My Earthly Journey with Tiara Has Ended

Transcription

A MAGAZINE FROM THE TUBEROUS SCLEROSIS ALLIANCE
WINTER 2015 | VOLUME 135
My Earthly
Journey with
Tiara Has
Ended
Cover Story
PAGE 6
Section 504:
Civil Rights Law
You Should Know
PAGE 8
Adults with
TSC Corner
PAGE 12
Volunteer Participation
in Clinical Trials Helps
Improve the Lives of
People with TSC
PAGE 14
801 Roeder Road, Suite 750
Silver Spring, MD 20910 USA
(301) 562-9890 Toll-free: (800) 225-6872
Fax: (301) 562-9870
www.tsalliance.org
WINTER 2015 • VOLUME 135
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
A
s we enter 2015, the TS Alliance is pleased to announce several
new or expanded partnerships as we continue to further our mission to find a cure for tuberous sclerosis complex (TSC) while
improving the lives of those affected.
One groundbreaking development is our new partnership with Van
Andel Research Institute in Michigan to create the first TSC Biosample
Repository, which will collect and store biological samples (like blood, DNA
or tissue) from people with TSC. To study the variability of TSC person to
person, samples in the repository will be available to qualified researchers
worldwide and will be associated with detailed clinical data, such as that
found in our existing TSC Natural History Database. Sample collection
begins in spring 2015.
In March, the TS Alliance and the National Institute of Neurological
Disorders and Stroke at the National Institutes of Health will co-sponsor
a workshop called “Unlocking Treatments for TSC: 2015 Strategic Plan.”
This meeting will update a coordinated, comprehensive TSC research plan
and includes the following overall goals: 1) evaluate research progress
to date; 2) identify key gaps and new opportunities for the field; and 3)
develop a new set of research recommendations and priorities for the
TSC field. After the meeting, a white paper will be written to summarize
meeting recommendations for dissemination to TSC investigators, major
funding organizations, people affected by TSC and other stakeholders.
We are also excited to more closely partner with The LAM Foundation
in the future, starting with a joint Board of Directors meeting in Cincinnati
October 23-24. A TSC/LAM community educational meeting at Cincinnati
Children’s Medical Center will also take place October 23 so stay tuned
for more details.
Finally, for the first time, the TS Alliance will join with the Tuberous
Sclerosis Association in the United Kingdom to present the “2015
International TSC Research Conference: From Treatment to Prevention,” to
be held September 10-12 at Mercure Windsor Castle Hotel in the United
Kingdom. This, too, is an important next step to ensure researchers from
around the world are involved in our quest for better treatments and a cure.
We are driven to advance these relationships because of our partnership
with you, the TSC community. When someone in our community passes
away, it touches us all and reminds every one of the importance and urgency
of our work. In this spirit, Tiffani Goff wrote this issue’s cover story as a
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
Step Forward to Cure TSC ®
2015 S C H E D U L E
Go to www.StepForwardtoCureTSC.org
to register for a walk in your community.
Check back often for updated dates and
locations. For 2015, the theme for the
walks is Super Heroes. Put on your cape,
mask, dress like your hero be it a comic
book character, parent, doctor, teacher or
come as you are, but come join us as we
celebrate the all heroes among us!
Be sure to register online to help in
fundraising, tracking your team and enjoying
more prizes and chances to earn “Super
Hero Dollars.” We urge you to be a Super
Hero for the TS Alliance and Step Forward
to Cure TSC.
