) for John
Zarbetski
Mr. Thomas W. Ozgo and Mrs.
Thelma M. Ozgo
Tribute(s) for Paul Zarbetski
Mr. Thomas W. Ozgo and Mrs. Thelma
M. Ozgo
Tribute(s) for Maria
Zoumadakis
Mr. and Mrs. Lee J. Kapos
Memorials (November 2015 –December 2015)
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 Robert E. Apple
Mr. and Mrs. Robert E. Apple, Jr.
Tribute(s) for Gerald O. Arnst
Mr. and Mrs. Glen A. Call
Tribute(s) for Abateni
Ayanaba
Mrs. Muriel Ayanaba
Tribute(s) for Bruce G. Barnes
Anonymous
Mrs. Eileen Blackwood
Mr. and Mrs. Joe Machado
Tribute(s) for Jack Beard
Mr. and Mrs. Jeffrey Beard
Mr. and Mrs. Dave Hines
Mr. Harold M. Martin and Ms. Marie
C. Block
Mr. and Mrs. Ronald McGuire
Mr. and Mrs. Brad R. Vandenberg
Ms. Angela E. Wagner
Tribute(s) for Shane Brickey
Mr. Matthew Braun
Tribute(s) for Quinn
Ramondetta Broome
Mr. and Mrs. Harry Broome Jr.
Tribute(s) for Heather J.
Buntrock
Mr. and Mrs. Damien L. Amore
Mr. and Mrs. William M. Anderson
Anonymous
Mr. and Mrs. Nathan D. Ansell
Mr. and Mrs. Joseph J. Anselmo
Mr. and Mrs. Joseph Arnold
Ms. Carol A. Awe
Bassett Auto Repair, Inc.
Mrs. Bernard Beem
Mr. and Mrs. W. Wayne Beem
Mr. Renate Berenz
Mr. and Mrs. Carl Breitlow
Mr. and Mrs. Brett Buntrock
Mr. and Mrs. Gordon Buntrock
Mr. and Mrs. Loren Buntrock
Mr. and Mrs. Paul Buntrock
Mr. and Mrs. Myron Dagley
Mr. and Mrs. Dennis F. Debennette
Ms. Amy Drissel
Mr. and Mrs. Jerry Dunnick
Ms. Kathleen Evert
Mr. Patrick M. Fitzgerald
Dr. Lynn Florian
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Forever Builders, LLC
Mr. and Mrs. Harold W. Frush
Mr. and Mrs. Steven M. Gunderson
Dr. Cecelia Harris
Heather Joy Memorial Fund
Mr. and Mrs. John T. Heeter
Mr. and Mrs. Timothy J. Heeter
Ms. Shirley Hill
Mr. and Mrs. G.D. Janus
Jim Burke Excavating, Inc.
Mr. and Mrs. Todd Linna
Mr. and Mrs. Brian Lother
Ms. Mary Maxwell
Melka’s Roofing, LLC
Modern Heating Company
Olson Comfort Services, Inc.
Mr. and Mrs. Robert Paster
Mr. and Mrs. Thomas R. Rice
Richmond Motor Sales
Mr. and Mrs. Thomas J. Roberts
Mr. Steven Scuderi
Mr. and Mrs. Jeffrey F. Smith
Mr. and Mrs. Larry A. Stevens
Mr. and Mrs. Ryan Sullivan
Mr. and Mrs. William W. Sultan, Jr.
Ms. Shirley A. Westerlund
Mr. Thomas M. Winslow
Mr. and Mrs. David W. Zerrien
Tribute(s) for Sherrie Busel
Mr. and Mrs. Richard A. Daniels
Tribute(s) for Matthew B.
Canfield
Mr. and Mrs. Bruce Canfield
Tribute(s) for Ronda Cohen
Charles and Ann Quilter Charitable
Trust
Tribute(s) for Matthew Colby
Mrs. Margie Colby
Mr. Mark Colby
Tribute(s) for Richard
Connors
Ms. Linda G. Connors
Tribute(s) for David R. Cook
Mr. and Mrs. Thomas Engle
Tribute(s) for Carrie Cooper
Mr. and Mrs. Will N. Cooper
Tribute(s) for Helen Crouthers
Ms. Jeanne Abert
Alton Casino
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Croxford & Company, PC
Ms. Julie L. Garber
Mr. and Mrs. John Granger
Mr. Conrad Kirby
Ms. Phyllis Larkin
Mr. and Mrs. Nick Parker
Mr. Vince Stone
Mr. and Mrs. Thomas Wilson
Tribute(s) for Chester R.
Dolan
Ms. Ann C. Sherwood
Tribute(s) for Ryan Epplin
Mr. and Mrs. Fred Epplin
Tribute(s) for Heidi Erb
Mr. Jay B. Erb
Tribute(s) for Andrew Foster
Ms. Dawn L. Kile
Tribute(s) for Philip C.
Franklin
American Greeting Corp.
Anonymous
Mr. Larry Boulden
Mr. and Mrs. Joseph Fleming
Mrs. Mary I. Gazdik
Mr. and Mrs. Carl Moeck
Ms. Joyce T. Powers
Mr. Ronald Ring
Mr. Michael L. Ward
Tribute(s) for Lucas S.
Garbutt
Ms. Gloria L. Garbutt
Tribute(s) for Andrew J.
Geljookian
Mr. and Mrs. George P. Quinn, Jr.
Tribute(s) for Nick Guy
Mr. and Mrs. Kenneth G. Baughman
Tribute(s) for Margo Hamm
Mr. and Mrs. Charles Brickey
Tribute(s) for Anne Heilman
Mr. and Mrs. David Gurowsky
Dr. and Mrs. A. Schwab
Tribute(s) for Lois M. Hogan
Mr. Michael Hogan
Tribute(s) for Frances Hong
Ms. Rose Hong
Tribute(s) for David Howell
Mr. and Mrs. James R. Trimm
Tribute(s) for Jerry Jablonski
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Tribute(s) for Laverne Jantzi
Mrs. and Mr. Myrtle M. Jantzi
Tribute(s) for Andrea Kebbel
Mr. and Mrs. Paul A. Firetto
Mrs. and Mrs. Niels C. Petersen
Tribute(s) for Larry Kelly
Dr. Raymond W. Chan
Tribute(s) for Michael Kenyon
Mrs. Debra Lentz
Tribute(s) for Aglaia
Koumoullos
Mr. and Mrs. Chris Koumoullos
Tribute(s) for Delores Leitner
Mr. and Mrs. Robert Crockett
Mr. Richard Meyer
Tribute(s) for Mica Livingston
Mr. and Mrs. Robert G. Sloan
Tribute(s) for Sherril A.
