PDF File - Tuberous Sclerosis Alliance

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A MAGAZINE FROM THE TUBEROUS SCLEROSIS ALLIANCE
SUMMER 2015 | VOLUME 136
Remembering
Dee Triemer
Cover Story
PAGE 6
TS Alliance Honors
Volunteers and Community
Alliance of the Year
PAGE 8
TSC Clinics
“Up Close” — Israel
PAGE 14
Databases and
Registries: What Are
the Differences?
PAGE 18
A Call to Action:
You Can Help By
Participating in a
Research Study
PAGE 20
801 Roeder Road, Suite 750
Silver Spring, MD 20910 USA
(301) 562-9890 Toll-free: (800) 225-6872
Fax: (301) 562-9870
www.tsalliance.org
SUMMER 2015 • VOLUME 136
Message from the Leadership
Kari Luther Rosbeck
President and Chief Executive Officer
Jaye D. Isham
Kari Luther Rosbeck
Vice President, Communications Strategy
Managing Editor
Laura Lubbers, PhD
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.
President & CEO
Chair, TS Alliance Board of Directors
T
his issue’s cover story about our beloved Dee Triemer serves as a
reminder we can all make a difference in the battle against tuberous
sclerosis complex (TSC). The TS Alliance has just launched an online
journal tribute page to Dee at www.tsalliance.org/DeeTribute. You can
share your favorite memories, post pictures with Dee and join us in starting the page with your answer to: “I am grateful I knew Dee because . . .”
These pictures and memories will also help us create a photo montage
for next year’s Community Alliance of the Year Award, which will now be
called “The Dreamer Award” in Dee’s memory. We are all so very grateful
to Dee for impacting our lives, and we hope you will all share your tributes
on this new page.
Another way many of you have paid tribute to Dee is by participating in a
Spring event – Comedy for a Cure or a Step Forward to Cure TSC walkathon.
These events are crucial not only for fundraising but also for community
building and increasing awareness about TSC. Dee was a driving force behind
these initiatives and often shared, “I have the best job in the world because
I get to work with all of you.” This Fall, there will be more Step Forward to
Cure TSC walkathons, all dedicated to Dee, as well as two more readings
of our play, FOUR DECADES | ONE COMMUNITY, in Minneapolis, MN and
Washington, DC. You can find walk dates elsewhere in this issue or by visiting
www.StepForwardtoCureTSC.org. Visit www.tsalliance.org/4decades to
get information on the play.
Speaking of awareness, we hope you all know about the TS Alliance’s new
#IAMTSC awareness campaign that launched nationwide in early April. This
campaign features celebrities telling the personal stories of people with TSC
in public service announcements (PSAs). The PSAs are currently showing
on TV stations across the United States, and you can view them at www.
IAMTSC.org today. To further increase awareness of TSC and epilepsy, the
TS Alliance, in conjunction with the Child Neurology Foundation, will launch
a campaign to increase knowledge about infantile spasms. We will provide
more information about this exciting campaign as it becomes available.
Also this Fall, the TS Alliance and the Tuberous Sclerosis Association in
the United Kingdom are partnering to present the 2015 International TSC
Research Conference: From Treatment to Prevention from September 10-12
in Windsor, UK. This conference is critical to set the stage for clinical trials to
further our knowledge of treating TSC. To find out how you can participate
in current clinical trials, please see page 20.
Perspective is intended to provide basic information about tuberous sclerosis complex. It is not
intended to, nor does it, constitute medical or
other advice. The Tuberous Sclerosis Alliance (TS
Alliance) does not promote or recommend any
treatment, therapy, institution or health care plan.
Readers are warned not to take any action without
first consulting a physician. Commentary expressed
herein reflects the personal opinions of the author
and does not necessarily reflect the official views
of the TS Alliance. Information contained in the TS
Alliance database is confidential and not provided
nor sold to third parties.
Perspective is published quarterly by the National
Tuberous Sclerosis Association, Inc. d/b/a Tuberous
Sclerosis Alliance, a 501(c)(3), charitable organization.
©Copyright 2015 by the Tuberous Sclerosis Alliance.
All Rights reserved. Materials may not be reproduced
without written permission. Direct requests for reprint
permission to the managing editor.
Board of Directors
Laura Lubbers, PhD, Chair
David Fitzmaurice, Vice Chair
Rebecca Anhang Price, PhD, Secretary
Darren Miles, Treasurer
Keith Hall, Past Chair
Martina Bebin, MD, MPA
John Bissler, MD
Cassandra Carroll
April Cooper
Beth Dean
Rita DiDomenico
Steven Goldstein
Colleen Johns
Brendan Manning, PhD
Ted Mastroianni
David Michaels
Debora Moritz
Courtney O’Malley
David Parkes
Henry Shapiro
Elizabeth Thiele, MD, PhD
Endowment Fund Board of Directors
Michael Augustine, Chair
Doug Loftus, Secretary
Rita DiDomenico, Treasurer
James Achterhof
Steven Goldstein
David Michaels
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Special Events
For more than 13 years, the TSC
community, volunteers, sponsors, corporate
partners and advocates helped raise more
than $11.5 million through the Step Forward
to Cure Tuberous Sclerosis Complex®
movement. With your help we can be
heroes to everyone affected by TSC. By
joining a team, or walking as an individual,
you’ll receive the following Step Forward
Super Hero benefits:
• Hassle-free onsite registration
• Customizable fundraising page
• Step Forward to Cure TSC walk shirt
for raising $100 or more
• Online certificates/prizes for fundraising more than $500
• Recognition for top team/fundraiser
Sign up early, recruit friends and be
a part of this fabulous movement! Visit
www.StepForwardtoCureTSC.org today.
Nationally Sponsored by:
The Super Hero
Dollar$ Program
Location: Wantagh Park, Wantagh, NY
Event Chairs: Rob and Denise Spear,
[email protected]
The Super Hero Dollar$ program encourages participants to fundraise through fun
and team-oriented online activities while
earning recognition and prizes. For each
fundraising dollar raised, participants earn
one Super Hero Dollar$ that collectively can
be used to redeem prizes through an online
portal. Throughout the year, online activities
and team challenges are announced to
encourage participants to continue their
fundraising efforts and earn higher-level
prizes. Super Hero Dollar$ are an excellent
resource to kick start next year’s walk, thank
local sponsors and volunteers, or simply
boost your bragging rights on social media.
Visit www.stepforwardtocuretsc.org/prizes
to learn more.
Date: October 17, 2015
Location: Oak Ridge Park, Clark, NJ
Event Chair: Tresha Bisang,
[email protected]
TS Alliance of the Carolinas
Date: September 26, 2015
Location: Jarvis Creek Park, Hilton
Head Island, SC
Event Chair: Amy Bredeson,
[email protected]
Location: Miller Park, Shelter #1,
Winston-Salem, NC
Event Chair: Kasey Bragg,
[email protected]
Walk Chairs
TS Alliance of Houston
Location: MacGregor Park, Houston, TX
Event Chairs: Bill and Taska Fields,
[email protected]
The TS Alliance is sincerely grateful for
our volunteer walk chairs across the country
and the inspiring ways they interact with
the community through contributing their
never-ending abundance of energy, time,
and resources. We are excited to announce
three newly appointed Step Forward to Cure
TSC walk chairs for 2015! We look forward
to their contributions to the community and
thank them for “stepping” up to the challenge!
• Step Forward to Cure TSC Seattle –
Devon McCollum
• Step Forward to Cure TSC Western
Pennsylvania – Kelsey Hudson
• Step Forward to Cure TSC North
Carolina – Kasey Bragg
TS Alliance of the Pacific Northwest
Location: Warren G. Magnuson, Shelter
#3, Seattle, WA
Event Chair: Devon McCollum,
[email protected]
TS Alliance of Western Pennsylvania
Location: North Park Harmar Pavilion,
Allison, PA
Event Chair: Kelsey Hudson,
[email protected]
Step Forward to Cure TSC
Fall Schedule
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TS Alliance of New England
Location: Auburndale Park,
Auburndale, MA
Event Chair: Stacie Verrill,
[email protected]
TS Alliance of Tennessee
Location: H.W. Cox Park, Collierville,
TN 38017
Event Chair: Brittany Schwaigert,
[email protected]
TS Alliance of New York and
New Jersey
TS Alliance of the
Intermountain West
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Special Events
Location: Liberty Park,
Salt Lake City, UT
Event Chair: Alisa Lambros,
[email protected]
TS Alliance of St. Louis and
Southern Illinois
Location: Cliff Cave Park, St. Louis, MO
Event Chair: Gwen Montaigne,
[email protected]
Location: Gring’s Mill, Wyomissing, PA
Event Chair: Shelly Meitzler
Raised: $16,197
TS Alliance of Connecticut
Date: May 3, 2015
Location: Rotary Pavilion at Sand Hill/
Nevers Park, South Windsor, CT
Event Chair: Rebecca Thereault
Raised: $23,705
TS Alliance of Greater Kansas City
Location: Celebration Park, Gardner, KS
Event Chair: Planning Committee,
[email protected]
TS Alliance of the Dallas/Ft.
Worth Area
Date: May 9, 2015
Location: Frisco Commons Park, Frisco, TX
Event Chair: Joy Graydon
Raised: $54,903
TS Alliance of Florida
Date: November 14, 2015
Location: Florida International
University, MMC Campus, Miami, FL
Event Chair: Vanessa Vazquez,
[email protected]
TS Alliance of Wisconsin
Date: May 9, 2015
Location: Regner Park Centennial
Shelter, West Bend, WI
Event Chair: Kristin Champagne
Raised: $4,208
TS Alliance of Northern California
Date: November 7, 2015
Location: Heather Farm Park, Walnut
Creek, CA
Event Chair: Diane Burgis,
[email protected]
TS Alliance of Southern California
Date: May 16, 2015
Location: El Dorado Park East, Long
Beach, CA
Event Chair: Barbara O’Neill:
Dawn Redfield
Raised: $133,450
Spring 2015 Results
TS Alliance of Greater Chicago
Date: May 16, 2015
Location: Lake Storey Recreational
Area, Galesburg, IL
Event Chair: Karen Johnson-Wenger
Raised: $5,894
TS Alliance of Arizona
Date: April 18, 2015
Location: Eldorado Park, Scottsdale, AZ
Event Chair: Debora Moritz
Raised: $30,605
TS Alliance of Greater Alabama
Date: April 25, 2015
Location: Emmet O’Neal Library,
Mountain Brook, AL
Event Chairs: Carol Pitard and
Margaret Cox
Raised: $102,384
TS Alliance of Delaware/Lehigh Valley
Date: May 2, 2015
TS Alliance of the Delta Region
Date: May 23, 2014
Location: Parc Hardy Park, Breaux
Bridge, LA
Event Chair: Katie Christensen
Raised: $22,673
TS Alliance of DC Metro: National
Walk on the Mall
Date: June 6, 2015
Location: Constitution Gardnes,
Washington, DC
Event Chair: Brooke Carpenter
Raised: $93,990
TS Alliance of the Upper Midwest
Date: June 7, 2015
Location: Central Park – Jaycees
Shelter, Roseville, MN
Event Chairs: Jody Prudhomme and
Maria Gibbons
Raised: $47,941
TS Alliance of Ohio
Date: June 13, 2015
Location: Thomas A. Cloud Park, Huber
Heights, OH
Event Chair: Lola Centeno
Raised: $6,196
TS Alliance of the Rocky Mountain
Region
Date: June 13, 2015
Location: EB Rains Park, Northglenn,
CO
Event Chairs: Leslie Byers and Caroline
Clough
Raised: $16,554
Date: May 16, 2015
Location: Ty Warner Park and Pavilion,
Chicago, IL
Event Chair: Geri Greenberg
Raised: $72,961
TS Alliance of Michigan
Date: June 13, 2015
Location: Granger Meadows Park,
Lansing, MI
Event Chair(s): Treasa Dunlap
Raised: $12,691
TS Alliance of Indiana
Date: May 16, 2015
Location: Billericay Park, Fishers, IN
Event Chair: Pat Schmutte
Raised: $48,888
TS Alliance of Atlanta/North Georgia
Date: June 13, 2015
Location: Marietta Square, Marietta, GA
Event Chair(s): Reiko Donato
Raised: $40,158
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Government Relations Update
House Approves $6 Million
for TSC Research; Defense
Bills Advance in Congress
On June 9, 2015, the U.S. House of
Representatives approved the fiscal year
2016 Defense Appropriations Act. We are
pleased to report this legislation includes
$6 million in additional funding for the
Tuberous Sclerosis Complex Research
Program (TSCRP) at the Department
of Defense. This important achievement during a
challenging fiscal year would not have been
possible without the diligent advocacy efforts
of TSC families and friends. On March 4,
about 70 advocates traveled to Washington,
DC to participate in our annual “March on
Capitol Hill.” This herculean effort resulted
in 22 Senators and 117 Representatives
signing onto letters of support for the
TSCRP. Many other advocates who were
not able to travel to Washington, DC met
with their Senators and Representatives
back in their home states to make the case
for continued funding.