Step Forward to Cure TSC®
Nationally Sponsored By:
Julianne Moore, National
A
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TS Alliance of
Greater Alabama
TS Alliance of Delaware/
Lehigh Valley
Date: April 25, 2015
Location: Emmet O’Neal Library,
Mountain Brook, AL
Event Chairs: Carole Pitard and
Margaret Cox — ccpitard@yahoo.com
or margaretgcox@gmail.com
Date: May 2, 2015
Location: Gring’s Mill, Wyomissing, PA
Event Chair: Shelly Meitzler
mom2ashlin@yahoo.com
TS Alliance of Arizona
Date: April 18, 2015
Location: Eldorado Park, Scottsdale, AZ
Event Chair: Debora Moritz
deboramoritz@hotmail.com
Date: May 23, 2015
Location: Parc Hardy Park, Breaux
Bridge, LA
Event Chair: Katie Christensen
cajuncuties@outloook.com
TS Alliance of Atlanta/
North Georgia
TS Alliance of Greater
Chicago
Date: June 13, 2015
Location: Marietta Square, Marietta, GA
Event Chair: Becky Ruppe
arial2728@yahoo.com
Date: May 30, 2015
Location: Ty Warner Park, Westmont,
IL
Event Chair: Geri Greenberg
tscgreaterchicago@yahoo.com
TS Alliance of the Delta
Region
TS Alliance of the Carolinas
South Carolina
September 26, 2015
Location: Jarvis Creek Park, Hilton
Head Island, SC
Event Chair: Amy Bredeson
acbredeson@yahoo.com
TS Alliance of Houston
North Carolina
September 27, 2015
Location: Miller Park, Shelter 1,
Winston-Salem, NC
Event Chair: Gail Saunders
gsaunders@tsalliance.org
TS Alliance of Indiana
Date: May 2, 2015
Location: MacGregor Park, Houston,
TX
Event Chairs: Bill and Taska Fields
tfields54@msn.com
Date: May 16, 2015
Location: Billericay Park, Fishers, IN
Event Chair: Pat Schmutte
pschmutte@sbcglobal.net
TS Alliance of Connecticut
TS Alliance of
Intermountain West
Date: May 3, 2015
Location: Rotary Pavilion at Sand Hill/
Nevers Park, South Windsor, CT
Event Chair: Rebecca Thereault
Rebecca.flor@gmail.com
Date: September 26, 2015
Location: Liberty Park, Salt Lake City,
UT
Event Chair: Alisa Lambros
lambros.alisa@gmail.com
TS Alliance of the Dallas/
Ft. Worth Area
TS Alliance of Metro DC
National Walk on the Mall
Date: May 9, 2015
Location: Frisco Commons Park,
Frisco, TX
Event Chair: Joy Graydon
jgraydon10@hotmail.com
Date: June 6, 2015
Location: National Mall, Constitution
Gardens, Washington, DC
Event Chair: Brooke Carpenter
brooke_carpenter@hotmail.com
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Special Events
TS Alliance of Michigan
Date: June 13, 2015
Location: Granger Meadows Park,
Lansing, MI
Event Chair: Treasa Bolger-Dunlap
mtbolger@comcast.net
TS Alliance of New
England
Date: September 12, 2015
Location: Auburndale Park,
Auburndale, MA
Event Chair: Stacie Verrill
kscverrill@gmail.com
TS Alliance of Tennessee
Nashville
Date: June 6, 2015
Location: Two Rivers Park,
Nashville, TN
Event Chair: Kelly Vigil
Kelly.vigil@aarons.com
Memphis
Date: October 17, 2015
Location: H.W. Cox Park,
Collierville, TN
Event Chair: Brittany Schwaigert
Bschwaigert23@yahoo.com
TS Alliance of Rocky
Mountain Region
Date: June 13, 2015
Location: EB Rains Park, Northglenn,
CO
Event Chair: Leslie Byers
lbyers0401@gmail.com
TS Alliance of Southern
California
Date: May 16, 2015
Location: El Dorado Park – East, Long
Beach, CA
Event Chairs: Barb O’Neil and Dawn
Redfields
ibdolphindawn@aol.com
Circle of
Champions
The Step Forward
to Cure TSC Circle of
Champions program recognizes each
individual raising $10,000 or more at
one of the walks held nationwide. Each
candidate was entered in to a drawing for
a big screen TV. Congratulations to our
2014 Circle of Champions winner:
Renée Brown! Thank you to all of those
that qualified for this honor and worked
so tirelessly to make a difference in the
lives of those living with TSC including: Renée Brown
Cindy Chernow
Margaret Cox
Lori Day
Brandon Kocher
Noor Panjwani
Lisa Sanders
Heather Salvador
Robert & Denise Spear
TS Alliance of the Upper
Midwest
Date: June 7, 2015
Location: Central Park Lexington
East, Roseville, MN
Event Chairs: Maria Gibbons and
Judy Prudhomme: riau2@aol.com
Other Event
Success Stories
On behalf of the Tuberous Sclerosis
Alliance (TS Alliance), we want to thank everyone who joined us at our 40th Anniversary
Celebration in New York City on October
23, 2014. The evening was a smashing
success, raising more than $270,000 to
fuel the fight against tuberous sclerosis
complex (TSC), while also revering the past
and inspiring hope for the future.
We were honored to highlight the
significant contributions of Abe and Celia
Mastbaum and Drs. Jonathon and Bonnie
The Four Decades | One Community cast and production team.
Rothberg of The Rothberg Institute for
Childhood Diseases for their unending
passion and dedication to the TS Alliance
and TSC research.
Our wonderful and talented celebrity
friends brought our play, Four Decades |
One Community, to life as the showcase
of the event. It was a beautiful living
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Government Relations Update
Congress Approves
$6 Million for TSC
Research!