Malesky
Mrs. Audrey Malesky
Tribute(s) for Sheila Marton
Mr. and Mrs. Richard Beldner
Mr. Frederic Marton
Mrs. Nina Zubkoff
Tribute(s) for William J.
McDonald
Mrs. Joanne Bankert
Mrs. Nanette Cutrona
Tribute(s) for Scott
McGinnis
Dr. Courtney Little
Tribute(s) for W. Irving
Mehrer
Mr. and Mrs. Perry Allwood
Mr. and Mrs. Gary Best
Mr. and Mrs. Robert Fessler
Mr. and Mrs. Wayne Gauger
Mr. and Mrs. Michael Gooding
Mr. and Mrs. William Leimkuehler
Mr. and Mrs. John Mehrer
Ms. Mary K. Niemeier
Mr. and Mrs. David Redwine
Ms. Elizabeth A. Rodgers
Mr. Mike Schumacher
Ms. Shirley Shewmaker
Mr. and Mrs. Robert Thompson
Ms. Lisa Young
Tribute(s) for Stephen Morris
Ms. Beth Smith
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Tribute(s) for Brian Niles
Mr. Richard H. Metzger
Mr. and Mrs. Donald H. Niles
Tribute(s) for James W. Oliver
Mr. and Mrs. Edward D. Stone
Tribute(s) for Jackie Olivo
Mrs. Consuelo C. Roche
Tribute(s) for Francine L.
Ostrow
Mr. Peter Ostrow
Tribute(s) for Rachel
Pasquale
Mr. and Mrs. Robert E. Horton
Tribute(s) for Elaine Quinones
Mr. and Mrs. Christopher Turner
Tribute(s) for Frank J. Reilly
Mr. and Mrs. Richard Stewart
Tribute(s) for Joyce Roberts
Tribute(s) for Micheal P.
Rovey
Mr. Herman Rovey
Ms. Roberta Rovey
Tribute(s) for Mariah S. Rudi
Mr. and Mrs. James E. Adams
Tribute(s) for Lillian Saville
Mr. and Mrs. Arnold R. Schlisserman
Tribute(s) for Adam G. Scott
Mr. and Mrs. Robert T. Scott
Tribute(s) for MIchael
Sorrells
Dr. and Mrs. Gary J. Sorrells
Tribute(s) for Duane Spaedt
Tribute(s) for Bertie Swank
Mrs. Miriam S. Green
Tribute(s) for Danielle W.
Trewin
Mr. Parker Trewin
Tribute(s) for Dee R. Triemer
Mr. and Mrs. Joseph Angelo
Mr. and Mrs. Dennis A. Barchuk
Bristol Myers Squibb Foundation
Mr. and Mrs. Charles A. Graham
Mr. and Mrs. Jeremy Krantz
Mr. and Mr. J. Robert Lammers
Tribute(s) for Ginger Turczyn
Ms. Suzanne Allerton
Ms. Rosemary Childs
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Mrs. Nanette Cutrona
Mrs. Kathleen Dent
Mr. and Mrs. John Fasolka
First Presbyterian Church of
Allentown
Mary Beth Grace
Mr. and Mrs. Lester Hair
Mrs. Carol Handy
Mrs. Susan J. Hersh
Mrs. Mary S. James
Mr. Alex Khachaturian
Mr. and Mrs. Francis X. McDonald
Ms. Kathleen Michel
Parkland Lady Trojans Basketball
Booster Club
Mrs. Joanne Priscandaro
Mr. and Mrs. Daniel Roach
Mr. and Mrs. Dennis Schilling
Mr. and Mrs. Raymond Schleiden
Ms. Carla Turczyn
United Way of King County
Mr. Adam Vitale
Ms. Andrea Vitale
Ms. Kristin Yudt
Tribute(s) for Alma A. Tutrone
Mr. and Mrs. Michael R. Augustine
Tribute(s) for Anthony Viola
Mrs. Christine Viola-Weiss
Tribute(s) for Jeb Ward
Mr. and Mrs. David Herrington
Mr. and Mrs. David A. Kindy
Mr. and Mrs. T. Robert Ward, Jr.
Dr. and Mrs. William G. Ward
Tribute(s) for Amy Weber
Mr. and Mrs. Charles A. Weber
Tribute(s) for Roger White
Mr. Marlon S. Cherry
Tribute(s) for Brandon
Wilbanks
Mr. Dan Wilbanks
Tribute(s) for Greg Wilson
Mr. and Mrs. K. Robert Evenson
Tribute(s) for Christopher T.
Winkler
Mr. Jonathan Winkler
Tribute(s) for Nicholas T.
Wolthuis
Mr. and Mrs. Thomas Hooker
S c l e ro s i s
Alliance
A Call To Action: Don’t Miss These
Important Research Opportunities
D
o you or your loved one have
TSC and epilepsy? Epilepsy
caused by TSC is one of the
rare epilepsies in the net work and
occurs in about 85% of individuals with
TSC. More than 230 caregivers of individuals with TSC and epilepsy or adults
with TSC and epilepsy have registered
for the Rare Epilepsy Network (REN).
The survey takes about 45 minutes to
complete but you can take several days
to finish the survey.
So please go to https://ren.rti.org/
Enroll and sign up to make a difference
in research today!
If you have any questions, please contact
Jo Anne Nakagawa at jnakagawa@tsalliance.
org or 1-800-225-6872 extension 218.
The REN is a collaboration between the Epilepsy Foundation, RTI International, Columbia University, and organizations that
represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN is funded by the
Patient-Centered Outcomes Research Institute (PCORI).