On June 11, the Senate Appropriations
Committee approved its version of the fiscal
year 2016 Defense Appropriations Act. While
the Senate does not include specific funding
levels for the TSCRP in its version of the
bill, it did include sufficient funding for the
overall defense health research programs
to move the process forward toward a final
House-Senate bill, which hopefully will be
finalized in the fall or winter this year.
June 17, in a speech on the floor of
the Senate, Senator McCain announced,
“I am aware of the outcry that has taken
place at these various organizations, which
are dedicated to improving the health of
Americans, and so therefore of course I
am not subjecting it to a vote.”
Patient Advocacy Groups
Push Back on McCain
Amendment
“21st Century Cures” Act
Approved by House
During the week of June 8, during
Senate debate on the National Defense
Authorization Act, Senator John McCain
(R-AZ) introduced an amendment that
would have significantly threatened future
funding for the TSCRP and other defense
health research programs. This amendment would have significantly narrowed
the eligibility of research funding to very
specific “military relevance” criteria.
The TS Alliance proudly joined a
coalition with dozens of patient advocacy
organizations, professional medical societies, health research advocacy groups, and
veterans’ organizations in a grassroots
campaign to help defeat the McCain
amendment. On June 10, the TS Alliance
and 65 other organizations signed a letter
to the Senate expressing opposition to the
amendment and strong support for the
defense health research programs. On
On July 10, the House approved
legislation to stimulate innovation in medical
research and advance new treatments and
cures for disorders like TSC. The “21st
Century Cures” Act establishes a new $9.3
billion “NIH and Cures Innovation Fund,”
which includes $1.75 billion annually in
new investments at the National Institutes
of Health and $110 million annually for
modernizing the drug approval process at
the Food and Drug Administration.
During debate on the bill, the TS Alliance
worked in coalition with other patient
advocacy groups to oppose amendments
that would have significantly weakened
the Innovation Fund. These amendments
were defeated and the bill was approved
and sent to the Senate. The Senate may
take up its own version of the legislation
as early as the Fall.
Message from the Leadership (continued)
As part of our commitment to the
global TSC community, staff members Kari
Luther Rosbeck and Katie Smith visited
associates from the TS Alliance of Israel
in April and met with community members
and physicians as well as visited the TSC
Clinics there. You can read more about
these activities on page 14.
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of our preclinical consortium to accelerate
the testing of potential new treatments
for TSC.
In closing, we salute everyone in the
TSC community for continuing to support
each other and the TS Alliance.
Finally, the TS Alliance is pleased
to announce some new staff members.
Rich Gollub, CPA, is our new Controller
and Chief Financial Officer and Cristina
Angel is our new Administrative Assistant.
Dani Brunner, PhD, also recently joined
the organization as a Senior Scientific
Advisor and will lead the implementation
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Remembering Dee Triemer
A Mom, Advocate, Staff Member, and Force of Nature
COVER STORY
“On March 15, 2002, my world grew larger, my eyes opened wider, and now
every day I try to make a difference. I want Ashley and my other children to
be proud. I didn’t shrink and cry. I did something. That was my strength – my
way of controlling what can’t be controlled.” – Dee Triemer
B
eloved friend and TS Alliance
s t af f m e m b e r D e e Tr i e m e r
passed away Tuesday, May 19,
at her home. Dee was diagnosed with
stage 4 cancer earlier this year. While
there are no words to fully express
everyone’s deep grief, Dee certainly
made a profound impact not only in the
TSC community but anyone whose life
she touched. And that’s a reason to
celebrate.
“Dee was a TSC mom like me, and also
worked for the TS Alliance. Her passion
to support TSC families and individuals
and her ability to rally many people,
from neighbors to celebrities to help
us make TSC a household name
and raise funds for research and
support programs offered by the TS
Alliance, will be deeply missed,” said
Reiko Donato.
TS Alliance President and CEO
Kari Luther Rosbeck met Dee 13
years ago. “On the day of her daughter
Ashley’s diagnosis, Dee called me
ready to take action. In true ‘Dee
fashion,’ she had a to-do list ready
to go, focused on what she could
Reiko Donato with Dee.
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Kari and Dee.
do to make a difference. Dee lived a life
of service to others, always working to
make a positive change for Ashley and
the entire TSC community. Of course, she
is tremendously missed and her tenacity,
fortitude, compassion and commitment will
be guiding forces for me and the staff.”
As many know, Dee was nuts about
shoes, especially ones with heels. On
the day of her memorial, Facebook was
awash in pictures of shoes and anecdotes
as a way to remember her.
“At last summer’s TSC World Conference,
Dee fell in love with these shoes of mine,”
remembers Janie Frost. “I could not wear
them for any longer than 30 minutes at a
time. Dee noticed that and snuck out with
them, leaving hers behind! She told me
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Janie’s Shoes
“Dee was, and remains, a beacon of light and
inspiration for the TSC community. Your immense
contributions cannot be easily measured. We and
your entire circle of family and friends will always
and forever cherish your memory.”
that she would relieve me of them when
I could only wear them . . . 10 minutes
at a time! I will miss you Dee Carpenter
Triemer, and wish you had these shoes!”
Dee was born November 1, 1965 in
Kinsport, Tennessee to Barry and Sharon
Carpenter. She received a Bachelor of
Business Administration from Kennesaw
State University in 1991. She met her
future husband, Michael Triemer, in Tampa,
Florida where she worked as the Director
of Human Resources for AT&T Atlantic. In 2002 they relocated to the Atlanta
area with their four children shortly after
their daughter, Ashley, was diagnosed
with tuberous sclerosis complex. Dee
quickly became a dedicated advocate for
her daughter and others with TSC. She
established the TS Alliance chapter in
Tampa before moving to Georgia where
she helped organize its first Step Forward
to Cure TSC walkathon in 2003.
TS Alliance founder Adrianne Cohen and Dee.
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Dee working the
live auction at
the TS Alliance
40th Anniversary
Celebration.
“Dee was, and remains, a beacon of
light and inspiration for the TSC community.
Your immense contributions cannot be
easily measured. We and your entire
circle of family and friends will always
and forever cherish your memory,” said
Keith Hall, former TS Alliance Board Chair.
After filling numerous volunteer roles
with the TS Alliance and being named a
2007 Volunteer of the Year, Dee
joined the TS Alliance staff in
2008 as Community Outreach
Manager. She was later named
Director of Special Events and
Corporate Partnerships, leading
the TS Alliance’s special event
and communit y fundraising
efforts. She oversaw the national
Step Forward to Cure TSC program, which raised millions during
her tenure. Dee also directed the
TS Alliance’s signature event,
Comedy for a Cure®.
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She was a member of the Hamilton
Mill United Methodist Church where
she helped create their special needs
program. Dee is survived by her parents
Barry and Sharon Carpenter, her older
brother Jerr y Carpenter, her former
spouse Michael Triemer, and their four
children – Christopher, 18, Jeffrey, 17,
Ethan, 14, and Ashley, 13, along with
numerous loving grandparents, aunts,
cousins, nieces, nephews and friends.
In May, the TS Alliance Board of
Directors established the Dee Triemer
Memorial Fund to honor and pay tribute in
a meaningful way to Dee and to ensure her
legacy, tireless efforts and achievements
live on. Dee truly demonstrated that one
person can make an impactful difference
– as a mother, a volunteer, an advocate
and a staff member. She literally touched
thousands of lives. You can make an
online gift to the memorial fund at www.
tsalliance.org/TriemerMemorialFund.
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TS Alliance Honors Volunteers and
Community Alliance of the Year
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an impressive five nominations. David
raises awareness for TSC on behalf of
his stepdaughter, Hannah, through his
racing at the Stafford Motor Speedway
in Stafford, CT. With the TS Alliance logo
proudly emblazoned on his car’s hood, he
takes every chance he gets to draw the
attention to the fight
against TSC.
Left to right: Kari Luther Rosbeck, Heather Lens, Kristin Frausto,
David Comeau, Geri Greenberg, Laura Lubbers
Since becoming chair of the TS
Alliance of Greater
Chicago in 2012,
Geri Greenberg has
jumped head first
into the fight against
TSC. Through social
gatherings, educational meetings,
and walk support,
Geri gives her all
to support to her
grandson, Derrick,
and her local TSC
he 2014 Volunteer of the Year
and Community Alliance of the
Year awards were presented at
the Volunteer Appreciation Dinner in
Washington, DC on March 5, 2015.
2014 Volunteer of the Year recipient
Heather Lens was nominated by three
individuals because of her passion for TSC
awareness ignited by her daughter’s TSC
diagnosis at 5 months old. As a leader in
the start to the TS Alliance of Oklahoma,
she has hosted both social and fundraising
events and has big plans for her local TSC
community.
Kristin Frausto – Co-Chair of the TS
Alliance of Southern California, Clinic
Ambassador, registered nurse, student, and
mother to two-year-old Evan – has proven
herself a valiant fighter in the battle against
TSC. Through Evan’s diagnosis, Kristin has
become an advocate for TSC awareness
who will not give up on our mission to find
a cure for TSC while improving the lives
of those affected.
Race car driver David Comeau received
a 2014 Volunteer of the Year award after
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community. A well-deserved winner of a
2014 Volunteer of the Year award, Geri
continues her fight to bring awareness to
TSC and offer support to those affected.
Thank you to all of those who nominated
and drew attention to the incredible work
being done by these advocates. We look
forward to their continued work on behalf of
the TS Alliance and the TSC communities
across the country.
In addition to the Volunteer of the
Year awards, the Community Alliance of
the Year award was presented to the TS
Alliance of Greater Chicago. Led by Chair
Geri Greenberg, the TS Alliance of Greater
Chicago is an incredible resource to local
TSC individuals and families through the
hosting of educational meetings, social
gatherings, and annual fundraisers.
Don’t forget to take notice of the local
TSC heroes in your community. Nominations
for the 2015 Volunteers and Community
Alliance of the Year award will begin in
the fall of 2015.
Left to right: Kari Luther Rosbeck, Dena Hook, Geri Greenberg, Laura Lubbers.
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TS Alliance Endowment Fund:
A Donation Option With Double the Tax Benefits
M
any of your investments are
likely still worth more today
than what you originally paid
for them. And if you sell, you would pay
capital gains taxes at a maximum rate
of 20 percent. But by using appreciated
securities you’ve owned for more than
one year as a charitable gift, you will
receive two tax benefits:
1. You are entitled to a federal income
tax deduction based on the current
fair market value of the securities,
regardless of their lower original
cost.
2. You will be exempt from paying
capital gains taxes on any increase
Case Study
in value—taxes you would pay if you
were to sell the securities.
Cash vs. Stock:
Which Gets More Bang
for Your Buck?
How to Make a Gift of Stock
If you have the physical securities:
• hand deliver them to the TS Alliance
offices; or
• mail the stocks and stock power
separately.
Throughout her working years, Kim
saved and invested diligently to prepare
for retirement. Now that she is retired,
she is ready to diversify her portfolio and
wants to use $100,000 in stock (which
she originally purchased for $60,000,
resulting in a $40,000 gain) to fund a
gift to the TS Alliance Endowment Fund.
Look at the chart below to see how Kim
will benefit from giving her stock directly
to us as opposed to selling it and donating
the proceeds.
If you don’t have possession of the physical
securities:
• instruct your broker to electronically
transfer your intended shares; and
• ask your broker to notify the TS
Alliance Endowment Fund once the
transfer is complete.
Maximizing Tax Savings With a Gift of Appreciated Stock
Kim’s Gift Options
Gift of Cash
Gift of Stock
Value of Gift
$100,000
$100,000
Kim’s income tax savings ($100,000 x 28% tax bracket)
-$28,000
-$28,000
$0
-$6,000
$72,000
$66,000
Capital gains tax savings ($40,000 x 15%)1
After-tax cost of Kim’s gift
Kim’s gift of stock delivers significant tax advantages over a cash donation, allowing her to support the TS Alliance Endowment
Fund at a lower after-tax cost to her. In both scenarios, the Endowment Fund receives $100,000.
1$60,000 cost basis
Let Us Help
To learn more, contact Lisa Moss,
Director of Donor Relations, at 301.562.9890
or 800.225.6872 or lmoss@tsalliance.
org. Together with your advisor, we can
help you fulfill your charitable goals while
avoiding worries over tax consequences
or market conditions.