On December 13, 2014 the Senate
cleared the final fiscal year budget package for fiscal year 2015, known as the
“Consolidated and Continuing Appropriations
Act.” We are pleased to report that this
huge budget bill includes $6 million in
additional funding for the Tuberous Sclerosis
Complex Research Program (TSCRP) at
the Department of Defense. The House
had approved the measure two days earlier,
and the final budget package was signed
into law on December 16, 2014.
Once again, the TS Alliance faced
considerable odds during this tight fiscal
and election year political environment.
We could not have succeeded without
the bipartisan support that the TSCRP
receives in both the House and Senate.
This level and depth of Congressional
support did not happen by accident – it
has been fostered over several years of
dedicated advocacy from our nationwide
network of families and individuals affected
by tuberous sclerosis complex! Thanks
to more than a decade of advocacy, the
TSCRP has received since fiscal year
2002 a total of $59 million in funding
from Congress.
“March on Capitol
Hill” Scheduled for
March 4
The TS Alliance will once again organize our annual “March on Capitol Hill,”
scheduled this year for March 4. We
hope to communicate with every Member
of Congress about the importance of
continuing funding for the TSCRP. We are
also pleased our champions in Congress –
Representatives Loretta Sanchez (D-CA)
and Mike Fitzpatrick (R-PA) and Senators
Johnny Isakson (R-GA) and Chris Murphy
(D-CT) – will once again circulate “Dear
Colleague” letters expressing support for
funding the TSCRP in the fiscal year 2016
Defense Appropriations Act.
With a new Congress, difficult fiscal
times, and greater pressure to reduce the
Federal debt, it will be more important than
ever for friends and families to communicate
with their Members of Congress about the
importance of TSCRP research.
We hope you’ll join us in Washington,
DC on March 4 and take the opportunity to
meet with your Members of Congress and
their staffs. But you don’t have to come to
Washington, DC to make a difference, as
you can also participate in your local area.
To find out more, visit www.tsalliance.org/
ActionTeam today.
Message from the Leadership (continued)
tribute to her daughter, Tiara, including
how the Goffs planned for Tiara’s hospice
care. We appreciate Tiffani’s willingness
to share this difficult journey.
As you probably know, the TS Alliance
Board of Directors plays a huge role in
guiding the organization. On page 19, you
will find short biographies on new Board
members. We also want to sincerely thank
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Tu b e r o u s
the following outgoing members who worked
tirelessly on your behalf: Matt Bolger, Julie
Blum, Reiko Donato, Linda Jackson, Celia
Mastbaum, Mary Jane Mudd (Endowment),
John Nicholson and Judy Shoulak.
If you’re looking for an easy way to
get involved and make a true difference,
please consider joining our Government
Action Team for the upcoming “March on
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Capitol Hill.” You can read more about
it above.
In closing, we are honored to earn
a 4-Star Rating from Charity Navigator,
the nation’s leading charity “watchdog.” It
was a nice way to end 2014 and sets the
stage for future achievements. For more
information on the rating process and
its importance, please refer to page 20.
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My Earthly Journey with Tiara Has Ended
In Tribute to Tiara Goff October 27, 1998-January 15, 2015
BY TIFFANI GOFF
COVER STORY
S
ometimes as parents of a TSC
child we have to make some
tough decisions ; actually we
have to do it almost daily. Which medication do you think is working the best,
asks the neurologist? Should I bring her
to the Emergency Room for this status
seizure or should I give her another dose
of Diastat®? Should I try Afinitor®
for her kidney tumors or should I have
them embolized? Should I try the laser
surgery for her facial angiofibromas or
should I leave them alone? The decisions are never ending, and each one
is critically important to the health and
future of our children.
Recently, we had to make the decision to put our daughter, Tiara Goff,
on hospice. Because of tuberous
sclerosis complex (TSC), she had a
very extensive medical history, which
included intractable epilepsy, a brain
surgery that landed her in the hospital
for 3 months, innumerable tumors in the
kidneys, 3 tumors in her heart, chronic
pneumonia and respiratory problems,
autism, developmental delay and very
violent behaviors. For the past year of
her life, I knew she was fading away
from us.
After the second ICU visit in one
month, I started to realize it was time
to make some tough decisions. Was
she suffering? She was a shell of her
former self but had moments of joy and
happiness each and every day. Was it
really time to put her on hospice? Her
ICU doctors who saw her only when she
was inpatient mentioned something
to me earlier in the month, and I realized
they were hinting the time was coming
to decide how I wanted her to spend her
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Tiara and Tiffani Goff
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final days – in a hospital hooked up to
monitors or at home surrounded by her
family? Because all my grandparents
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passed away while on hospice at home,
I knew I wanted the same for Tiara. I
wanted her to be at home surrounded by
her family during her final days, weeks
or possibly months on Earth. So that is
what we did. We stayed in the ICU until
hospice was arranged, and we left the
hospital on December 31, 2014. Tiara
passed away on January 15, 2015.