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University of Alabama at Birmingham,
University of California at Los Angeles,
University of Texas at Houston
Autism Spectrum Disorder
(ASD) and Intellectual
Disability (ID) Determinants
in Tuberous Sclerosis
Complex
We are enrolling individuals between the
ages of 3 and 21 years old with a diagnosis
of tuberous sclerosis complex (TSC) and
autism spectrum disorder (ASD) and/or
intellectual disability (ID) for a new study.
The goal of this study is to gain a better
understanding of ASD/ID in individuals
with TSC so that effective treatments and
interventions for ASD/ID can be found.
Where is this study taking place?
Boston Children’s Hospital, Cincinnati
Children’s Hospital Medical Center,
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P ER SP ECT I V E
Who are the 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)
Who is eligible to par ticipate?
Individuals diagnosed with TSC and autism
spectrum disorder and/or intellectual
disability are eligible to participate in this
study if they are between the ages of 3
and 21 years old.
What will we do? The study involves
five visits over a two year period. Three of
the visits occur on-site at a study location.
The other two visits occur as phone calls.
The on-site visits include blood draws,
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physical/neurological exams
and behavioral testing.
What is the time commitment/cost to
participate? There is no fee to participate
in this study, and there will be no financial
compensation for participation in this study.
What are results are provided?
Summary scores of your child’s behavioral
testing will be provided to you.
Contact Information If you are interested
in learning more about this study, please contact Rachel Friedman at Rachel.friedman@
childrens.harvard.edu or 617-919-3499.
Other Studies
For a full list of current clinical trials
and studies, visit www.tsalliance.org/
clinicaltrials or look for weekly postings
on www.facebook.com/tsalliance or our
online support community at tsalliance.
inspire.com.
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ADULTS WITH TSC CORNER
A Look Back at the Work of the TS Alliance
Supporting Our Adult Community
BY KEITH HALL
I
n 2006 at the National TSC
Conference in Chicago, attendees
made it very clear to the TS Alliance
that they were seeking more in the way
of support and services for the adult
population impacted by TSC. As a result
of that push, the TS Alliance’s Adult
Advisory Committee was rebranded as
the Adult Issues Committee, which soon
began meeting to address how to better
serve these folks. The initial organizational efforts to better support adults
and the TS Alliance soon amended its
Articles of Incorporation to highlight
the importance of providing services
over the course of a lifetime. Another
significant milestone was the first-ever
TSC Adult Summit. By the end of 2006,
the first edition of the Adult Journal
was published and more adults were
becoming involved with the leadership of
Community Alliances. Momentum was
clearly building.
Over the next few years with the budding popularity of social media, the TS
Alliance launched outreach initiatives on
various online platforms along with a page
dedicated to adults on the TS Alliance
website. While this was taking place, the
group now known as the Adult Task Force
was working to develop details of the Adult
Initiative (AI), which launched in 2011 to
form the roadmap for engaging independent
adults and the caregivers of those requiring
more assistance in daily living.
Five years later in 2016, we can take
pride in having accomplished a number of
the goals the AI set out to achieve along with
starting to develop additional services not
initially targeted. Among the goals reached,
a network of Adult Regional Coordinators
across the country has been put in place
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to spur adult involvement
and disseminate information
to those seeking support.
Among the work-in-progress
goals, we continue to seek
more TSC Clinics willing
to see patients who are
Keith Hall
aging out of the pediatric
care spectrum; we also
encourage the adult TSC population to
consider enrolling in the TSC Natural
History Database. Also, we are glad adult
perspectives are being represented in the
TS Alliance grant review process.
As far as new efforts that have evolved,
certainly the Dependent Adult Transition
Resource Coordinator role is beginning to
take hold. Under this effort, knowledgeable caregivers are tapped to share their
expertise navigating the myriad of services
available to families of TSC Individuals.
The other exciting initiative is the Junior
Leaders program whose concept hatched
coming out of the World TSC Conference
in summer 2014.
While we have accomplished much,
there is still so much more to do. We must
continue to work to find the next generation
of leaders so our Community Alliances
and Board of Directors will remain strong.
We must identify creative ways to bolster
participation in Adult Topic Calls so a larger
audience can benefit from the wisdom of
our expert speakers. We must persist in
providing up-to-date and correct information
on the treatment and management of TSC
to our adult population so they can have the
best quality of life. We must continue to work
to find easy-to-understand explanations for
new initiatives like the Biosample Repository
that will drive future treatments and possibly a cure. And we must embrace new
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paradigms like telemedicine
that will make access to
doctors and nurses – and
perhaps someday even
researchers – simple and
commonplace, especially
for those in areas where
extraordinary medical care
is not nearby.
Much of what has happened over the
last decade plus of the more than 40-year
life of the organization as regards Adult
Services is due to the hard work of parents,
individuals and TS Alliance staff trying to
make life a little easier for those who will
follow in the their footsteps. There are too
many names to mention to recognize all
those who made a significant difference.
But it is easy to recognize those primarily
responsible for our current success. Without
the over and above contributions of current
TS Alliance staff members driving these
improvements, Dena Hook and Christen
Bell foremost among them, there is little
doubt we could have reached these targets.
They have embraced outreach to families
and services to adults with seemingly
limitless energy. Besides adult issues,
they also help TSC families by providing
school system supports, fostering the TS
Connect program, assisting in procuring and
training Clinic Ambassadors and making
sure our content can be understood by our
Spanish-speaking friends.
There are only a few certainties for what
the next decade will mean for folks living
with TSC. We know the TS Alliance will
keep building upon the strong and stable
foundation it has created for continued
success and will lead the effort for finding
a cure while improving the lives of those
affected. Of that we can be sure.
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TS Alliance Welcomes
New Board Members
T
he Tuberous Sclerosis Alliance
is pleased to welcome five new
members to our Board of Directors,
including Michael Caggiano, Timothy
Dills, Bonnie Hogue Duffy, Jim Maginn
and Matthew Simonian. They will each
serve three-year terms.
Michael Caggiano began his career
with one of the Big Four accounting firms.
Most recently, Caggiano was president of an
interim executive services company, where
he placed C-suite executives and senior
level professionals with a wide variety of
client companies prior to joining Robert Half
Executive Search as a Managing Director.