© The Stelter Company
The information in this publication is not intended as legal or tax advice. For such
advice, please consult an attorney or tax advisor. Figures cited in examples are
for hypothetical purposes only and are subject to change. References to estate
and income taxes include federal taxes only. State income/estate taxes or state
law may impact your results.
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Honorariums (January 2015 – May 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, call Tye Hoffman at (240) 638 4643 or by email at [email protected].
Tribute(s) for Adam Abad
Ms. Olga M. Martinez
Tribute(s) for Rebecca
Anhang Price
Mr. Ethan Levisohn
Tribute(s) for Jacob Baker
Shiloh Fire Department Auxiliary
Tribute(s) for Vincent
Bassano
Mr. and Mrs. Vincent Bassano
Mr. John Clemente
Tribute(s) for Maggie
Beaton
Ms. Patricia Coffin
Tribute(s) for John R.
Beattie
Mr. John G. Hazlett
Tribute(s) for Thomas W.
Beattie
Mrs. Mary E. Dougherty
Tribute(s) for Martin Becker
Mr. and Mrs. Edward Winkler
Tribute(s) for Taylor
Bedini
Ms. Peg Byron
Tribute(s) for Edith L.
Bernstein
Mr. Nathaniel Duberstein
Tribute(s) for Layne
Boesiger
Mr. Philip Livengood
YourCause, LLC
Tribute(s) for Elizabeth
Boussie
Mr. and Ms. Martin McGladdery
Tribute(s) for Chloe
Bredeson
Beaufort County Schools
Tribute(s) for Anthony
Brewer
Mr. and Mrs. Gustavo Baumzweig
Mr. and Mrs. Richard A. Burten
Ms. Gisely Cabrera
Mr. and Mrs. Gregory Carbone
Ms. Jennifer Ceglecki
Ms. Maureen C. Covone
Empire Agency, LLC
Mr. David W. Harnett
Mad World of Fitness, Inc.
Mr. and Mrs. Mike McGarry
Ms. Marie Murray
Mr. and Mr. Christopher
Papadopoulos
Mr. and Mrs. William Sanchez
Ms. Marlene Wolfe
Tribute(s) for Victor
Brown
Anonymous
Tribute(s) for Matty
Campbell
Mr. Joel Beckerman
Brooks Sports, Inc.
Mr. and Mrs. Donald R. Brown
Mr. and Mrs. James G. Burkhart
Mr. and Mrs. Robert L. Busby
Ms. Rita K. Campbell
10
Carmel Dad’s Club, Inc.
Christ the King School
Mr. and Mrs. Steven A. Cobb
Mr. Richard Collins
Mr. and Mrs. G Terrence Crowley
Ms. Mary Cunningham
Mrs. Elizabeth Curtis
Ms. Dorothy Davis
Mr. and Mrs. Michael G. Garrison
Mr. and Mrs. Worth Hartman
Mr. and Mr. Paul Hegarty
Mr. and Mrs. James S. Howie
Mr. and Mrs. Todd H. Irwin
Mr. Bernard P. Kavanagh
Mr. and Mrs. Thomas C. Kessler
Mr. and Mrs. Robert V. Kixmiller
Ms. Lynn Larsen
Mrs. Collette Leichtnam
Mr. and Mrs. Joseph A.
Magyar, Jr.
Mr. and Mrs. William F. Marshall
Mr. and Mrs. Robert Mayer
Mr. and Mrs. Martin Moorman
Mr. Steven Otte
Mr. and Mrs. Dino Sarpa
Mr. and Mrs. William R. Schnell
Ms. Marilyn Siner
Mr. and Mrs. Randy Sorensen
Dr. and Mrs. Dirk A. Sterley
Mr. Michael Williams
Tribute(s) for Nathan P.
Carroll
Mr. and Mrs. John R. Carlson
Tribute(s) for Faith
Chadderdon
Women of the Moose
Tribute(s) for Elliot C.
Cohen
Ms. Roberta Addis
Tribute(s) for Tommy Cox
Ms. Jody Knudsen
Tribute(s) for Keenan J.
Creamer
Booster
The GE Foundation
Tribute(s) for Eleanor
Crystal
Mr. and Mrs. Marc Cohen
Tribute(s) for Hannah
D’Amours
Mr. and Mrs. Andre D’Amours
Tribute(s) for Callie
Darnell
Mr. and Mrs. David J. Redd
Tribute(s) for Andrew
J. Deller
Ms. Sandra Demmitt
Microsoft Matching Gifts
Program
Tribute(s) for Jacob E.
Dickison
Mr. and Mrs. John G. Torkelson
Tribute(s) for Nicholas
Domzalski
Mr. and Mrs. Raymond
Domzalski
Tribute(s) for Alexandra
Donato
Lawrence Smith Foundation
Tribute(s) for Jeremy Elias
Michael Bill Avner Memorial
Fund/The Pittsburgh
Foundation
Tribute(s) for AJ Falbo
Mr. Richard W. Jackson
Tribute(s) for Ashley Falbo
Mr. Richard W. Jackson
Falbo
Mrs. Kimberly Grove
Tribute(s) for Gabe Foley
Mr. and Mrs. John M. Foley
Tribute(s) for Jameson
R. Fox
Mrs. Michaela E. Essling Wehr
Tribute(s) for Kelley
D. Fox
Mr. and Mrs. William Fox
Tribute(s) for Barry
Friedman
Mr. and Mrs. Michael Parkes
Tribute(s) for Fran
Friedman
Tribute(s) for Gerald
Friedman
Mrs. Ina Goldstein
Tribute(s) for Luke Grandia
Mr. and Mrs. Marvin De Boef
Tribute(s) for Deanne
J. Guy
Pleasant Valley United Methodist
Church
Tribute(s) for Anna
Hathaway
Mrs. Sharon L. Hathaway
Tribute(s) for Chris A.
Hawkey
Mrs. Cheri L. Block
Tribute(s) for Arthur
Hightower
Jacksonville Country Day School
Tribute(s) for Mathew
Hillier
Ms. Patricia A. Gabriele
Tribute(s) for Dana M.
Holinka
Mr. and Mrs. David A. Krinsky
Tribute(s) for Emily M.
Holinka
Independent Rebuild Specialist,
LLC
Tribute(s) for Carly
Holotka
Mr. Joseph S. Holotka
Tribute(s) for Kevin
Jackson
Mrs. and Mr. Judith Abrams
Mr. and Mrs. Ron Wiener
Tribute(s) for Annie
Johnson
Mr. and Mrs. Craig Bachouros
P ER SP ECT I V E
•
Mr. and Mrs. William E. Braunlich
Mr. and Mrs. Edmund P. Crump
Ms. Shirley Harjes
Mr. and Mrs. Roger Kiper
Mr. and Mrs. Stanley G. Miller
Mr. and Mrs. David W. Modjeski
Mr. and Mrs. William T. Redgate II
Ms. Martha S. Reese
Mr. and Mrs. William J. Umphred
Mr. and Mrs. Lawrence H.
Weinberg
Tribute(s) for Kendall Kesig
Mr. and Mrs. Tomasean Swisher
Tribute(s) for Brandon
Kocher
Mr. and Mrs. Charles Brodt
Tribute(s) for Dale W.
Kocher
Mr. Suneet Bhatt
Tribute(s) for Jackson
Kozisek
Mr. John B. Matthew
Tribute(s) for Allison L.
Kramer
Mr. and Mrs. Scott R. Keating
Tribute(s) for Lauren E.
Krinsky
Mr. and Mrs. Michael N. Meredith
Ms. Donna Peterson
Tribute(s) for Hannah
LaForte
Ms. Sandra Arky
Mr. and Mrs. Edmund Barrett
Mrs. Teddi Berkowitz
Mr. and Mrs. Robert Klein
Mr. and Mrs. N. Murray Kotler
Mrs. Nancy Malamet
Mr. and Mrs. Jerry Matez
Mr. and Mrs. Richard Segal
Mrs. Sandra Solomon
Tribute(s) for Stephen
Laib
Mr. and Mrs. Ronald L. Laib
Tribute(s) for Brianna
LaVoun
Ms. Marie Radigan
Tribute(s) for Taylor
Ledford
Mr. and Mrs. John McFadden
Tribute(s) for Emma
J. Leist
Stewart Title Company
Tribute(s) for Madelyn
Lens
Booster
Tribute(s) for Louis
Letendre
Ms. Deborah S. Fischer
Tribute(s) for David C.
Light
Tribute(s) for Jill A. Light
F. Lyons
Mr. George Snedeker
S U M M E R
2 0 1 5
•
A
Tribute(s) for Brody Marlin
Mr. Philip O. Katz and Ms. Leilani
Eveland
Mr. Kenneth Quickel
Tribute(s) for Arlene J.
Marszalowicz
Mr. Alex Marszalowicz
Tribute(s) for Carina
Marton
Carol Marton
Tribute(s) for Carol
Marton
Ms. Jill Stier
Tribute(s) for Herbert
Marton
Mr. and Mrs. David Selick
Ms. Jill Stier
Tribute(s) for Stuart Marton
Carol Marton
Tribute(s) for Gia Mason
Ms. Joan Delcampo
Tribute(s) for Joshua
Michael
Mrs. Carol Michael
Tribute(s) for William
Nasser
Ms. Tammy Kirksey
Tribute(s) for Lauren
Niemeyer
Ms. Kris Niemeyer*
Tribute(s) for Carson
O’Brien
Mrs. Nancy Boothe
Mr. and Mrs. Anthony Captline
Dr. Shelly Dicesaro
Mr. and Mrs. Gary Gegick
Mr. Rothman Gordon
Ms. Suzanne Korkus
Mrs. Carol Obrien
Mr. George Pawluk
Mr. Jamison P. Roth
Mrs. Lauren Stopperich
Mrs. Sandra Yakovich
Ms. Kimberly Zytnick
Tribute(s) for Felipe
Pancorvo
Mr. Pablo Burbridge
Tribute(s) for David W.
Parkes
Tribute(s) for Eric Parkes
Mrs. Ina Goldstein
Tribute(s) for Jerome
Parkes
Tribute(s) for Penney M.
Parkes
Tribute(s) for Karina
Partida
Ms. Laurie Ahumada
Mr. and Mrs. William G. Brown
Mr. and Mrs. Guy Digiacomo
Ms. Darby K. Downs
Mr. and Mrs. Mark A. Molthan
Mr. and Mrs. Douglas Nelson
M a g a z i n e
fr o m
Mr. and Mrs. John J. Sullivan
Mr. and Mrs. David Wear
Tribute(s) for Bill Pfeiffer
Mrs. Kay Peters
Tribute(s) for Paige
Pfeiffer
Mr. and Mrs. Bill Pfeiffer
Tribute(s) for Elena R.
Quintana
Mrs. Ursa Brown
Mr. Nicholas Friend
Mr. John Lissoway
Mr. and Mrs. David Quintana
Mrs. Robin Quintana-Ramirez
Mr. Sammy Quintana-Ward
Ms. Marisa Roddy
Tribute(s) for Sarah
Quintana
Mr. Constance D. Ryder
Tribute(s) for Anthony
Rasavage
Mr. and Ms. Mark Rasavage
Tribute(s) for Tony
Rasavage
Mr. and Ms. Mark Rasavage
Tribute(s) for Joel Ratner
Mr. and Mrs. Philip Molstre
Tribute(s) for Martha
Ratner
Mr. and Mrs. Edmund Barrett
Mrs. Teddi Berkowitz
Ms. Lynn Borislow
Mr. and Mrs. Robert Klein
Mr. and Mrs. N. Murray Kotler
Mrs. Nancy Malamet
Mr. and Mrs. Philip Molstre
Mr. and Mrs. Richard Segal
Mrs. Sandra Solomon
Tribute(s) for Allyson
Rhodes
Mr. and Mrs. Raymond A.
Peterson
Tribute(s) for Karley
Rhodes
Mr. and Mrs. Raymond A.
Peterson
Tribute(s) for Sidney Rouse
Mrs. Carol Rouse
Tribute(s) for Christian
I. Santos
Ms. Sylvia M. Sparby
Tribute(s) for Madalyn
Scherer
Mr. and Mrs. Joseph D. Garvey
Tribute(s) for Brenna
L. Scott
Mr. and Mrs. Douglas Scott
Tribute(s) for Nicole M.
Seefeldt
Mr. and Mrs. Marshall Seefeldt
Tribute(s) for Benjamin
Shapiro
Mr. and Mrs. Richard Martin
Tribute(s) for Joshua
B. Sims
Ms. J Michelle Funk
th e
Tu be ro us
Tribute(s) for Samantha
Sinclair
Mr. and Mrs. Bob Sinclair
Tribute(s) for Samantha
Smith
Mr. Frank Stovall
Tribute(s) for Lillian R.