The hospice team came to meet
with us and decided she only needed
to see the nurse once a week at this
point. My husband, Lou, and I decided
to cancel all the caretakers since she
hated when I left her with them and,
really, what errands did I have to do that
were so important at this point? NONE!
Lou shortened his work schedule to help
me take care of her, and friends started
bringing food for dinner. My mother-in-law
showed up every day instead of every other
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day to help me, and other
family members would visit
each day to help. Tiara no longer
liked visitors, loud talking or laughing
like she had before. It was clear her brain
was failing like a dementia patient, and
she was so anxious she couldn’t stand
too much activity going on around her.
One week before she passed, Lou came
home from work and I told him I needed
to take a walk. I hadn’t been outside in 2
days and it was really starting to get to
me. She heard me tell him I was going
for a walk, and the second I walked out
the door, she started asking him to go
on the trampoline. “Jump, Jump, Jump!” He convinced her to wait until I got home
because he knew I would freak out if he
took her on the trampoline since she could
barely walk. When I got home she started
asking again. She was very adamant about
going outside to jump. I knew she needed to jump one last
time so I said, “Let’s do it.” Her sister
Trinity walked out first, as Lou helped
support Tiara while she walked outside
and I followed with the oxygen tank. We
made a pit stop at the swing and while
she was catching her breath, we tried
to convince her swinging was enough
activity. Tiara wouldn’t hear it. She pulled
herself up and headed for the trampoline. Trinity got in first, Tiara followed with
Lou pushing her up, and then me. She
instantly started jumping and all 4 of
us held hands as she slowly went up
and down. I was praying the trampoline
wouldn’t break since we were doubling
the weight limitations but once again God
provided. She finished her jumping, and
we took a smiley, glowing girl safely back
inside the house.
A few days later, I called for the priest
to give her the Anointing of the Sick. It was
Sunday, January 11, and she was talking
so much and moving around he seemed
very confused as to why I had called him. She didn’t seem sick enough for him to be
performing the sacrament. I assured him
she was really that sick but he seemed
skeptical. Nevertheless he performed the
ceremony while Tiara kept interrupting him
to ask for her show. A
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The next morning I knew something
had changed. I called my family and told
them they needed to start coming over
every day. On Tuesday morning when my
brother-in-law visited, it was clear to him
she was in the final stages of dying. He
returned later with my sister and their
kids and from that moment on, the entire
family arrived and we sat vigil for Tiara. There were between 13 and 18 of us at
all times except when everyone else went
home to sleep. Tiara ate her last meal of humus and
crackers (her favorite snack) on Tuesday,
January 13 at 2:30 pm. She could barely
swallow and couldn’t walk at all. She
kept falling on her elbows when she
tried to crawl, and I was getting really
scared. The hospice nurse came over and
we decided to start sedating Tiara for her
own safety. Hospice usually likes to keep
the patient awake as much as possible,
but because Tiara refused to stay put
or stop eating, and yet couldn’t actually
get around safely, it was time. We tried
giving her Ativan® but it didn’t work well
enough. We then tried phenobarbital,
which started to work on calming her. We gave her a double dose at 7 pm, and
she shouldn’t have woken up again but
by some miracle she did. She woke up on the king-size bed she
shared with me and was surrounded by
her family. She reached her hand to the
headboard and started knocking. That was
the game she played with Lou every day. She would knock, and he would pretend
someone was at the door and he would
go answer it. She always thought she was
tricking him. She played that game with
the whole family for a few minutes and
then we started singing Happy Birthday
and pretending we were at her party. She
absolutely loved it. After about 10 minutes
she started to get upset, and I knew she’d
had enough. I kicked everyone out so I
could give her another dose of medication
rectally, and that was the last time we
heard her voice. On Wednesday we all took turns laying
by her head and feet and holding every
part of her body as we prayed for her to
pass. She was no longer wearing her
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oxygen and she was struggling to breathe. I
kept suctioning her to try and help with
the secretions but her body was shutting
down. At some point on Wednesday early
evening her soul left her body. I don’t know
the exact moment, but I just know that
when Tabitha (her other sister) and I slept
with her that night, we couldn’t feel her. It
wasn’t like it had been the prior nights when
I slept next to her, clinging to every ounce
of her being. As we watched her struggle
to breathe I sent a text to my family in the
morning telling them, “her soul is already
gone but her body has not finished the
process yet.” I hit send, I looked over at
her and she took her last breath at 8:18
am. She was gone.