Caggiano’s background as a CEO, President,
COO and CFO of various enterprises allows
him to bring a unique range of experience
to the TS Alliance’s Board of Directors. In
addition, he has served on the boards of
banks, professional service firms, technology
companies, foundations, and international
nonprofits. Caggiano lives in Washington, DC.
Timothy Dills and his wife have a
36-year-old son with TSC, and they’ve been
involved with the TS Alliance for more than
34 years. Dills has been involved in TSC
fundraising and community awareness efforts.
He has been active in the TS Alliance’s
annual March on Capitol Hill for the past
four years. Dills is the President of Scitor
Corporation, where he has worked for more
than 26 years, 7 years as the President, and
7 years as a Vice President. His direct and
indirect responsibilities have included Finance,
Human Capital (Benefits, Compensation,
Employee Relations), Information Systems,
Security and Contracts. Dills will serve as
Vice Chair of the Board of Directors. He
lives in Great Falls, VA.
Bonnie Hogue Duffy is a Senior
Advisor at KVG, LLC in Washington, DC.
She previously worked at QGA Public Affairs
as a Director. She joined QGA in 2007
after serving as Director of Federal Policy
at the Alzheimer’s Assocation, where she
developed and managed its federal issues
strategy. In addition, she has 10 years of
experience working the U.S. Senate as a
professional staff member on the Senate
Help Us Update Your Contact
Information and You May Win
a $25 Gift Card
16
Yes, please update my information in the
TS Alliance database.
Name
Have you recently moved or changed your e-mail
address or telephone number? The TS Alliance would
like to update your information in in our database. To be
entered into a drawing for a $25 gift card just send us your
updated information by e-mail, regular mail, fax, or text to:
Address
• Regular mail: Cristina Angel, TS Alliance, 801
Roeder Rd., Suite 750, Silver Spring MD 20910
• E-mail: [email protected]
• Fax: 888-330-1853
• Text: 240-535-8306
Relationship to TSC
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Special Committee on Aging, a legislative
assistant to Senator Jack Reed, and a
Senior Health Policy Advisor to the Senate
Democratic Policy Committee. Duffy lives
in Chevy Chase, MD.
Jim Maginn is Managing Partner of
Watt Advisors in Santa Monica, CA. He
is the grandfather of Amelia and Abby
Cooper, 15-year-old twins who have TSC.
Maginn joined Watt in 1986 as Senior Vice
President/Chief Financial Officer. In the
early 1990s, he assumed the position of
President of Watt Companies; in 2010, he
stepped down as President to start a new
division. Maginn also spent 20 years in the
Navy, both active duty and reserves. He lives
in Manhattan Beach, CA.
Matthew Simonian is a consultant
for several companies in the epilepsy space,
including UCB Pharma and Brain Sentinel, and
was previously Senior Director of Marketing
for Cyberonics, Inc. He has more than 18
years of worldwide experience in, and a
deep understanding of, epilepsy treatment
marketing. Simonian lives in Houston, TX.
City/State/Zip
Phone
E-mail
In addition to being entered into a drawing for a $25 gift card, you will
also be kept informed about everything from research to current treatments and management of TSC. Please update your information today!
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Reading Recommendations
What’s So Special About
Special Education
By Susan McBrine, TS Alliance Founding Mom
What’s So Special About Special Education is a
short, practical, realistic guide for teachers in
special education—particularly those working
with children with severe disabilities—to more
effectively communicate with classroom parents. It is written
from the perspective of a veteran special education teacher
and mother of a child with severe disabilities (tuberous sclerosis
complex), who often mentored new teachers seeking advice
about how to deal with their students’ parents. The book offers
teachers information about how to communicate with parents
and form a partnership that will make the classroom experience
more effective and the teacher’s job easier. It covers things every
special ed teacher needs to know to succeed in this challenging
field, and offers a view from both sides of the IEP. This information
is often not taught in teacher training courses, but it is essential
for teachers struggling with the many facets of their students’
disabilities. Parents and other school professionals will benefit
from this book, and may find it helpful to give it to their students’
teachers. It is a useful handbook for in-service or for reading
before IEPs and the beginning of every school year.
Teddy Rocket: The Astronaut
With TSC
By Jeanette Man
Teddie Rocket is an awesome-sauce astronaut
born with tuberous sclerosis complex (TSC). He
proves that he can still have adventures despite
this condition and uses his wildest imagination
to make hospital visits less frightening. This whimsical and
lighthearted story is the perfect outreach to any child affected
by TSC or other special needs conditions. All proceeds from
this book will be donated to Tuberous Sclerosis Alliance.
a contributor to numerous publications, classrooms, conferences,
and websites around the world coalesce to create a guide for
all who come in contact with a child on the autism spectrum.
This updated edition delves into expanded thought and deeper
discussion of communication issues, social processing skills, and
the critical roles adult perspectives play in guiding the child with
autism to a meaningful, self-sufficient, productive life.
A bonus section includes ten more essential, thoughtprovoking “things” to share with young people on the spectrum
as they cross the threshold of adulthood, and an appendix of
more than seventy questions suitable for group discussion or
self-reflection. This new edition sounds an even more resonant
call to action, carrying the reader farther into understanding the
needs and the potential of every child with autism.
Color Me Calm
By Lacy Mucklow
Our lives become busier with each passing day, and as technology escalates, so
does our access to work, obligations, and
stress. Constant stimulation and expectation have left us burnt out and distanced from the present
moment. “Now” has become something that happens online,
not in the space and time that we physically occupy. Color Me
Calm is a guided coloring book designed for harried adults.
Art therapist Lacy Mucklow and artist Angela Porter offer up
100 coloring templates all designed to help you get coloring
and get relaxed. Organized into seven therapeutically-themed
chapters including Mandalas, Water Scenes, Wooded Scenes,
Geometric Patterns, Flora & Fauna, Natural Patterns, and
Spirituality, the book examines the benefits of putting pencil
to paper and offers adults an opportunity to channel their
anxiety into satisfying, creative accomplishment. Part of the
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the perfect way step back from the stress of everyday life,
color, and relax!
Ten Things Every Child With
Autism Wishes You Knew
How To Have That Difficult
Conversation You’ve Been
Avoiding
By Ellen Notbohm
By Dr. Henry Cloud and Dr. John Townsend
Framed with both humor and compassion, this
book describes ten characteristics that help
illuminate—not define—children with autism.