Solise
Mr. and Mrs. Alexander Jamieson
Tribute(s) for Cuay Steele
A Cure for Cuay
Tribute(s) for Mason
Tebbetts
Mrs. Tara Cole
Mrs. Kelly Trisler
Tribute(s) for Benjamin
Theis
Mr. and Mrs. James Markfort
Tribute(s) for Andrew R.
Trundle
Mr. and Mrs. Michael R. Trundle
YourCause, LLC
Tribute(s) for Isabella
Vigil
Ms. Patrilla Vigil
Tribute(s) for Riley Vogel
Ms. Dorothy Farley
Tribute(s) for Will
Wasserman
Mr. and Mrs. Robert Pleshaw
Tribute(s) for Landry
Watson
Lindsey Tanaka
Tribute(s) for Yoda
Wegner
Mr. and Mrs. Warren Wegner
Tribute(s) for Addilyn
Wenger
Ms. Kay Wenger
Tribute(s) for Ilana Wiesel
Mr. and Mrs. Nachum Wiesel
Tribute(s) for Tyler Wooer
Mr. and Mrs. Stephen Maassen
Tribute(s) for Ben
Yeamans
Ms. Roberta Darrow
Ms. Barbara Lauer
Mrs. Sara Maxwell
Tribute(s) for Katelyn
Yeamans
Ms. Roberta Darrow
Ms. Barbara Lauer
Mrs. Sara Maxwell
Tribute(s) for Alyssa
Youmans
PASCO
Tribute(s) for Kyle
Zebrowski
Mr. and Mrs. Eugene Zebrowski
*Apologies to Kris Niemeyer
whose Honorium gift was
mistakenly listed as a Memorial
gift in the last issue of this
magazine.
S c l e ro s i s
Alliance
Memorials (January 2015 –May 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 Mary Arnold
Ms. Marsha M. Flaige
Tribute(s) for Judy Artz
Dr. Raymond W. Chan
Tribute(s) for Dulla
Athenais
Mr. and Mrs. Daniel P. Barrows
Tribute(s) for Sean Baird
Mrs. Linda Baird
Tribute(s) for Earnest
Balken
Mr. and Mrs. Gary L. Flatin
Tribute(s) for Andrew
Barnes
Ms. Suz Biwer
Mrs. Nancy Fehrenbach
Mrs. Kristin H. Fewel
Mr. and Mrs. Thomas Kirchen
Kiwanis Club of Wauwatosa
Mr. and Mrs. Robert W. Reinhardt
Mr. and Mrs. Jeffrey P. Schwab
Tribute(s) for Doris
Bologna
Mr. James L. Bobo
Connecticut Energy Marketers
Association
Ms. Carol Hensch
Mr. and Mrs. Paul Juliano
Mr. Myron Sklar
Mr. Andrew Summa
Mr. and Mrs. Joseph V. Vittoria
Tribute(s) for Alan
Buchsbaum
Mr. Peter Ostrow
Mr. Irwin Rosenthal
Tribute(s) for Brandon C.
Cherebin
Mr. and Mrs. Cesar Cherebin
Tribute(s) for Ronda
Cohen
Tribute(s) for Matthew
Colby
Hope Help Heal Foundation, Inc.
Tribute(s) for Donald
Denton
Mr. John Coolidge
Tribute(s) for Justin
Dorsey
Mr. and Mrs. George Conlon
Ms. Erin Kash
Ms. Kellyann Kash
Mrs. Maureen Kash
Mr. and Mrs. David Kenna
Mr. Richard Kenna
Ms. Sharon A. Kenna
Mr. and Mrs. Paul Miller
Mr. and Mrs. Robert Spear
Mr. and Mrs. Charles Waltemire
Christine Warchal
Tribute(s) for Joseph
Elbogen
Ms. Rita Sobel
Tribute(s) for Heidi Erb
Mr. and Mrs. Robert E. Gendreau
Tribute(s) for Lois
Farnsworth
Mr. and Mrs. Stephen M. Collins
Mr. and Mrs. David Gray
Ms. Marisa Serafini
Mr. and Mrs. G Stevens
A
M a g a z i n e
f r o m
Mrs. Catherine F. Vermillion
Tribute(s) for Michael
Ford
Mr. and Mrs. Paul W. King
Tribute(s) for Mary
Foscato
Orange County Cruisers, Inc.
Tribute(s) for Tiara Goff
Todd Aldrich
Mr. and Mrs. Paul Altieri
Anonymous
Mr. and Mrs. Adam Antoyan
Mrs. Linda Baird
Mrs. Corey Bakkila
Elke Barras
Mr. Robert R. Black
Vivian M. Browne
Mrs. Julie Castillo
Mrs. Lynnette S. Caughill
Mr. and Ms. Alfred Cooper
Ms. Carrie L. D’Ippolito
Mrs. Kingsley Echlin
Mrs. Anna Fitzpatrick
Merideth Fleener
Ms. Nicole Foster
Mrs. Happy Garacochea
Mr. Richard B. Glendinning, Jr.
Ms. Tracy Hartman
Ms. Sue Harvey
Mrs. Stacy L. Healy
Shelley Hoff
Ms. Samantha Howard
Mr. and Mrs. Matt Jorski
Ms. Karen Keith
Ms. Elizabeth Kelder
Mr. and Mrs. Joe Krischel
Ms. Trisha Leerssen
Ms. Lisa P. Lindelef
Mrs. Stacy Liolios
Mr. and Mrs. Rudy Loewenstein
Mr. and Mrs. James J. Maginn
Dr. Sarah Mathias
Ms. Lisa Mathies
Mr. and Mrs. Mark Mayrsohn
Kammie McArthur
Mrs. Holly McMullen
Mrs. Kammy Miller
Mr. and Mrs. John Million
Mr. Mark Mitchell
Mrs. Sara Mix
Mr. and Mrs. Mitch Munt
Mrs. Michelle Nguyen
Ms. Francesca Peck
Mr. John F. Porrello
Mr. and Mrs. Chris Pullis
Mr. and Mrs. Roger Pullis
Ms. Ashley Rangel
Ms. Sharon Reuling
Ms. Dawn Ringo
Mr. and Mrs. Patrick J. Rolfes
Mr. and Mrs. Christopher Rosbeck
Mrs. Leslie B. Ryan
Ms. Michele J. Rydel
Ms. Meg Sawa
Mr. and Mrs. Chris Schwartz
Mr. Henry P. Shapiro and Ms.
Christy Hobart
Ms. Cynthia W. Sladics
Mr. and Mrs. Jeffrey K. Sunahara
Mr. and Mrs. Howard Taekman
t h e
Tu b e r o u s
Mrs. Devon Thomas
Ms. Diane Valeriano
Mrs. Leslie F. Vandale
Mrs. Karen R. Whitaker
Ms. Chantelle Wolfe
Dr. Joyce Wu
Ms. Sue Yudovin, RN, MN
Tribute(s) for Lawrence
Greene
Mr. Joel Beckerman
Mr. and Mrs. William F. Berens
Brooks Sports, Inc.
Mr. and Mrs. Donald R. Brown
Mr. and Mrs. James G. Burkhart
Mr. and Mrs. Robert L. Busby
Ms. Rita K. Campbell
Carmel Dad’s Club, Inc.
Christ the King School
Mr. and Mrs. Steven A. Cobb
Mr. Richard Collins
Mr. and Mrs. G Terrence Crowley
Ms. Mary Cunningham
Mrs. Elizabeth Curtis
Ms. Dorothy Davis
Dr. and Mrs. Logan Desautels
Ms. Judith Ernst
Mr. and Mrs. Michael G. Garrison
Mrs. Nancy Gill
Ms. A. Lestine Grady
Mr. and Mrs. Worth Hartman
Mr. and Mr. Paul Hegarty
Mr. and Mrs. Loran Hill
Mr. and Mrs. James S. Howie
Mr. and Mrs. Todd H. Irwin
Mr. Bernard P. Kavanagh
Mr. and Mrs. Thomas C. Kessler
Mr. and Mrs. Robert V. Kixmiller
Mrs. Collette Leichtnam
Mr. and Mrs. Joseph A.
Magyar, Jr.
Mr. and Mrs. William F. Marshall
Mr. and Mrs. Robert Mayer
Mr. and Mrs. Martin Moorman
Mr. Steven Otte
Mr. and Mrs. Dino Sarpa
Mr. and Mrs. William R. Schnell
Ms. Marilyn Siner
Mr. and Mrs. Randy Sorensen
Dr. and Mrs. Dirk A. Sterley
Mr. and Mrs. Denny Tracy
Mr. Joel Tragesser
Mr. and Mrs. Thomas A. Walsh
Mr. and Mrs. Stephen Wheeler
Mr. Michael Williams
Mr. and Mrs. John Woodruff
Tribute(s) for Margo
Hamm
Mr. and Mrs. Lee Kjeldsen
West Chicago Garden Club
Tribute(s) for Anne
Heilman
Dr. and Mrs. Jonathon Schwab
Tribute(s) for Joey
Holubowicz
Mr. and Mrs. Dan Field
Tribute(s) for Lori Ann
Johnson
Mrs. Shirley K. Brooks
Tribute(s) for David
Kassakoff
Mr. and Mrs. Donald Schiff
S c l e r o s i s
Tribute(s) for Marianne
Kreiger
Mr. Kenneth Quickel
Mr. and Mrs. Thomas Wynn
Tribute(s) for Marilyn
Kruger
Mr. and Mrs. Joe Krischel
Tribute(s) for Thomas
Loftus
Mr. and Mrs. Timothy Johnson
Tribute(s) for William J.
Malesky
Mr. and Mrs. William J. Malesky
Tribute(s) for Marjori
Marton
Mr. and Mrs. Myron Rapaport
Tribute(s) for Brenda
McDonald
Mr. and Mrs. Charles Cunbow
Tribute(s) for Kenneth J.
Meade
Ms. Karen A. Bandosz
Mr. and Mrs. Vincent Bassano
Ms. Barbara Borinsky
Mr. John Clemente
Mr. and Mrs. Robert D. Conners
Mr. Thomas Destefano
Ms. Ida DiClemente
Mr. and Mrs. Vinny DiSpigno
Ms. Lorna Garafalo
Ms. Rachel LeGrady
Prudential Foundation Matching
Gifts
Ms. Marie Roeder
Mr. and Mrs. Robert Taormina
Mr. and Mrs. James Zawistowski
Tribute(s) for Mike
Olavarri
Mr. and Mrs. Edward Escobar
Mr. and Mrs. Kenneth Escobar
Tribute(s) for Janet Olson
Ms. Debi Iaquinto
Thomson Reuters
Tribute(s) for John
Parisher
Mr. and Mrs. Raul Barrera
Mr. and Mr. Lyndon Johanson
K Jordan Enterprises, Inc.
Mrs. Marci Kwan
Mr. Earl Milam
Mark Pratt
Mr. Bob Turner
Tribute(s) for Bud Peck
Medical Imaging Northwest
Tribute(s) for Drake
Perez-Morin
Holy Ghost Catholic Church
Tribute(s) for Edward A.
Rauchut
Ms. Ilga Rauchut
Tribute(s) for Theo
Regello
Mr. and Mrs. John Haruff
Mr. and Mrs. Robert Hesik
Mr. and Mrs. Bert Kadan
Mr. Vincent Vargas
Tribute(s) for Henrietta
Rose
Mr. and Mrs. Marvin Altenburg
Mr. Ralph Bidwell
Mr. and Mrs. Daniel Cottrell
A l l i a n c e
•
S U M M E R
Mr. Bill Johnson
Mr. and Mrs. Marcel Killingbeck
Mr. and Mrs. Mark Kloechner
Mr. and Mrs. Robert Loomer
Mr. Joseph Noll
Mr. Dennis W. Panars
Mr. and Mrs. John A. Panars
Mr. and Mrs. Bill Parsell
Mr. Leonard Rose
Mr. and Mrs. Richard Smetanka
Ms. Lisa Stemple
Mr. and Mrs. Mike Strace
Mr. and Mrs. Lawrence Vissotski
Mr. and Mrs. Ed Wenzel
Tribute(s) for Terrence
K. Scott
Mr. Thomas Archibald
Ms. Geraldine T. Barton
Mrs. Donna Conti
Ms. Karen Febeo
Mr. John Morris
Ms. Kristen Olsen
Mr. Daryl Wiesen
Tribute(s) for Jean
Sinclair
Ms. Marguerita DiMattia
Mrs. Stephanie Dorrell
Mr. and Mrs. Edward M. Seavers
Tribute(s) for Regina
Sinclair
Mr. Ralph D. Dills
Mr. and Mrs. Robert Sinclair
Ms. Marguerite B. Stathes
Tribute(s) for Barbara A.