I called the hospice nurse to let her
know, and she showed up a half an hour
later with an amazing art project for us. She brought a canvas and some paints. We all gathered around Tiara’s bed and
took her hand print, the one in blue,
centered in the middle. We then each
layered our own prints over and around
her’s in a different color. Mine was fushia,
Lou/green, Tabitha/orange, Trinity/aqua,
Grandma Cindy/lavender, Grandpa Jack/
blue, Nana/black, Auntie Heathie/ gold,
Uncle Chris/yellow, Cousin Indy/pink,
Cousin Izzy/navy and her favorite Cousin
Harry/ red.
We celebrated a mass for her on
Wednesday, January 21, 2015 and the
church was full. I think nearly 400 people
showed up to support Tiara and our family. It was truly incredible. I gave the eulogy
as my final gift to her and then we buried
her in the coolest turquoise casket you
have ever seen at Pacific View Memorial
Park in Corona del Mar. Lou and I already
bought the spaces next to her grave so
we will be buried with her when it is our
time to see her again in heaven.
Tiara will be forever missed, but I find
comfort in knowing her short time on this
Earth changed the lives of many people.
To read Tiara’s entire
journey, visit Tiffani’s blog
at www.tiffanigoff.com
7
Section 504:
Civil Rights Law You Should Know
BY DENA HOOK, VICE PRESIDENT OF OUTREACH, TS ALLIANCE
T
he term “504” comes from the
Rehabilitation Act of 1973 Section
504, which is a civil rights law that
states a student with a disability is entitled to an appropriate public education
the same as a child without a disability.
This law ensures children with disabilities
do not face barriers interfering with them
receiving an education.
Unlike the Individuals with Disability
Education Act (IDEA), which is an education law that mandates a student receive
the necessary educational supports and
services to progress in the general education
curriculum, the intent of a 504 is to prevent
discrimination in not providing equal access
to education.
Section 504 is more about accommodations than special education services. Many
students with tuberous sclerosis complex
(TSC) do not need special education and
support services and may not meet the
criteria for an Individualized Education
Program (IEP); they just need a few accommodations so they can participate in school
activities, such as:
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Seizure crisis plan
Air-conditioned classroom
Medication administered by an adult
Adult aide on the bus to help if seizures occur
• Allow time to make up work when
absent for medical reasons
• Adapt activity level for recess, physical
education class
• Additional time for completing work
assignments and/or exams
If a student has an IEP and during the
revaluation process (required tri-annually)
tests out of special education, a 504
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Plan should always be considered. Just
because a student tests out of special
education under IDEA does not mean
he or she doesn’t need support. To not
provide supports and accommodations
to a student who has always had support
services would be setting him/her up for
failure. It is also important to understand
that when students graduate high school
they no longer are covered under IDEA.
If a student is going on to college it is the
Rehabilitation Act of 1973 Section 504 that
follows them into college. All students on
IEPs under IDEA are also covered by 504,
but it is only the 504 plan that follows them
into post-secondary education.
A Section 504 Plan may cover anyone
with a disability who:
• has a physical or mental impairment
that substantially limits one or more
major life activities;
• has a record of such impairment; or
• is regarded as having such an
impairment.
Under 504 all students who qualify are
entitled to an appropriate public education,
even in college. Public schools/colleges are
required to provide an appropriate education
to students with disabilities who are:
• Of an age during which it is mandatory under state law to provide such
services to persons with disabilities;
• Of an age during which persons
without disabilities are provided such
services; or
• A person for whom a state is required
to provide a free appropriate public
education under IDEA.
A public agency that receives any
type of Federal funding is required to be
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in compliance with Section 504 to receive
it. All public agencies (public schools,
state colleges) are required to have a
504 Coordinator as well as policies and
procedures under Section 504.
The U.S. Department of Education
monitors and enforces Section 504 in
programs and activities that receive Federal
funding. Recipients of these funds include
public school districts, colleges, vocational
schools, and other state and local education
agencies (34 C.F.R. Part 104). The Office
for Civil Rights (OCR) has 12 enforcement
offices and a headquarters office in
Washington, D.C., to enforce Section 504
and other civil rights laws that pertain to
recipients of funds
Just because a student does not
meet the requirement for special education under IDEA (or graduates) does not
mean he or she won’t need support and
accommodations to succeed in school
and post-secondary options.
For more information on Section 504
and other topics related to school, please
visit www.tsalliance.org and click on “For
School Issues” in the navigation bar.
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TS Alliance Endowment Fund:
New Year’s Resolutions for Your Estate
A
new year is here, which has
many of us making resolutions
to improve our overall health.
Maintaining a healthy estate plan can
help ensure the well-being of your loved
ones. Consider setting the following
resolutions for your estate.