Ellen’s personal experiences as a parent of
children with autism and ADHD, a celebrated autism author, and
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The practical handbook for having that difficult
conversation you’ve been avoiding by the
authors of the award-winning and bestselling
Boundaries. Now with a discussion guide!
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TSC CLINICS UP CLOSE:
Tuberous Sclerosis Center of Excellence at
Le Bonheur Children’s Hospital, Memphis, TN
T
he TS Center of Excellence at
Le Bonheur Children’s Hospital
received TSC clinic designation in
2010 under the direction of Dr. James
Wheless (neurology) and co-director Dr.
Kate Van Poppel, who now practices in
Concord, North Carolina. John J. Bissler,
MD (nephrology), who is well known in
the TSC community, assumed leadership
of the clinic in 2013 when he moved
from Cincinnati Children’s Hospital
Medical Center. Dr. Wheless serves as
Co-Director. Additional staff members
include Karen Butler, RN , Epilepsy
Monitoring Unit Coordinator; Dr. Steve
Fulton (neurology); Dr. Stephen Parker
(neurology) ; Victoria Poellnit z, RN ;
Ashley Pounders, RN, BSN, CCRN, TSC
Coordinator; Creedon Ryan, RN; TSC
Clinic Ambassador Brittany Schwaigert;
Dr. Sarah Weatherspoon (neurology);
and Dr. Thomas Yohannan (cardiology).
This article continues an interview
series about the healthcare professionals
and staff who provide care and educational
support to those affected.
Dr. Bissler, do you and Dr. Wheless
see TSC patients on different days
or are you both available on the
same day?
Nephrology and Neurology sees TSC
patients on the same days. In addition to Dr.
Wheless, there are two other neurologists
who care for TSC patients: Drs. Sarah
Witherspoon and Stephen Fulton. Patients
can come to Memphis and stay in the FedEx
House for free. They can often be imaged
over the weekend, followed by their visits
Monday and/or Tuesday. After their visits
are complete, many of our patients take
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time to look around Memphis before they
return home.
Your clinic has a clinic ambassador
whose role includes providing emotional support to new families and
informing them about TS Alliance
and the resources, we provide. What
has been the response from families
when you tell them about Brittany?
The families absolutely love Brittany! They
make a real and lasting connection. We are
very lucky to have her as part of our clinic.
renal angiomyolipomata that were often
misdiagnosed as cancer. Interventions,
such as nephrectomies, were more common
than expected.
You have a new nurse coordinator on
your team, Ashley Pounder. What is
her primary role?
Ashley is fabulous! Although she is
new to our clinic, she has done a great job
with coordinating the care for our patients.
She has tremendous empathy for families
and has an amazing work ethic. She is
remarkably organized and efficient and is
adding a depth of patient care coordination
that is extraordinary. She is transforming
how we care for patients and making sure
they get the care they need and deserve.
I am so pleased with the changes she has
made, especially opening the communication
gap between our clinic and our patients
and families.
Tell us a little bit about the telemedicine
program you started at Le Bonheur.
Although I love to see my patients and
families in person, travel can sometimes be
difficult for our patients, which prevents
them from getting the care they need. I have
had a long-time interest in telemedicine
for our patients. The program we have in
Memphis is very exciting, and the possiblility
of being able to offer telemedicine to my
patients was one of the reasons I decided to
relocate to Memphis. We have developed a
telemedicine program specifically designed
for TSC. Right now we are only offering
nephrology telemedicine visits; however, we
plan to offer other telemedicine services in
the future. We can provide center-to-center
services as well as center-to-patient services,
which allows simultaneous visits between
a patient and their doctors, and the patient
does not need to leave the home. I think
this approach can really help those patients
who are unable to travel and who cannot
get the care they need elsewhere. Making
sure patients with TSC receive the best
nephrology care is very important to me!
While at Cincinnati Children’s you
were principal investigator of a natural
history study of renal manifestations in
people with TSC, which you conducted
through a consortium of TSC centers.
Is there any preliminary information
you can share from your study?
The most important parts of the study
include the frequent presence of fat poor
Dr. Wheless, were there any challenges
you faced in starting the TSC Clinic at
Le Bonheur Children’s in 2010?
The challenge is the same one faced by
most multi-disciplinary clinics: that of getting
all of the various specialties interested in
your disease, and then all working together
for the patient’s benefit. This requires talking
to your colleagues, finding the ones who
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can do this, then having
a very good nurse coordinator. Having the support of the
hospital was essential to this task.
Lauren Siebrase was the clinic nurse
coordinator until Dr. Bissler took over
as Director. Does she still assist with
management of the TSC patients with
neurological issues?
Lauren has since obtained her Nurse
Practitioner degree, so her role in clinic has
changed. I now have a new nurse, Creedon
Ryan who works with me, and Dr. Bissler’s
coordinator, Ashley Pounders. Interestingly,
his new coordinator is Lauren’s identical twin!
Are you still recruiting individuals
for your clinical trial of a sirolimus
screen cream for facial angiofibromas
in children and adults with TSC and
can you share preliminary results?
Yes, the study is still open. We have
long-term data now going out over 3 years,
the cream still works, and is of cosmetic
quality. There is no barrier placed over it
once applied, so the parents all say it is
very easy to use (once daily application, at
bedtime, or even with the child asleep) and
continues to work great without side effects.
And are you conducting any other
TSC research studies?
We participated in the Afinitor seizure
study, which is finished, and in the open-label
phase now. We are collecting blood vessels
from the pial surface of the brain (during
epilepsy surgery, in children with TSC) for
research Dr. Bissler is doing.
Tell us what motivated you to choose
your career path and how you got
interested in TSC.
Dr. Bissler: I chose to become a doctor
when I was a little boy, in large part because
I watched my mother die of cancer. I saw
how much she suffered, as well as how
much everyone else in my family suffered,
and I wanted to do something with my life
to ease such pain. From a very unlikely
beginning, I put myself through college and
medical school by working, scholarships,
and student loans.
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I saw my first patient with tuberous
sclerosis complex in 1984. I was perplexed
because the tumors were referred to as being
benign; however, they caused a great deal
of suffering and there was no treatment.