Stopperich
Mrs. Nancy Boothe
Mr. and Mrs. Anthony Captline
Dr. Shelly Dicesaro
Mr. and Mrs. Gary Gegick
Mr. Rothman Gordon
Ms. Suzanne Korkus
Ms. Joan McMahon
Mrs. Carol Obrien
Mr. George Pawluk
Mr. Jamison P. Roth
Mrs. Lauren Stopperich
Mrs. Sandra Yakovich
Ms. Kimberly Zytnick
Tribute(s) for Gilda Strom
Mr. and Mrs. Michael Elefante
Tribute(s) for Hallie
Testerman
Mr. James Bender
Mrs. Daaiyah Bilal-Threats
Ms. Janet K. Bryner
Mr. Andy Coons
Mr. and Mrs. William G. Gross
NEA, Office for Special
Constituencies
Ms. Rebecca Pringle
Mark Saunders
Ms. Dale Templeton
Ms. Janice Ward
Mr. John Wilson
Tribute(s) for Dee R.
Triemer
Mr. and Ms. Matthew E. Price
Mrs. Linda Blackwell
Mrs. Tricia E. Bodnar
Mr. and Mrs. Matt W. Bolger
Mr. James H. Brown
2 0 1 5
•
Ms. Karen Christian
Ms. Mo Collins
Mr. Kirk Dahlquist
Mr. and Mrs. Tim Dills
Mr. and Mrs. Steven Edwards
Ms. Naomi B. Epstein
Mr. and Mrs. Mike Fox
Ms. Jennifer Ganote, RN
Ms. Andrea Hall
Mrs. Mary Hansbrough
Ms. Frances Harper
Mrs. Luwayne Johnson
Mr. and Mrs. Ken Johnson
Mr. Daniel F. Klein
Mr. Leo Lawrenson
Ms. and Mr. Laura Marks
Ms. Meghan McGee
Mr. and Mrs. David Michaels
Mrs. Amy B. Miller
Mr. and Ms. Jason A. Mitchell
Dr. and Mrs. Greg Mlynarczyk
HJC New Media
Mr. and Mrs. David W. Parkes
Mr. and Mrs. Chris Russell
Mrs. Annie Szilagyi
Dr. and Mrs. David M. Triemer
Tribute(s) for Shar Troxell
Ms. Ann E. Beaston
Mr. and Mrs. Maurice Rollins
Mrs. Deborah Zagroba
Tribute(s) for Jeuel Vinson
Mrs. Barbara M. Jones
Tribute(s) for Jeb Ward
Ms. Lynn G. Adams
AT&T United Way Employee
Giving Campaign
Ms. Amy Pitser Barnhardt
Mr. and Mrs. Scott F. Bauer
Mr. Jon Bolton
Mr. Edwyn Bowen
Mr. and Mrs. James E. Broyhill
Ms. Natalie Broyhill
Mr. Henry Burnett
Ms. Pam Byrd
Mr. James G. Chrysson
Dr. and Mrs. Harry R. Culp
Mr. and Mrs. Walton W. Curl
Ms. Diane P. Davis
Mr. Cary Driver
Mr. and Mrs. Paul Edmond
Mr. and Mrs. R. Dean Featherston
Firstgiving, Inc.
Forsyth Medical Center
Mr. and Mrs. Gerardo M. Galvan
Mr. and Mrs. Thomas O. Goodson
Ms. Lynn H. Gwyn
Mr. and Mrs. Benjamin Hatch
Ms. Beth Headley
Mr. and Mrs. Charles Hoffman
HS Dreher Capital
Mr. and Mrs. Ted Irvin
Ms. Annie M. Jenkins
Ms. Catherine Jourdan
Mr. and Mrs. Stanhope Kelly
Mr. and Mrs. William J.
Kennedy Jr.
Dr. and Mrs. Andrew L. Koman
Dr. and Mrs. A.D. Kornegay
Mr. and Mrs. Robert E. Lamy
Mr. John Little
Mr. and Mrs. John C. Lovett
Mr. and Mrs. John M. Lowrey
Mr. and Mrs. Douglas Lyles
Ms. Cynthia Mann
Ms. Lessie J. Mann
Dr. and Mrs. David F. Martin
Mr. and Mrs. Thomas K.
McKiernan
Ms. Betsy Miller
Mr. Charles W. Miller
Ms. Elizabeth B. Miller
Mr. and Mrs. William M. Miller
Ms. Janet L. Morgan
Mr. and Mrs. John F. Morrow
Novant Health, Inc.
Ms. Amy Orser
Mr. and Mrs. Richard S. Paules
Dr. and Mrs. Gary G. Poehling
Mr. Billy D. Prim
Mr. and Mrs. James S. Rice
Mr. and Mrs. William M.
Satterwhite
Mr. and Mrs. Paul Savage
Mr. John V. Schweppe
Mr. and Ms. Gregory Shelness
Ms. Marie A. Sides
Ms. Ellna Simpson-Elton
Mr. and Mrs. Kenneth Sisk
Mr. and Mrs. Michael R. Trundle
Mr. and Mrs. James R. Urbaniak
Mr. and Mrs. David Urquia
Wake Forest Univeristy Health
Sciences
Mr. and Mrs. T. Robert Ward, Jr.
Mrs. Eileen Wilhem
Mr. and Mrs. Garrett Williams
Mr. and Mrs. David W. Wingate
Mr. and Mrs. Jonathan R.
Wingate
Tribute(s) for Raymond H.
Wheeler
Mr. and Mrs. Scott Palmer
Tribute(s) for Christopher
T. Winkler
Mr. Jason B. Adams
Ms. Elizabeth Beatty
Mrs. Marisa Berlinger
Ms. Margaret Bessel
Ms. Mary Boylan
Mrs. Melanie L. Braddock
Mrs. Nancy Broughel
Mr. and Mrs. Louis Brusati
Mr. and Mrs. Bruce Davidson
Mr. Allen W. Doss
Mrs. Tracy J. Dykeman
Ms. Gina Elliott
Mr. and Mrs. Gene R. Harrison
Mr. and Mrs. Robert Judisch
Ms. Deborah Love
Mr. Kevin McGarry
Mr. Richard McGoldrick
Mrs. Christine McGrath
Mr. and Mr. William R. Murphy
Mrs. Unhui Nguyen
Mr. and Mrs. John O’Connor
Mr. and Mrs. Emerson Osborn
Mr. and Mrs. Jason Osborn
Ms. Gina Romano
Mrs. Helen Scholl
Mr. and Mrs. Peter Vermilyea
Mr. Karl T. Winkler
Mr. and Mrs. Walter Winkler
11
ADULTS WITH TSC CORNER
Why I Am Passionate About
Adults with TSC
BY KATHY HENKEL
H
ello, my name is Kathy Henkel,
I am 58 years old and I live in
Waynesboro, VA. My husband
Charlie and I have been married for
39 years and we have two awesome
children. Our daughter, who has been
married for six and half years, is 35, and
our 31-year-old son has been married
for nearly two years.
I am the volunteer Adult Regional
Coordinator for Region 8. This region
includes Delaware, Maryland, North Carolina,
South Carolina, Virginia, West Virginia, and
Washington, DC. I am also a volunteer on
the TS Alliance’s Adult Task Force.
I would like to invite you to the Regional
TSC Conference in Winston-Salem, NC,
on September 26, followed by a walk on
September 27. If you would like additional
information for this event or update your
contact information for Region 8, please
reach me by email (uneakmom@gmail.
com) or by phone (540-949-0582). You
can also send me a private message on
Facebook (Kathy Eppard Henkel).
I am often asked why I am so passionate,
dedicated, and steadfast about TSC and
adult issues. Where does my perseverance
come from? I could write many books on
our life’s journey, but my space is limited.
My daughter, Kristy, was born in May
1980. She seemed perfect other than a
unique white strand of hair and I was reassured this was normal. She was ahead of
schedule until some odd behavior started.
During our trips to the pediatrician, I was
told this was baby play.
My mother had seizures when I was
younger and my “mommy” instinct demanded
an EEG. After a misdiagnosis, we were
blessed to get a neurologist who listened to
me. After a woods lamp test and a brain CT,
he said her pediatrician would speak to us.
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I’m still hearing from
adults who need support
from other adults and, as
long as my health allows,
I pray I will give hope to
parents by continuing to
support TSC adult needs.
I wish the neurologist had because the
pediatrician took us into a storage closet to
tell us our daughter had tuberous sclerosis
complex. He didn’t even pronounce it correctly, and he followed by saying we should
“put her in an institution before you get
too attached.” He got a mouthful from me,
and I was loaned a medical textbook. Her
neurologist immediately started the first
of 160 ACTH injections for her infantile
spasms and 21 days later (October 1980),
we were sent home.
I made a decision that day. Much has
happened since that time, but I have never
wavered from those choices. The most
important choices were to keep my faith
in God and not to blame myself for the
genetic gene. I decided to focus on what
I could control, not on what I couldn’t. I
kept my marriage a priority, researched
TSC, reached out to others and became
an advocate with lots of love.
We are blessed that Kristy has a mild
case of TSC without any noticeable seizure
activity for more than 30 years. After nearly
two dozen surgeries, the world does not
agree on its mildness. However, the TSC
community understands my logic. She
graduated from college, drives, runs her
own home business and loves her life.
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We had applied for adoption and I was
scheduled for a partial hysterectomy when
some blood work confirmed the news of
my son. In my eyes, he was another miracle
and we were blessed he didn’t have TSC.
I have heard how siblings feel slighted.
No matter my fatigue, I said I would make my
son know he was as loved, and as special
as his “sissy.” The bond our family of four
has built is amazing. No matter how hard
sit was at times, I tried to find the good
and give them some fun and laughter.
I have been passionate about TSC
adults long before my daughter grew
into her adult years. Through the years
of much TSC volunteer work, like selling
Danish Kringles or gift wrap and making
phone calls to name a few, I always spoke
at great lengths on the rare occasion I
was able to talk with a TSC adult.
I always said these kids are going to
grow up some day and the adults are our
next main puzzle piece. This disorder is
variable and we need to continue to do
research for the adults.
The TS Alliance has come a long way,
and I am so excited the adult initiative is
on fire. Thank you to the staff, especially
Vicky Whittemore who I bugged before
she left, and now Dena Hook.
You see, years ago I so “needed” to
hear TSC success stories and they were
rare. I’m still hearing from adults who
need support from other adults and, as
long as my health allows, I pray I will give
hope to parents by continuing to support
TSC adult needs.
The TS Alliance and this community
form an unbreakable support group with
a bond outsiders do not understand. No
one should have it as bad in 2015 as I
had in 1980, and I hope I have made a
tiny difference!
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Alliance
Announcing Junior Leader Program
for Young Adults!
A
s part of our efforts to provide
resources to all age groups
from infancy through adulthood, the TS Alliance has worked with
a team of volunteers to create the
Junior Leader position designed for
young adults ages 17-23.
The Junior Leader Program was
designed with post-high school education in mind – whether it’s trade school,
certification or earning an associate’s
concluding with an exit interview with the
Community Outreach Manager at the TS
Alliance. Upon completion of the program,
participants select one of the following
awards; an Amazon Kindle Fire Tablet
or a $250 Amazon Books Gift Card.
The TS Alliance is now accepting
applications for the 2015-2016 Junior
Leader Program. For an application
please contact Christen Bell at cbell@
tsalliance.org or 800-225-6872 x232.
or bachelor’s degree. The TS Alliance is
offering an opportunity for young adults
with TSC, or their siblings, to get involved
with their local Community Alliance to
offer support while raising awareness
for TSC.
The program, which launches in the
fall of 2015, runs for the duration of the
school year. Throughout the school year,
program participants will complete a
series of awareness and support activities,
FDA Approves Rapamune to Treat LAM
T
he U.S. Food and Drug
Administration recently approved
Rapamune® (sirolimus), to treat
lymphangioleiomyomatosis (LAM), a
rare, progressive lung disease that
occurs mostly in women (and a small
number of men) with tuberous sclerosis
complex (TSC). This is the first drug
approved to treat the disease.
“This approval of Rapamune is a huge
advance for people with LAM,” says Kari
Luther Rosbeck, President & CEO of the
TS Alliance. “The TS Alliance salutes The
LAM Foundation for its role in advocating
for FDA approval as well as Dr. Frank
McCormick who was the lead investigator
for the pivotal MILES Trial that led to this
approval.” The TS Alliance provided partial
funding for the MILES Trial through a
Rothberg Award for Courage in Research.