Update your plan. Through a new will
or revocable living trust – or a codicil or
amendment modifying your old documents
– you can address changes in your life,
save estate taxes and leave a legacy for
the future. Some examples:
Create a durable power of
attorney.
If you have had changes
This authorizes someone you choose
– perhaps your spouse or another trusted
family member – to handle your financial
affairs during your lifetime when you are
unable to do so.
to your family or financial
situation, you should
take another look at your
estate plan.
This empowers someone you choose to
make health care decisions on your behalf
if you are unable to make them yourself.
Your family.
Sign a living will.
With births, deaths, marriages or
divorces, you may want to add or delete
beneficiaries or increase or decrease their
shares of your estate.
Your property.
Events such as growth (or decline) in
the value of your estate, the acquisition of
a new home, or the sale or gift of property
may necessitate changes to bequest
provisions.
Your new location.
Your will should be updated if you move
to a new state. Different requirements for
the execution of a will as well as different
state inheritance taxes and probate laws
may make revisions necessary. Contact an
estate planning attorney in your new state.
Your charitable interests.
Will your good works continue after
your lifetime? Consider including a bequest
to the TS Alliance Endowment Fund by
designating a percentage of your estate
to us. Call us toll-free at 1-800-225-6872
for sample bequest language to use in
your will.
Review your choice of executor.
Recognizing the intricacies of estate
settlement, you may want to consider
a professional fiduciary for the role as
A
M a g a z i n e
f r o m
Execute a power of
attorney for health care.
t h e
Tu b e r o u s
co-executor to serve with your individual
executor. A professional fiduciary is an
individual or institution that acts as a
representative for the assets of others.
A fiduciary’s experience in saving taxes
and prudently managing investments can
be invaluable.
Look over the beneficiary
designations of your life
insurance, retirement plans
and IRAs.
A l l i a n c e
•
W I NTE R
20 1 5
Please consider
remembering the TS
Alliance Endowment Fund
in your estate plans.
Contact Lisa Moss at 1-800-225-6872
or lmoss@tsalliance.org to learn which
gifts are best for your particular situation.
These should be coordinated with your
overall estate plan to make sure your entire
estate is left the way you intend. If you want
to remember the TS Alliance Endowment
Fund in your plans, retirement assets are
the most highly taxed assets to leave to
your family, making them excellent
charitable gifts to
support our
mission.
S c l e r o s i s
This tells people what life-sustaining
medical treatment you want to receive, if
any, if you become terminally ill and can no
longer communicate your own decisions.
•
© The Stelter Company
The information in this publication is not intended as legal advice. For legal
advice, please consult an attorney. 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.
9
Honorariums (October 2014 – December 2014)
You can honor a friend or family member for an important occasion with a gift to the TS Alliance. It is a wonderful way to send
a birthday or anniversary wish, or congratulations for retirement, a job well done, graduation, etc. Please include the name and
address of the individual being honored so an acknowledgement of your kind donation can be sent. TS 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 thoffman@tsalliance.org.
Tribute(s) for Alexander P.
Ackerman
Mr. and Mrs. Doug Ackerman
Tribute(s) for Sarah Aguilar
Mrs. Diana Ryan
Tribute(s) for Henry Albers
Mr. and Mrs. James S. Tart
Tribute(s) for Rocco Alex
Ms. Marisa Antonini
Tribute(s) for Bridget
Alexander
Mr. and Mrs. Robert Peacock
Tribute(s) for Kristen A. Aller
Mr. Gordon L. Felger
Tribute(s) for Sophia Almeida
Mr. and Mrs. Virgil Spanier
Tribute(s) for Dan A. Anderson
Mrs. Cyndy Chesney
Tribute(s) for Missy L.
Anderson
Mrs. Cyndy Chesney
Tribute(s) for Albert Antin
Mr. and Mrs. Joseph Antin
Tribute(s) for Jacob Baker
Anonymous
Mr. and Mrs. Michael Baker
Mr. and Mrs. James T. Brown
Lewis Veterinary Clinic, PA
Tribute(s) for Nicklas
Bardelben
Mr. Erin Buero
Tribute(s) for Joshua Barrett
Mr. and Mrs. James Lowe
Tribute(s) for Xavier
Barr-Malec
Mr. and Mrs. Robert E. Newlin
Tribute(s) for Spencer
Bayless
The Bayless Family Foundation
Tribute(s) for Joshua P. Beck
Ms. Karen White
Tribute(s) for Gavin Berg
Mr. and Mrs. Jerome M. Hess
Tribute(s) for Rebecca L.