I was a fellow with Dr. David Franz and
when he came back to Cincinnati, I helped
him with the TSC clinic in the early 1990s.
I had an interest in the molecular
mechanisms leading to the somatic mutation
associated with angiomyolipoma and cyst
development and began to draw blood on
patients with TSC beyond our clinic. I quickly
saw a huge unmet need for a nephrologist
to help people with TSC and started caring
for many more patients clinically. Ethically,
I could not study the molecular cell biology
without caring for the patient and their family
who needed my clinical care.
Dr. Wheless: I was always interested in
pharmacology, also in medicine, so I decided to
pursue an undergraduate degree in pharmacy,
and then apply to medical school. In medical
school I realized the brain “is where you live”
and enjoyed working with children. This led
to my career in pediatric neurology. At the
time, with my pharmacology background,
I decided to pursue sub-specialty training
in epilepsy, since this was the one area
of pediatric neurology where I could use
this information (at the time, most of the
other conditions could be diagnosed, but
few had medical treatments). Starting on
this career path I saw children with TSC,
as many have seizures. In my first year of
practice I happened to work with Dr. Hope
Northrup, one of the pioneers in the field
of TSC genetics, as we both started our
academic careers at the same institution
on the same day. One of my early papers
was with her, describing identical twins of
which only one had TSC; this was prior to
modern TSC genetic testing. This helped
fuel my interest in TSC.
Ashley Pounders: I have always
wanted to be in healthcare. I decided to
go to nursing school in attempt to pay for
medical school. I fell in love with nursing and
stayed in that profession. I enjoyed getting
to know everything about the patient and
their families and to help them as a whole.
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I worked critical care for many years and
when I heard about the opportunity to
work with Dr. Bissler I knew I had to make
a change. It’s truly an honor for me to work
with someone who is so passionate and
willing to teach. He cares so much for his
patients and for the TSC community world
wide. I am extremely excited to have him
as my mentor and to work so closely with
him. Combined, we are really a great team.
Brittany, you have been in the TS Alliance
TSC Clinic Ambassador Program since
April 2015. What motivated you to
volunteer for this program?
I jokingly referred to myself as the de
facto clinic ambassador for years, due to my
love for the clinic and how much they have
done for my son, Greyson. But, it wasn’t until
2015 that the designation became official.
Greyson was diagnosed in 2008 at Le
Bonheur, and we initially traveled to other
cities for his treatment due to Le Bonheur
not having their clinic designation from
the TS Alliance at the time. When they did
receive their designation as a clinic from
the Alliance, we moved his care back to Le
Bonheur and it truly has been the turning
point for him. They have worked miracles for
him and we are truly in their debt. Whatever
we can do to give back to them, we feel it
is our obligation. It is amazing to have this
world-class hospital right in our backyard!
What are the most challenging aspects
of your work as it relates to those
affected by TSC?
Dr. Wheless: The biggest challenge is
finding resources in the community where
they live. We see patients from many rural
areas, and they are resource poor, with
many people unfamiliar with the disease.
This makes it challenging on many levels,
but especially with regard to developmental
and social services.
Dr. Yohannan: The transitional care
provided to patients with TSC as they grow
into young adults is the most challenging
aspect of my clinical care. Many times,
patients are lost to clinical care in the
process of growing up. Sometimes, the
lack of resources in the community as far
as providing care to these patients makes
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it difficult to establish continuity of care.
Hence, the importance of providing care to
patients in a multidisciplinary environment
like the TSC center of excellence housed
at Le Bonheur Children’s hospital.
Dr. Fulton: The most challenging
cases are always those that have lesions
which are not surgically resectable without
causing significant injury that continue to
fail medical therapy. It is a difficult situation for the parents to be in, knowing that
we understand so much more about the
Minnesota Epilepsy
Group: How One
TSC Clinic Raises
Awareness of TSC
in a Big Way
The “TSC Clinic Without Walls” based
out of the Minnesota Epilepsy Group (MEG)
in St. Paul has maintained an active role
in their partnership with TS Alliance since
they received TSC Clinic designation in
2004, when there were only 14 other
TSC Clinics in the United States. Today,
the number of TSC Clinics has more than
tripled expanding beyond the U.S. with two
in Israel. TSC Clinic Directors and their
team of specialists help raise awareness of
TSC within their community and nationally
by participating in events that include but
are not limited to local educational meetings
with the local volunteer TS Alliance branch;
“Meet the Expert” gatherings; regional and
international TSC conferences; and radio,
TV, and web presentations.
Ashley: Making sure the families and
patients have all the resources they need. I
want every family to thrive with their disability
not just survive.
phenomenal physicians at Le Bonheur, it
keeps them in demand, therefore creating
backup for appointments and hospital
admissions. Keeping those parents calm
and knowing that we are working on
getting them in as soon as possible is a
priority for me.
Brittany: I look at it as such an honor
that it’s difficult to call any of it challenging.
But, sometimes the volume of patients
and families who need guidance can be
overwhelming. Because we have such
What are the most fulfilling aspects
of your work as it relates to TSC?
Dr. Bissler: The opportunity to meet
and work with such amazing people. I feel
very privileged to be involved with such
The TS Alliance applauds Dr. Michael
Frost and his clinical and research team for
their commitment to the TSC community,
particularly throughout 2015. Here
are some ways they have contributed
to raising awareness of TSC over the
past decade:
• The first clinic to participate in the
TS Alliance’s TSC Natural History
Database Project in 2006.
• The TSC Clinic Up Close series
launched after MEG was the cover
story in the TS Alliance magazine in
2008.
• Dr. Frost served as a member of the
2012 International TSC Consensus
Group.
• The MEG doctors, nurses, and
research staff attend the annual
Step Forward to Cure TSC walk,
which the TS Alliance of the Upper
Midwest coordinates every spring.
• Track Session Sponsor at the
2014 World TSC Conference in
Washington, DC.
• Sponsored and hosted a Regional
TSC Conference in St. Paul,
Minnesota in May 2015.
• Dr. Frost was guest speaker at a
Town Hall Education Series on
“Clinical Research and Infantile
Spasms: A Community Call to Action”
held in St. Paul in December 2015.