LAM is characterized by an abnormal
growth of smooth muscle cells that invade
lung tissues, including the airways, and
blood/lymph vessels that cause destruction
of the lung, resulting in airflow obstruction,
and limiting the delivery of oxygen to the
body. LAM is a very rare disease. According
to the U.S. National Library of Medicine,
only between two and five women per
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of the Office of New Drugs in the FDA’s
Center for Drug Evaluation and Research.
The safety and efficacy of Rapamune
for treatment of LAM were studied in a
clinical trial that compared Rapamune with
an inactive drug (placebo) in 89 patients for
a 12-month treatment period, followed by a
12-month observation period. The primary
endpoint was the difference between the
groups in the rate of change in how much air
a person can exhale during a forced breath
in one second (forced expiratory volume
in one second or FEV1). The difference in
the average decrease in FEV1 during the
12-month treatment period was approximately
153 mL. After discontinuation of Rapamune,
the decline in lung function resumed at a
rate similar to the placebo group.
The most commonly reported side
effects associated with Rapamune for
the treatment of LAM were mouth and
lip ulcers, diarrhea, abdominal pain,
nausea, sore throat, acne, chest pain, leg
swelling, upper respiratory tract infection,
headache, dizziness, muscle pain and
elevated cholesterol. Serious side effects
including hypersensitivity and swelling
(edema) have been observed in renal
transplant patients.
million women worldwide are known to
have the disease.
Rapamune, which is available as both
a tablet and an oral solution, was originally
approved in 1999 as an immunosuppressive agent to help prevent organ rejection
in patients 13 years and older receiving
kidney transplants. Because Rapamune’s
sponsor demonstrated the drug may offer
a substantial improvement over available
LAM therapies, it received breakthrough
therapy designation. Rapamune also received
orphan product designation for this indication because LAM is a rare disease or
condition. Development of this drug was
also supported in part by the FDA Orphan
Products Grants Program, which provides
grants for clinical studies on safety and/or
effectiveness of products for use in rare
diseases or conditions.
“Different FDA programs, such as orphan
product designation and breakthrough
therapy designation, provide sponsors
with financial incentives and access to
increased interactions and advice from
FDA to facilitate development and timely
approval of innovative treatments for rare
diseases, which might not otherwise be
developed,” said John Jenkins, M.D., director
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TSC Clinics “Up Close” — Israel
SHAARE-ZEDEK TSC CLINIC, JERUSALEM AND THE CLINIC FOR MULTIDISCIPLINARY
TREATMENT OF TUBEROUS SCLEROSIS AT SAFRA CHILDREN’S HOSPITAL,
SHEBA MEDICAL CENTER, TEL HASHOMER
R
of treating epilepsy in TSC patients is
truly challenging.
ecently, TS Alliance President
& CEO Kari Luther Rosbeck
and Manager of Research and
Global Affairs Katie Smith visited the
two TSC Clinics now operating in Israel.
This ar ticle continues an inter view
series with the healthcare professionals who provide care and educational
support to those affected by tuberous
sclerosis complex (TSC), including:
Were there any challenges
you faced in starting your TSC
clinic? If so, what were they?
Left to right: Kari Luther Rosbeck, Hili Penso, Prof.
Varda Gross-Tsur, Dr. Efrat Ben Shalom, Dr. Tal Gilboa,
Katie Smith, Dan Bloom
• Tal Gilboa, MD, Director of the
Shaare-Zedek TSC Clinic; and
• Michal Tzadok, MD, Director
of The Clinic for Multidisciplinary
Treatment of Tuberous Sclerosis at
Safra Children’s Hospital.
others. I finished my residency in pediatrics
and was already interested in neurology,
especially epilepsy and the neurogenetic
disorders. My pediatric neurology training
at the Montefiore Medical Center and
Albert Einstein College of Medicine in
Bronx, NY was fascinating. I was trained
What motived you to choose
by some of the world’s leading epileptolomedicine as a career and how
gists and researchers who gave me the
did you get interested in TSC?
best foundation to develop my practice.
I was perplexed by the complexity of
Dr. Gilboa: Ever since I was a child I was
west syndrome (infantile spasms) and its
interested in biology. It was clear to me
treatments. On a mentoring session at an
that my career will be something related to
American Epilepsy Society meeting, Dr.
biology, genetics, and humans, so medicine
Elizabeth Thiele told me that based on my
was the perfect combination. Only during
areas of interest I should establish a TSC
medical school did I realize the reward
clinic. “And how would I do it? ” I asked.
that accompanies the profession: helping
“Simply put up a sign,” she
said. And so I did.
Left to right: Katie Smith, Prof. Bruria Ben-Zeev, Dr. Shoshi Greenberger, Dr.
Michal Tzadok, Dr. Einat Azaria-Lahav, Kari Luther Rosbeck, Dan Bloom
D r. Tzadok : I a lways
knew I wanted to go into
medicine. I felt it could
integrate a therapeutic
profession with a constant ability to learn and
grow professionally. I was
drawn to TSC as a consequence of my primary
interest in pediatric epilepsy, and the complexity
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Dr. Gilboa: Gladly, the head of the
pediatric neurology unit at Shaare Zedek,
Dr. Ruth Shalev, encouraged me to start
running the clinic. We had a few families
that had been followed in our clinic for
some time, and we scheduled all for
the TSC clinic with the entire team. The
main obstacle was, and still is, financial.
Since the clinic requires a team of expert
physicians as well as other members, the
cost is high, but the insurance coverage
is only partial.
Dr. Tzadok: When building our TSC
multidisciplinary clinic, I found it a little
difficult to convince patients and families to transfer from their local pediatric
neurologist to a specialized clinic, which
might be far away from their home.
What are some of the specialized services and programs
your clinic provides to the TSC
community in Israel?
Dr. Gilboa: Our team participates in every
TSC meeting, conference or other activity
in Israel. We participate in organizing
scientific meetings, present our clinical
work and cooperate with the TS Alliance
of Israel. Recently, we helped with proofing of the translation of the TS Alliance
information brochure into Hebrew.
Dr. Tzadok: Our clinic organizes, in
association with two other Israeli centers, an annual one-day conference for
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Alliance
physicians and families that
provides updates about recent medical, psychological and research issues.
What are the most challenging
aspects of your work as it relates
to those affected by TSC?
Dr. Gilboa: Dealing with families and
children with chronic disorder is challenging, both professionally and emotionally.
Of course, TSC is a multi-organ disorder
and requires a vast knowledge; therefore,
the best care can only be provided by a
professional team. Breaking the news to a
family, usually after meeting them for a very
short time, is always a difficult situation.
Dr. Tzadok: The fact that TSC is a
systemic disease requires different fields
of expertise to work in full cooperation in
order to optimize patient treatment.
the primary and stressful period following
diagnosis of TSC in their children. I also
see great importance in the fact that our
staff of experts, each one contributing the
relevant knowledge in his field of expertise,
can significantly improve patients’ and
families’ quality of life in every functional
aspect affected by the syndrome.
I can think of something – for one it is the
psychiatric problems, for another it is the
epilepsy and for the third it is the process
of having healthy children.
Dr. Tzadok: Honestly, I think that the
ministry of health should recognize TSC
as an “orphan disease,” thereby making
sure the patients receive more extensive
financial and social aid. Moreover, funding
genetic screeing tests for patients, which is
currently funded exclusively by the patients,
would be of great help for many families.
Do you have any research
interests? If so, what are your
current projects?
Dr. Gilboa: Being a pediatric neurologist,
specializing in epilepsy, I am interested
in infantile spasms. We are currently in
the initial phase of a study aimed at the
outcome of infantile spasms. We are
also participating in the TOSCA study,
collecting prospective data on the natural
history of TSC.
What are the most fulfilling
aspects of your work?
Dr. Tzadok: My academic work focuses
mostly on clinical research regarding novel
treatments for refractory epilepsy.
Dr. Gilboa: For me, the most fulfilling
part is the long-term relationship with the
families. I admire their strength, dealing with
tremendous challenges, and I am grateful
that they allow me to help their children.
Knowing what you know about
TSC, if you had the power to
make a change in the lives of
those affected, what would it
be?
Dr. Tzadok: I find a great deal of satisfaction in relieving families’ anxiety during
Dr. Gilboa: Choosing one thing to change
in my patients’ life is difficult. For each one
How do you manage to balance
your time between your clinical
responsibilities and personal
time, and what do you enjoy
doing outside of work?
Dr. Gilboa: I guess juggling is the
appropriate term. I love reading, jogging,
traveling with my family and cooking. I try
to do it all, but it seems like there is never
enough time.
Dr. Tzadok: I think it is a question every
doctor faces daily. I believe it is essential
to define your priorities, both personally
and professionally. In addition to a regular
sports routine that includes jogging and
swimming, which I am committed to, I
enjoy traveling with my family, both in
Israel and abroad.
The TS Alliance Visits Israel
Left to right: Dan Bloom, Katie Smith, Savion Yosef and
Kari Luther Rosbeck.
BY KATIE SMITH, MANAGER OF RESEARCH AND GLOBAL AFFAIRS
O
n April 23, 2015, TS Alliance
President & CEO Kari Luther
Rosbeck and I traveled to Israel
to meet with the TS Alliance of Israel, the
TS Alliance’s first Global Alliance.
The Global Alliance Program officially
launched in 2014 and was established as a
way for the TS Alliance to share experiences
and resources and to address unmet needs
within the global TSC community by assisting
in the start-up or support of TSC-related
organizations in other countries.
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Since 2013, we have been working with
Dan Bloom and Savion Yosef, TS Alliance
of Israel co-founders, to create the Global
Alliance program and establish a formal
partnership, which was finalized in 2014.
Establishing this partnership occurred over
many calls, emails, consultations with board
members, banks and lawyers both in the
United States and Israel.
Leading up to our trip, we had several
calls discussing what to prepare for, how we
could best utilize our time and resources,
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what information to bring, and topics to
discuss when we spoke at the Community
Meeting. Kari and I could not wait to meet
•
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TS Alliance of Israel Community Meeting participants.
everyone and see the growth that had taken
place over the past two years.
Arriving in Tel Aviv, we were welcomed
with open arms. Dan and Savion picked
us up from the airport and our whirlwind
trip began! That night, Carol Hoffman
hosted a wonderful dinner for us and the TS
Alliance of Israel board members. Earlier
this year, the TS Alliance of Israel held
its first general assembly and elected an
official board of directors with 12 members
and oversight committee of two.
We visited the first two international
TSC Clinics to receive TSC Clinic designation from the TS Alliance—The Clinic for
Multidisciplinary
Tr e a t m e n t o f
Tuberous Sclerosis
at Safra Children’s
Hospital, Sheba
Medical Center
in Tel Hashomer
where we met with
Clinical Director,
Michal Tzadok, MD, and her team; and
finally we went to Shaare-Zedek TSC Clinic
in Jerusalem to meet with Tal Gilboa, MD.
We also met with a third clinic considering TSC designation: Dana Children’s
Hospital in Tel Aviv where we visited with
Jonathan Roth, MD and Prof. Shlomi
Constantini. Dr. Roth played an important
role in developing the 2012 TSC Consensus
Guidelines.
On April 27, the TS Alliance of Israel
held its first Community Meeting. The
event was a great success with at least
60 attendees, including families, individuals, caregivers, clinicians and healthcare
providers. Kari and I spoke about
the TS Alliance, providing updates on
our programs, research and global activities.
It was a great honor to have been invited
to participate in this meeting.
A Global Alliance is a structured group
of empowered and caring volunteers
who work closely with the TS Alliance to
accomplish the following: facilitate local
connections for individuals and families
affected by TSC, raise revenue and increase
awareness while supporting the mission of
the organization. I cannot imagine having
better partners for the inaugural Global
Alliance than the TS Alliance of Israel. We
look forward to expanding this program,
adding new Global Alliances and building
our international network, fostering stronger
links between the TS Alliance, communities
and individuals around the world.
If you are interested in learning more
about starting a Global Alliance, please
contact me at [email protected] or
800.225.6872.
Nomination Open for Gomez Award
N
ominations are being accepted
until August 1, 2015, for the
Manuel R. Gomez Award. This
award is given in memory of Manuel R.
Gomez, MD, the “Father of TSC” in the
United States.
Dr. Gomez provided care and compassion
for hundreds of individuals with TSC during
his career, and he sparked interest in the
diagnosis and clinical care of individuals
with TSC. A nominee should be someone
who has made a significant impact on our
understanding of TSC in research and/or
impacted the delivery of clinical care for
individuals with TSC.