Berger
Mr. and Mrs. Scott Berger
Tribute(s) for Matthew Beyer
Ms. Lisa A. Beyer
Tribute(s) for Gary Bindler
Ms. Ellen Tarpey
Tribute(s) for Jacob Blood
Mr. and Mrs. William S. Blood, Sr.
Mrs. Miriam S. Green
Tribute(s) for Kristen A.
Bloomfield
Mr. and Mrs. Robert M. Jackson
Tribute(s) for Elyse Bodiford
Mr. and Mrs. Kirby Woodard
Tribute(s) for Layne Boesiger
Mr. Phillip Livengood
Tribute(s) for Matt W. Bolger
Mr. Dave Bird
Tribute(s) for Rachel Bolger
Ms. Alexander M. Simonica
Tribute(s) for Lance Bradford
Mr. and Mrs. Larry E. Bradford
Tribute(s) for Alex Brescia
Mr. and Mrs. David P. Wegener
Tribute(s) for Megan Bright
Mr. and Mrs. Thomas Ritter
Tribute(s) for Derrick Brown
Joseph M. Levine Foundation
Tribute(s) for Pascal Bruehler
Mr. and Mrs. Timothy P. Silber
Tribute(s) for Daniel L.
Buchsbaum
Mr. and Mrs. Andrew Buchsbaum
Mr. Peter Ostrow
Tribute(s) for Krista Bukowski
Ms. Audrey V. Bukowski
10
Tribute(s) for Christy C.
Buntrock
Mr. Steven Scuderi
Tribute(s) for Seth Burleson
Mr. and Mrs. Todd Burleson
Tribute(s) for Laina Cady
Holy Family Catholic School
Tribute(s) for Lillian Cahill
Ms. Robin Smith
Tribute(s) for Lyndsay
Cameron
Mr. and Mrs. John K. Fiorilla
Tribute(s) for Matthew
Campbell
Mr. and Mrs. John J. Murphy
Tribute(s) for Shelby L.
Campbell
Ms. Christine Campbell
Tribute(s) for Brennan Carroll
Anonymous
Ms. Christine Bento
Ms. Ingrid Carroll
Mr. Nicholas Clements
Ms. Catherine Dacre
Mr. William J. Dritsas
Mr. Eric E. Hall
Hanley Household
Ms. Teah Iosebashvili
Mr. Andrew McNaught
Ms. Karen Shepardson
Ms. Kathy J. Truesdale
Ms. Kristen Verrastro
Tribute(s) for Nathan P.
Carroll
Mr. and Mrs. John R. Carlson
Tribute(s) for Steven C.
Cazalas
Mr. and Mrs. Donald E. Cox
Tribute(s) for Cindy Chernow
Mr. Martin Goslins and Ms. Gale Udolph
Tribute(s) for Dan Chernow
Mr. Martin Goslins and Ms. Gale
Udolph
Tribute(s) for Elizabeth A.
Christensen
Ms. Kim R. Armstrong and Ms. Joyce
C. Armstrong
Tribute(s) for Brooks Clarkson
Mr. R.B. Eddins
Tribute(s) for Liam M. Coady
Mr. and Mrs. Thomas J. Coady
Tribute(s) for Elliot C. Cohen
Ms. Suzanne Hochberg
Tribute(s) for James M.
Coleman
Ms. Helen Coleman
Tribute(s) for Hannah Comeau
Mr. and Mrs. Carl Mielnicki
Tribute(s) for Maggie Conner
Todd Family Charitable Foundation
Tribute(s) for Maggie S.
Conner
Mr. Jordan Coleman
Tribute(s) for Douglas R.
Cooper
Mr. and Mrs. Johnny W. Mundy
Tribute(s) for Sarah A. Cooper
Mr. and Mrs. Stirling M. Cooper
Tribute(s) for Tommy Cox
Mr. and Mrs. Charles L. Anderson
Tribute(s) for Keenan J.
Creamer
Larry W. Grubryn
Mr. and Mrs. Terry McMullen
Tribute(s) for Charlotte
D’Amario
Mr. and Mrs. Thomas Milton
Tribute(s) for Olivia Elizabeth
W. Day
Mr. Michael Hogan
Tribute(s) for Cole Denharder
Mr. and Mrs. Cornelius DenHarder
Ms. Ada Visser and Ms. Linda
Denharder
Tribute(s) for Cody Dennis
Mr. and Mrs. Stephen Dennis
Keiter Family Foundation
Tribute(s) for Alexandra
Donato
Dr. MaryAnn Romski
Tribute(s) for Anne C.
Drennen
Mr. and Mrs. Edward Drennen
Tribute(s) for Rachel Emerson
Mr. and Mrs. James Emerson
Tribute(s) for Gregg Engles
Mrs. Patricia Shine
Tribute(s) for Kelli Erklin
Mr. Patrick Erklin
Tribute(s) for John W.