• In 2015, MEG is invited to join the
TSC Clinical Consortium to participate in future clinical research studies that are conducted by the group.
• Presenting Sponsor of the Encore
Performance of the original play
about the TS Alliance history, FOUR
DECADES | ONE COMMUNITY, in
Minneapolis in fall 2015.
disease, and yet still have difficulty helping
their children.
The Comprehensive Tuberous Sclerosis
Clinic at Texas Children’s Hospital in Houston
recently became the 49th center to receive
TSC Clinic designation from the TS Alliance.
Director: Rohini Coorg, MD
Co-Director: Surya Prasadarao
Rednam, MD, MS
Coordinator: Marissa Bragdon, BSN,
RN, CPN
Age Range: Children and Young
Adults up to age 18 years.
For information or to schedule an
appointment call (832) 825-5046.
The Minnesota Epilepsy Group Staff.
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New TSC Clinic
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amazing patients, families, scientists and
clinicians.
Back row (L-R): Dr. Steven Fulton, Dr. James Wheless, Dr. John Bissler, Dr. Thomas Yohannan.
Front row (L-R): Dr. Sarah Weatherspoon, Victoria Poellnitz, Karen Butler, Ashley Pounders, Creedon Ryan
Dr. Wheless: Seeing the children
improve developmentally and just be able
to be “normal children.” It is great when
their seizure control is improved and they
can have better quality of life.
Dr. Yohannan: The ability to impact
a person’s life throughout his or her lifetime
and to make a meaningful difference in
the lives of these patients because TSC is
a lifelong disease with very heterogenous
clinical manifestations. Also, improving
their quality of life as far as
helping them secure jobs and
be productive citizens of the
community and society.
bringing them something from
the store, or bringing up a meal
Dr. Fulton: Being able to
for them when they can’t leave
educate them about the disease
Brittany Schwaigert,
their children in the room. I love
so they understand, to the best
TSC Clinic Ambassador
hearing success stories, and I’ve
of their ability, exactly what is
been lucky enough to be privy
happening with their child and
to many, many of them.
how it can affect them in the future. One
of the most common parental responses,
Knowing what you know about TSC, if
even when patients have difficulties that
you had the power to make a change
can’t be easily addressed, is they are
in the lives of those affected, what
happy because they finally understand
would it be?
what is happening with their young son
Dr. Bissler: Forgive my simplicity, but if
or daughter. It alleviates stress about
I truly had the power to change the lives of
long-term expectations and planning, so
my patients, I would eradicate TSC. Since
they can get on with enjoying life with
that is not possible, then I want to make
their children.
it possible for patients with TSC to get
the best possible care available to them.
Ashley: Giving families hope. TSC
is such a complex disorder, often when
Dr. Wheless: I wish we had better
families make it to a TSC center they are
medications to help with the behavioral
scared, confused, tired and have misleading
issues faced by the children as they
information. To see these patients and
transition through childhood to adulthood.
families have hope and trust in their medical
I also wish we had an effective medication
team is the most rewarding part of my job.
to improve the developmental outcomes.
Brittany: My absolute favorite part
Dr. Fulton: My first choice would always
of being the Clinic Ambassador is visiting
be to eliminate the disease entirely. Failing
the families in the Epilepsy Monitoring
that, to have all of the patients with TSC
Unit. Because my husband and I are also
who have epilepsy remain seizure free,
on the Family Partners Council at Le
without side effects, for the rest of their
Bonheur, we are able to visit the floors
lives. Seizures are often unpredictable
anytime. I love checking in on the families
and take away any sense of control that
and saying hello, letting them know to call
the children and families have over their
me if they need anything, even as small as
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lives. Having that one change, I believe,
would make an enormous difference in
their quality of life.
Ashley: Eliminating the disorder!
Every family would have unlimited access
to resources (group support, school,
community involvement, etc.) regardless
of income, location, transportation, or
degree of disability.
Brittany: There are just so many things
I wish I could change. It breaks my heart
every time I hear of a new family being
diagnosed. One of the cruelest parts of
TSC is that children are often non-verbal.
My Greyson didn’t speak until he was 5.
Having your child in pain and not being
able to tell you where it hurts, or what is
making them uncomfortable, is absolute
torture to a parent. So, I would wish I could
take away that component of TSC for the
patients and for the families.
How do you manage to balance
your time between your academic/
clinical/volunteer responsibilities
and personal time; and what do you
enjoy doing outside of work?
Dr. Bissler: My honest answer to
this question is that I probably handle the
work-personal time balance poorly. However,
I love spending time with my family and
friends. I am an avid long distance bicyclist
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and I enjoy traveling to other countries to
help care for patients with TSC!
Dr. Wheless: This is always tough,
but that is the part of my job I like. The
variety of getting to do all of these things
makes my job exciting and fun. Outside of
work I like to read, travel, and I enjoy riding
my road bike (I was an avid runner, having
qualified for and completed the Boston
marathon, but now have transitioned to
the bike).
Dr. Yohannan: Fortunately, I have a
good work-life balance. I enjoy outdoors,
traveling and literature.
Dr. Fulton: I manage my time as well
as any physician can I believe, though
there is always room for improvement. I
enjoy spending time outside of work with
my wonderful wife and adorable daughter.
We love hiking vacations so you will often
find us in Yosemite Valley, Glacier National
Park and other such places, enjoying time
outside and away from the city.
Ashley: When you are passionate
about what you do, it becomes a part of
who you are, it goes where you go. My
family is very supportive and instead of
separating the two. my family uses it as
an opportunity for them to learn, grow,
be involved and to appreciate caring for
others who struggle to get the same
opportunities. However, I do enjoy camping, hiking, bonfires, cycling, running and
training for Spartan races.
Brittany, You run a boutique event
design firm in Memphis, how do you
manage to balance your time?
It is difficult! Managing both my boys’
(we also have a neurotypical 4-year-old
named Lachlan) school pickups and drop
offs, running my event business, getting
everything done around the house, and
also volunteering at LeBonheur in a variety
of capacities have me going 15 different
directions pretty much all the time. But,
I feel like it is my responsibility to help
other TSC families wherever and whenever
I can. My husband is also passionate
about volunteering, so it helps that we
do it together! I definitely couldn’t do it
without his support. Outside of work, I
love to craft, read, and paint and Ryan
and I cherish the occasional date night
to try all the wonderful restaurants in
Memphis!