The previous awardees review all
nominations and serve as the Gomez
Award Selection Committee. They include:
2014 – Petrus J. de Vries, MBChB,
MRCPsych, PhD, University of Cape
Town, Cape Town, South Africa
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2013 – John J. Bissler, M.D., University
of Tennessee Health Science Center,
Memphis, TN
2012 – E. Martina Bebin, MD, MPA,
University of Alabama at Birmingham,
Birmingham, AL
2011 – Howard Weiner, M.D. New York
University Medical Center, New York, NY
2010 – Mark Mausner, M.D.
2009 – Sergiusz Jóźwiak, M.D., Ph.D.,
Children’s Health Institute, Warsaw,
Poland
2008 – Elizabeth A. Thiele, M.D.,
Ph.D., Carol and Jim Herscot Center
for Children and Adults with TSC at
Massachusetts General Hospital,
Boston, MA
2007 – Ann Hunt, TS Association,
Oxfordshire, UK
2006 – David Neal Franz, M.D.,
Children’s Hospital Medical Center,
Cincinnati, OH
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2005 – Elizabeth
Petri Henske, M.D.,
Brigham & Women’s
Hospital, Boston, MA
2004 – Hope Northrup, M.D.,
University of Texas – Houston, TX
2003 – E. Steve Roach, M.D., Ohio
State University, Columbus, OH
2002 – David Kwiatkowski, M.D.,
Ph.D., Brigham & Women’s Hospital,
Boston, MA
2001 – Vicky Whittemore, PhD,
National Institutes for Health,
Bethesda, MD
To nominate yourself or someone
else, please contact Katie Smith at the
TS Alliance for the nomination form and
other instructions at ksmith@tsalliance.
org or 800.225.6872.
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NIH-Sponsored Workshop Held to Update
Strategic TSC Research Plan
BY STEVE ROBERDS, PHD, CHIEF SCIENTIFIC OFFICER
T
he National Institute of
Neurological Disorders and
St r o ke ( N I N D S ) , o n e of t h e
National Institutes of Health (NIH),
sponsored a workshop held March
10 -12, 2 015 , in B et he sda , M D, to
update the strategic plan for TS C
research for the next five to ten years.
The workshop was attended by more
than 80 invited attendees, including
basic scientists, clinician researchers,
program leads from five institutes of the
NIH, leadership from the Department
of Defense’s TSC Research Program
( TS CRP) , and the TS A lliance . In
addition to TS Alliance staff, Board
member Debora Moritz and TSCRP
Integration Panel community representative Ron Heffron also participated in
the workshop.
The goals of this workshop were to:
a) evaluate research progress since the
last NIH-sponsored strategic plan was
developed in 2002, b) identify key gaps
and new opportunities for the field, and
c) develop a new set of research recommendations and short- and long-term
priorities for the TSC field.
Workshop organizers recognized that
input from the TSC community was vital
to ensure that future TSC research is
focused on the issues that matter most
to those affected by TSC. Therefore,
adults and teens affected by TSC and
caregivers of individuals of any age
affected by TSC were invited to take a
short online survey to provide guidance
and perspective into the direction of
TSC research over the next ten years.
Survey questions were developed by the
TS Alliance with input from researchers
participating in the workshop and from an
advisory panel consisting of caregivers of
individuals with TSC and adults affected
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improving TSC disease models, developing
clinical biomarkers for TSC, and facilitating
development of new therapeutics and
clinical trials. Some recommendations
strongly supported initiatives that the TS
Alliance were just beginning, including a
TSC Biosample Repository and a TSC
Preclinical Consortium. Also, participants
saw a huge need for human-derived
cells, such as induced pluripotent stem
cells or cells derived from live donated
tissue. Such cells would be valuable for
testing potential new therapies before
moving into clinical studies as well as
understanding why the effects of TSC
var y from person-to-person. Some
recommendations require solutions that do
not currently fit within a standard 5-year
NIH funding cycle, such as measuring the
long-term positive and adverse effects of
clinical interventions, or the validation of
surrogate biomarkers. Of course, basic
research into TSC-related biology and
supporting early career development of
new TSC researchers are also critical
aspects of a long-range strategy.
Recommendations from the workshop
are being prepared for publication in
a peer-reviewed scientific journal and
publicized to TSC investigators, major
funding organizations, constituents and
other stakeholders in the TSC field. The
TS Alliance appreciates the contributions of all participants and the many
individuals at the NIH who supported
and enabled this workshop to succeed.
We are especially grateful to Dr. Walter
Koroshetz, Director of NINDS, and Dr.
Laura Mamounas, TSC Program Officer
at NINDS, who championed this idea and
made it happen for the ultimate goal of
accelerating innovative and impactful
research to improve the lives of those
affected by TSC.
by TSC. Responses from 352 community
members were received.
When survey-takers were asked, “if you
could choose ONE question for researchers
to answer over the next five years, what
would it be?” the common theme was how to
eliminate manifestations—primarily epilepsy
but also lymphangioleiomyomatosis (LAM)
and angiomyolipomas, TSC-associated
neuropsychiatric disorders (TAND), and the
passing of TSC on to children. Caregivers
reported the manifestations of TSC that
were most problematic for their dependents
were learning or memory difficulties,
epilepsy, behavioral or social issues,
and communication problems, followed
closely by anxiety/depression and sleep
problems. Affected adults who took the
survey were, naturally, cognitively wellfunctioning and in general less affected
by epilepsy. Anxiety or depression and
kidney issues were the major problems
faced by affected adults in this survey.
In addition to the community survey,
invited workshop attendees participated
in considerable pre-work to gather data
and align on goals ahead of the meeting
to ensure the precious face-to-face time
was utilized for discussions and consensus building. Four world-leading TSC
experts donated their time to design the
workshop and drive the pre-work forward
in four groups: Dr. Kevin Ess (epilepsy),
Dr. Elizabeth Henske (growth and tumor
biology), Dr. Brendan Manning (molecular
pathways and therapeutic opportunities),
and Dr. Mustafa Sahin (neurocognition).
During the workshop, attendees participated in five face-to-face breakout sessions
to discuss key gaps in knowledge that were
identified by the pre-work: understanding
why TSC affects individuals so differently
from person-to-person, gaining deeper
knowledge of TSC signaling pathways,
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Databases and Registries:
What Are the Differences?
R
esearchers use the term database and registry interchangeably, when in fact the term “registry” is a database, or collection
of information that is stored on one or more computers in a secure facility. The term “registry” is more commonly used to
describe a network of databases. The TS Alliance owns two different kinds of databases and collaborates with two other
groups that have developed a network registry.
What kind of registry/
database is this?
Who owns the
registry?
Who can join?
TS Alliance Database
TSC Natural History Database
(TSCNHD)
Rare Epilepsy Network (REN)
Registry
Rare Diseases Clinical Research
Network (RDCRN) Contact Registry
Constituent
Clinical
Patient
Contact
Tuberous Sclerosis Alliance
Tuberous Sclerosis Alliance
Patient-Centered Outcomes Research
Institute (PCORI)
National Institutes of Health (NINDS, NCATS,
NIMH, NICHD)
• Adult with TSC
• Caregiver or relative of someone with TSC
• Healthcare provider or researcher
• Friend of someone with TSC
• Industry partners
• Advocacy organization representative
• Anyone with an interest in TSC
*Minnesota Epilepsy Group, P.A., St. Paul, MN
Texas Scottish Rite Hospital for Children, Dallas, TX
New York University Medical Center, New York, NY
Massachusetts General Hospital, Boston, MA
Children’s National Medical Center, Fairfax, VA
A person with a diagnosis of TSC who is a • Open to a person with TSC and epilepsy Open to any person with TSC who lives in
the U.S. or any other country.
who is at least 18 years old who can
patient at one of the TSC Clinics* in the U.S.
consent for themselves or a patient of
that is conducting this TS Alliance sponany age who has a parent or legal guardsored research project is eligible to join.
ian that can consent on their behalf.
• Person lives in U.S. or any other country
and must read and understand English.
University of Chicago, Chicago, IL
UCSF Benioff Children’s Hospital Oakland, Oakland, CA
UCLA Medical Center, Los Angeles, CA
University of Texas, Houston
University of Alabama, Birmingham
The Cleveland Clinic Foundation, Cleveland, OH
University of Colorado, Denver
Miami Children’s Hospital, Miami, FL
Loma Linda University Medical Center, Loma Linda, CA
Pennsylvania Medical Center, Philadelphia, PA
Boston Children’s Hospital, Boston, MA
Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
The following table describes the differences and similarities between the four types of registries/databases.
(TSCNHD)
What is the
intended use of the
registry?
• To disseminate information related to TSC • To identify individuals with TSC who are
eligible to participate in research studies.
such as local and regional meetings and
• To learn more about the clinical features
events; government action news; and
of TSC and how it affects children and
“what’s new” in research.
adults over their lifetime.
• To send information.
Registry
• To accelerate research of people who
have a rare disorder that is associated
with seizures or epilepsy in the majority
of patients.
• To answer questions of interest to
patients registered in the REN.
To provide the following benefits to patients
enrolled in the registry:
• Information about TSC.
• News about new ongoing clinical studies
for TSC.
• Information on activities from TS Alliance.
Registrants will also have the opportunity to:
• Share information about themselves with
scientists and patient advocacy foundations.
• Choose to be contacted directly by
researchers to participate in clinical
studies.
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Continued from previous page
What type of
information is
collected?
• Basic profile about the constituent such
as name, gender, age, and contact
information.
The constituent’s connection to TSC, such as:
• Has TSC
• Family member has TSC
• A healthcare provider or researcher
(TSCNHD)
Registry
• A limited profile about the person with
TSC is collected that includes birth date,
gender, state or country of birth and
residence.
• Medical history about the person with
TSC collected from review of health
records.
• Basic profile about the person with TSC
and epilepsy or the caregiver of this
person.
• Survey questions related to seizure
characteristics, seizure history, the
affected person’s development, surgeries,
other conditions and symptoms, and if
applicable, caregiver’s quality of life
• Basic profile about the person with TSC
or family member with TSC and how they
can be contacted.
Other data that is collected includes:
• Is constituent a TS Alliance volunteer?
• Has constituent attended any TS Alliance
events?
• How has constituent supported the TS
Alliance?
Who enters the
information?
TS Alliance staff
TSC Clinic research staff
The person with TSC and epilepsy, or the
caregiver of family member with TSC.
The person with TSC or the caregiver of the
family member with TSC.
How do I join?
Email [email protected]
or call 800.225.6872
You need to be a patient at one of the clinics listed above. They will ask you to read
and sign a consent form.
https://ren.rti.org/Enroll
www.rarediseasesnetwork.org
How will my privacy • Your information is stored in a secure
be protected?
database.
• The TS Alliance does not share information without permission.
• Records are not sold or shared.
• Your information is stored in a secure
• This database does not collect your name, • Your information is stored in a secure
database.
database.
address or other contact information.
• Personal identifying information (such
• Only the clinic that obtained your consent • The REN uses your name, addresses,
as your name, addresses, telephone
&telephone number to contact you. They
has permission to contact you.
number) will never be given to anyone
will not share your contact information
• Your medical information is stored in a
without your permission.
unless required by law.
secure database.
What if I have
questions?
Email Jo Anne Nakagawa at jnakagawa@
tsalliance.org or call (240) 638-4654
Email [email protected]
or call 800.225.6872
Email [email protected] or call (301) 918-3728
or (888) 886-3745 (toll free in the US)
Email Rajna Filip-Dhima, MS at
[email protected]
Volunteer Corner
A
s many of you know, our organization thrives on the support of
thousands of volunteers across
the country. They allow our organization
to have a presence in 45 states through
34 Community Alliances, and we are
always looking to expand our reach.
As part of our initiative to grow community support and involvement we have
revamped our volunteer information. We
now have a list of applicable positions
posted on our website at www.tsalliance.
org/volunteer. When you visit the site
you will find job descriptions along with
location, required skills, required time, who
the position reports to, and how to apply.
Among the open positions are:
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• Chair, TS Alliance of the
Delta Region
• Step Forward to Cure TSC Walk
Chair: TS Alliance of Greater
Kansas City; TS Alliance of
Atlanta/North Georgia; and TS
Alliance of Tennessee, Nashville.
• Adult Regional Coordinator, Region
3 (Minnesota, North Dakota, South
Dakota, Nebraska, Iowa, Wisconsin,
Illinois)
Recruiting on an ongoing basis
are committee members for the local
Community Alliance support meetings
and gatherings, and the Step Forward
to Cure TSC walks.
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If you do not have a Community
Alliance near you but are interested in
helping us expand our reach to new parts
of the country, please contact Christen
Bell at [email protected] and ask about
starting a Community Alliance near you.