No Ordinary Homecoming Queen
B Y CL A Y TO N NO R M A N, QUI T M AN H I G H SC H OOL ALUM NUS
D
octors told Christi and Daren
Alexander the likelihood their
daughter would survive delivery
was slim. Born with tuberous sclerosis
complex, Bridget Alexander is a walking miracle . Through the power of
prayer, and with the knowledge of great
doctors, Bridget has celebrated every
milestone so far, up to her 19th birthday
in December 2015. Bridget is full of life
and love, and even more so of school
spirit . There’s no bet ter mascot for
the Quitman High School Wolverines
than Bridget! Quitman High School is
located in Louisiana.
In honor of Bridget’s school spirit, she
was nominated by her peers to represent
the senior class on homecoming court,
along with three of her classmates. On
the night of homecoming, while pictures
were being taken and family and fans were
arriving for the court presentation and
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game, Bridget made it a point to speak to
just about every person who walked into
the gymnasium. She greeted everyone
with “Thank you so much for coming!” or
“I’m so glad you’re here!”
After the gym became quiet and the
music began playing, each girl was escorted
by her father to center-court and presented
by the announcer before taking her final
spot. Once all of the introductions had been
made, the announcer read off the name
of Quitman High’s newest Homecoming
Queen: Bridget Alexander. When Bridget’s
name was read, that moment became
a living testament to so many things:
miracles do happen, the power of prayer
does heal, and good people do still exist.
Bridget’s crowning is much more than a
crown. It’s proof that special needs don’t
make ordinary people; special needs make
special people, and I think we can all say
that our Queen is special beyond words!
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CONTINUED FROM PAGE 4
Special Events
Join Us as We Celebrate 15
Years of Comedy for a Cure
Sunday, April 10, 2016
The Globe Theater,
Universal Studios
Hollywood, CA
Honorees
The 15th Annual Comedy for a Cure
begins with a one-hour reception and silent
auction at 5:30 pm, followed by a short
program, live auction and hilarious comedy
performances. Since its inception, Comedy
for a Cure has raised more than $4 million
cumulatively, bolstered by the support
of the “who’s who” in the entertainment
industry and comedy community.
Emcee
Alex Skuby
Honorary Chair
Jim O’Heir
Featured Performers
Headliner
Bobby Collins
Comedian
Wendy Liebman
Musical Entertainment
Kat Perkins
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Comedy for a Cure is proud to recognize
Barbara O’Neill, her daughter Dawn
O’Neill Redfield, and their families
with our Courage in
Leadership Award.
For the past 8 years,
these families have
created an uplifting
atmosphere of hope at
the annual Southern
California Step Forward to Cure TSC walks,
while raising an astounding $664,000.
The O’Neills and Redfields have mobilized
their families, friends, employers, and the
TSC community to make the Southern
California walk one of the largest and most
successful in the United States.
The 15th Annual Comedy for a Cure will
also honor Mo Collins and Ken Kocher. Mo
Collins has been a celebrity spokesperson
for the TS Alliance
over the past five
years , ser ving as
emcee and headliner
at previous Comedy
for a Cure events.
She also performed
in the TS Alliance 40th
anniversary play, FOUR DECADES | ONE
COMMUNITY, on Broadway in New York
and in Minneapolis. Mo currently lends her
voice to the #IAMTSC campaign and on
social media. We are proud to recognize
Mo for her compassionate support of the
TSC community and the TS Alliance.
Ken Kocher is the former President of
LIDS, a corporate partner for the past 8 years.
In 2016, LIDS will serve as the first national
title sponsor of the Step Forward to Cure TSC
program. Ken’s generosity has helped the TS
Alliance raise $12.5 million over the years.
Since the TS Alliance founded its Corporate
Advisory Board
in 2009, Ken
has served as
an advisor. Ken
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and his wife Beth are the
proud parents of three boys,
and his son Brandon lives
bravely with TSC.
This year’s event is
dedicated in loving memory to Dee Triemer
– a TSC mom, advocate, volunteer and
staff member who demonstrated that one
person can make an impactful difference.
A Special Family Weekend
Starting April 7, Universal Studios begin
celebrating the Grand Opening of its new
“The Wizarding World of Harry Potter”
attraction, making the weekend a great
getaway for your entire family. You can
spend Saturday and Sunday at Universal
Studios – or other area highlights – and
cap it off by attending Comedy for a Cure!
Limited rooms at reduced rates are available
Saturday and Sunday at the TS Alliance
host hotel, The Garland, just a trolley ride
away from Universal Studios.
For More Information
For event, ticket, or sponsorship information visit www.comedyforacure.org or
contact Ginger Williams, Director of Special
Events and Corporate Partnerships at 1-800225-6872 or [email protected].
May 21 2016: The 6th Annual Rock 4
Riley will be held from 7 to 11 p.m. at Woburn
Elks Lodge in Woburn, MA. This fun annual
event helps to increase awareness about
tuberous sclerosis complex (TSC) and raise
funds to benefit the TS Alliance. Riley is an
amazing and brave 9-year-old girl with TSC.
We rock for her and others like her who
struggle with tumors, seizures and other
devastating effects from TSC. The 2016
Rock 4 Riley will again feature live music
by Fast Times, great food, fabulous raffle
prizes, silent auctions
and a few surprises.
For more information
and to buy tickets, visit
www.Rock4Riley.com.
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801 Roeder Road, Suite 750
Silver Spring, MD 20910
Sunday, May 15, 2016
National Sylvan Theater
Washington Memorial Driveway SW
Washington, DC
10 am: Registration Check-In
11 am: Walk Begins
Join us on Sunday, May 15, 2016, as we celebrate TSC Global Awareness Day during the annual
LIDS Step Forward to Cure TSC National Walk on the Mall. On this day, thousands of individuals
and families affected by TSC will join together to increase public awareness of the rare disease
and share their stories of hope for the future.
Register today at www.StepForwardtoCureTSC.org.

PDF File - Tuberous Sclerosis Alliance

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