For a complete list of current Community
Alliances visit www.tsalliance.org and
click on “Find a Local Branch.”
Whether you have an hour a year, an
hour a week, or an hour a day, we have a
position that will fit your needs. Visit our
www.tsalliance.org/volunteer to find a
position that works for you.
Questions? Contact Christen Bell at
[email protected] or 800.225.6872
x232.
19
A Call to Action: You Can Help By
Participating in a Research Study
Rare Epilepsy Network
TSC or adults with TSC have signed up
since last fall. Please sign up by August 31,
2015. You do NOT need to provide your
social security number or copies of MRI and
EEG reports. These are optional requests. 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).
California at Los Angeles, University of
Texas at Houston
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 participate?
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, 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 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
[email protected]
or 617-919-3499.
are diagnosed with TSC may be eligible
to participate.
Compensation: There is no compensation for your participation in this study;
however, there is travel funding available.
Details: For more information, please
visit our website at www.tscstudy.com or
email us at [email protected] or contact
Rajna Filip-Dhima at 617-919-7068.
This study is being offered by TACERN
(TSC Autism Center of Excellence Research
Network), which includes Boston Children’s
Hospital, Cincinnati Children’s Hospital
Medical Center, University of Alabama at
Birmingham, University of California at Los
Angeles, and University of Texas at Houston.
NIH Lymphangioleiomyomatosis
(LAM) and Tuberous Sclerosis
Complex (TSC) Studies
progression, and potential treatment of
disease in patients with LAM and TSC.
Study Goals: The National Institutes
of Health (NIH), Cardiovascular and
Pulmonary Branch, is conducting research
studies on LAM and TSC. The purpose of
these studies is to characterize factors
and genes involved in the pathogenesis,
For further information, please contact:
Mary Haughey, RN,
National Institutes of Health
0 Center Drive, MSC 1590 Building 10,
Room 6D03
Bethesda, MD 20892-1590
Fax: 301-496-2363
Tel: 301-496-3632
Toll free 1-877-NIH-LUNG, #3
E-mail: [email protected]
Do you or your loved one have TSC
and epilepsy? Have you signed up for the
Rare Epilepsy Network (REN)? Epilepsy
caused by TSC is one of the rare epilepsies
in the network and occurs in about 85% of
individuals with TSC. As of June 25, 2015
less than 200 caregivers of children with
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, University
of Alabama at Birmingham, University of
TSC Biomarkers of Autism
Research Study: 3 to 12
Months Old with TSC Needed
What: The purpose of this research
study is to look for early signs of autism
in chldren with TSC, a genetic disorder
where autism is common.
Who: Infants 3-12 months old who
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For a list of other TSC-related clinical
trials, please visit www.tsalliance.
org/clinicaltrials.
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Reading Recommendations
Assistive Technology
Solutions in
Minutes, Book II
By Therese Willkomm, PhD, ATP
This book offers five-minute,
low-cost approaches for taking
ordinary items and turning them
into extraordinary solutions for
individuals with disabilities.
Picking up where the first book
left off, AT Solutions in Minutes,
Book II demonstrates creative DIY problem solving without the
need for power tools or electricity, empowering everyone to
be spontaneous and create solutions to everyday challenges
using everyday materials.
skills to children with Autism Spectrum Disorder. The games
include directions for assessing skills such as asking for toys,
getting the attention of others, reading nonverbal gestures,
understanding perspectives, and cooperating to solve problems. Using the principles of Applied Behavior Analysis, the
book takes teachers through motivating, prompting, shaping,
modeling, and reinforcing social skills while playing the games
and helping students learn to participate in other activities
such as demonstrating the social skill in role plays and the
natural environment. Perfect for teachers struggling to help
their students with autism learn to interact socially with their
peers, these games are sure to become a much-loved part of
students’ daily routines.
From Anxiety to
Meltdown
By Deborah Lipsky
Opening the Gate
By Ingrid Floyd
Opening the Gate introduces youth to the world of
wheelchairs and prosthetics.
Outstanding athletes Nick
Taylor, Hannah McFadden,
Jessica Long, Kevin Laue,
A nt h o ny N et t o , a n d G re g
Gontaryk recount the experiences that helped them participate effectively in sports and led them to the top of their
athletic careers.
Their stories will leave everyone laughing, inspired and ready
to reach for their own dreams. Opening the Gate helps youth
share in the experiences of athletes with disabilities through the
book’s stories, a cartoon, activities, quotes and useful websites.
Anxiety is the root cause of many
of the difficulties experienced
by people on the autism spectrum. Drawing on her extensive
personal experience and using
real-life examples to explain how
autistic people think, the author
highlights how meltdowns and
tantrums differ from each other,
and discusses the sources they
can stem from. She identifies how to spot triggers and prevent
outbursts from happening in the first place. Practical and
simple solutions for avoiding anxiety are offered throughout,
accompanied by calming techniques and suggestions for ways
to deal with tantrums when they occur.
My Life with TSC
By Evan Moss
Social Skills Games
and Activities for
Kids With Autism
By Wendy Ashcroft, Anne
Quinn, Angie Delloso
Social Skills Games and
Activities for Kids With Autism
provides complete instructions
for using fun, engaging games
and activities to teach social
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My Life with TSC, written and
illustrated by 11-year-old Evan
Moss, tells the story of what
it’s like to live with tuberous
sclerosis complex (TSC). Evan
takes a whimsical approach to explaining the daily challenges
he faces. He takes a serious topic, infuses his own sense of
humor and wit and leaves the reader with a smile and a sense
of hope.
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CONTINUED FROM PAGE 25
Special Events
How did your interview impact your
community and walkathon? I believe
this interview helped with local media
awareness, as well as educating about
TSC. Jill Horner, who interviewed me,
did a fantastic job of asking the right
questions to give an overview of how
TSC can affect an individual and some of
the daily struggles. Overall, the interview
brought attention to our walk; we had
higher attendance this year and raised
more money than in the past.
I think the interview validates the need
for as much media attention as we can
gain. Comcast Newsmakers already invited
me back next year for another interview,
which will allow additional time before
our walk occurs to get the information
out there, as well as to reach out to them
with any additional events we have going
on in our community.
As a parent of two children with TSC, I
want anyone and everyone to know about
our cause, our struggles, and how they
can help to make sure we continue on the
path to finding a cure. This opportunity
allows other parents and caregivers to
know they are not alone in the journey
and we are all a support to each other
through the celebratory times, as well as
the tumultuous times we face with this
Step Forward to
Cure TSC In the
News!
The media plays a significant part
in reaching prospective participants,
creating positive buzz about your event
and educating the general public about
our cause. We sat down this summer
with Shelly Meitzler, Chair for Step
Forward to Cure TSC – Delaware/Lehigh
Valley, to learn more about her exciting
interview with Comcast Newsmakers,
and Laura Marlin, Chair of TS Alliance
of Indiana, who was featured on a local
NBC affiliate.
Shelly Meitzler
How were you contacted by the
media? I was contacted by Comcast
Newsmakers about doing an interview
after I sent a donation request letter for
our 2015 walk. They responded back
and said they would love to do a feature
story about TSC and our upcoming walk.
How was the interview? It was a
perfect opportunity to get some media
attention locally about TSC and our walk.
Make Your Steps
Count
Partnering with the TS Alliance offers
unique ways for individuals, community-based
organizations and companies to strengthen
the TS Alliance from the inside out. TSC
research and programs are expensive, but
community-driven events such as Step
Forward to Cure TSC, help generate a
significant amount of funding and give us
the opportunity to engage the community
in a successful and inspiring way.
We need people with the following
attributes:
• Enjoy volunteering
• Can inspire greatness in others
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• Team player
• Have a “can do” attitude
Teenagers can earn six or more qualified volunteer hours that can be applied to
their high school graduation requirement.
Join our Step Forward to Cure TSC
movement today and be a part of something
great! Across the country we need fresh
and reinvigorated volunteers, teams, sponsors and planning committee members
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disease on any given day. This interview
allowed me to describe some of the unknown
that we worry about day to day and to
know someone is interested in our story
renews my faith that many people want
to help, they just need to know how they
can help. I look forward to my continued
partnership with Comcast Newsmakers
and was blessed to have the opportunity.
Laura Marlin
Why were you contac ted by the
media? I actually contacted them! Then,
once one station got the story, others
joined in. It was exciting!
What was the best part? I think the
best part was the awareness it brought to
the newscasters, staff and everyone in the
station. Of course, we can hope that was
brought to their viewers, but to experience
it first hand was pretty rewarding.
How did your interview impact your
community and walkathon? I think
it brought a lot of excitement to the
community, and we had about 300 in
attendance at the walk. It was very exciting! Then, to see the cameras there the
day of the walk was also very inspiring.
Everyone was so happy!
as well as ideas on how to improve our
walks. Learn fun and exciting ways to
raise awareness in your community
while raising necessary dollars to fund
TSC research and TS Alliance support
programs.
For more information, contact Gail
Saunders, Senior Manager of Events
at (800) 225-6872 or gsaunders @
tsalliance.org for more details or visit
www.stepforwardtocuretsc.org/volunteer.
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Pillar Hotels and
Resorts Supports
Step Forward to
Cure TSC
By Jolynda Ward
On behalf of Pillar Hotels and Resorts,
I had the pleasure of attending the Step
Forward to Cure TSC walkathon in Frisco,
Texas recently. Although it was a stormy,
dreary day, it was amazing how many people
came out to support this worthy cause. I
have to admit, it was a great excuse for
me to dress up in my favorite costume!
As we gathered under the pavilion,
hoping the rain would clear, you could
feel the energy and excitement of all of
Other Special
Events
The 14th Annual Comedy
for a Cure® was held at the
Globe Theatre in the heart of
Universal Studios Hollywood
on Sunday, April 12, 2015. The evening
featured hilarious performances by Mark
Eddie, Craig Shoemaker and a return to
the Comedy for a Cure stage
by TS Alliance supporter Larry
Miller. We were also joined by
our gracious Honorary Chair
Jim O’Heir, Emcee Mo Collins,
and Host Alex Skuby, who
each continue to champion
our cause.
We were humbled to present
the Leadership in Courage
Award to the Heffron family
and everyone in the room was
charmed by 10-year-old Bao’s
speech. An Honoree Tribute was
also given to Helena Foulkes,
Executive Vice President of
CVS Health and President of
CVS/pharmacy, for her years
of commitment to TSC. The
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these wonderful people coming together to
support one another. We saw teams with
matching t-shirts in support of a friend or
family member and everyone was smiling,
laughing and having a good time.
I caught the eye of a little girl with
big beautiful eyes. As our eyes met, her
face broke out into a huge smile, as did
mine. I sat next to her mother, and we
started talking. Her daughter quietly
wedged in between us as she continued
to stare at me. In a quiet little voice she
said, “I’ve always wanted to meet you.” In
that moment, I realized that she thought I
really was Super Girl!
I put my arm around her, gave her a big
hug and told her that I had always wanted
to meet her too! She told me her name was
Zena and she was a Super Hero as well.
Her mom pulled
out her phone
and showed me
a picture of Zena
in a hospital bed,
clearly just out of
surgery, dressed
in a tiny Super
Girl outfit. Her
Jolynda and Zena.
face glowed as
she told me about how much she loved
me “aka Super Girl” and my eyes welled
up with tears as I assured her she was
the real Super Girl!
I will never forget that beautiful little
girl, and how it felt for a moment to be
famous! Memories like this are what
these walkathons are all about – making
a difference one person at a time.
event this year was dedicated
the Goff Family in honor
of Tiara Goff who lost her
battle with TSC earlier this
year. Tiara’s mom, Tiffani,
gave an extraordinary and
inspiring memorial speech.
We thank all our partners for making
the evening possible and helping raise
$185,000 including the fabulous Comedy
for a Cure planning committee, auctioneer
Damon Casatico, Ingram Design Studio,
Traci Hoffberg Events and Tom Bercu
Presents, and our incredible major sponsors including CVS Health, Mallinckrodt,
MarketCast, Variety, Emily’s Hope - the
Szilagyi Family, Glacier Design Systems,
Inc., Lundbeck, Maginn Family, Novartis,
Twentieth Century Fox, and WNC &
Associates Inc.
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23
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Plan now to join us this Fall for a spectacular evening
of theatre at one of the Tuberous Sclerosis Alliance’s
FOUR DECADES | ONE COMMUNITY Celebrations!
WEDNESDAY, SEPTEMBER 30: MINNEAPOLIS, MN
THURSDAY, OCTOBER 8: WASHINGTON, DC
For more information and to purchase tickets,
please visit www.tsalliance.org/4Decades today.

PDF File - Tuberous Sclerosis Alliance

Transcription

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