Fitzmaurice
Mr. and Mrs. David Fitzmaurice
Mr. and Mrs. Michael Flanagan
Tribute(s) for Luke Forsythe
Mr. and Mrs. Steven Carey
Tribute(s) for Jameson R. Fox
Mr. and Mrs. William J. McMahon
Tribute(s) for Matthew Fox
Mr. and Mrs. Mark Fox
Tribute(s) for Evan Frausto
Ms. Cheryl Peugh
Tribute(s) for William Gaillard
Mr. and Mrs. Matthew E. Price
Tribute(s) for Tristan Goetz
Mr. and Mrs. Thomas Goetz
Tribute(s) for Mike Gohl
Mr. and Mrs. Barry K. Retchloff
Tribute(s) for Meagan Golden
Mr. and Mrs. Michael T. Kelty
Tribute(s) for Bonnie E. Gould
Rothberg
Mrs. Lillian R. Rothberg
Tribute(s) for Evan Greenberg
Admedia Partners
Tribute(s) for Ryan Groves
Mr. and Mrs. John R. Eifert
Mr. and Mrs. Robert W. Groves III
Tribute(s) for Mary Hable
Mr. and Mrs. Vernon R. Schlosser
Tribute(s) for Jade C. Hahn
Bayonne Glass Co.
Tribute(s) for Nicholas S.
Hapstack
Mr. and Mrs. Thomas A. Chandler
Tribute(s) for Avery Hart
Ms. Kendra Bloomquist
Mr. and Mrs. Barrett A. Cunningham
Mr. and Mrs. DJ Delgado
Mr. and Mrs. Michael Dorcey
Mr. and Mrs. Dirk Haegert
Mr. and Mrs. Oscar Macias
Mr. and Mrs. P.J. Marstall
Ms. Ann K. North
Mr. and Mrs. Jason Pankratz
Mr. Michael Robinson
Mr. and Mrs. Chris W. Roth
Mr. and Mrs. Richard C. Scheve
Ms. Janice Spade
Mr. and Mrs. William J. Sweet
Mr. and Mrs. Mike Wysocki
Tribute(s) for Deborah
Hawkins
Mr. and Mrs. Neil C. Hawkins
Tribute(s) for Bao Heffron
Mr. and Mrs. William C. Cooke
Mr. and Mrs. Lawrence Perko
Tribute(s) for Erin Hensley
Mr. and Mrs. John W. Hensley
Tribute(s) for Shawn Higgins
Mr. and Mrs. Robert E. Higgins
P ER SP ECT I V E
•
Tribute(s) for Mathew Hillier
Mr. and Mrs. William Gates
Mr. and Mrs. Lewis F. Lipkin
Mr. and Mrs. Ernest L. Sandor
Tribute(s) for Graham Hobbs
Ms. Rosetta Graham
Tribute(s) for Elise Hoersch
Mr. and Mrs. Jeffrey S. Hoersch
Mr. and Mrs. Jon F. Myers
Tribute(s) for Emily M.
Holinka
Mr. and Mrs. Doug Eischens
Ms. Allison Weitzel
Tribute(s) for David E. Hollan
Mr. and Mrs. Glen L. Flurry
Tribute(s) for Shelley Hollan
Mr. and Mrs. Glen L. Flurry
Tribute(s) for Joseph Hopkins
Mr. and Mrs. James S. Brown
Tribute(s) for Trevor Hulbert
Dr. John C. Hulbert and Dr. Alice
Hulbert
Tribute(s) for Ty Hurst
Mr. and Mrs. Dwight O. Moberly
Tribute(s) for Ben Hutchinson
Mistler Family Foundation
Mr. Michael S. Richards and Ms.
Priscilla Richards
Tribute(s) for Kevin Jackson
Mr. and Mrs. Max Toberoff
Tribute(s) for Ariana James
Mr. James Rinehart and Ms. Susan
Goode
Tribute(s) for Hannah Jeffers
Mr. and Mrs. Keith A. Gaskill
Tribute(s) for Stephanie
Johns
Ms. Anastasia Buccino-Roth
Tribute(s) for Annie Johnson
Altalib Family Limited Partnership
Mr. Louis Alvis
Mr. Philip M. Anders
Mr. and Mrs. Clarence Bielawski
Mr. Joseph A. Deblasio
Downey Publishing, Inc.
Mr. Michael S. Durrant
Mrs. Fay Godman
Mr. and Ms. Robert Graham
Ms. Marlene Grim
Mr. Larry R. Gsellman
Mr. and Mrs. Hyunsook Highland
Mr. and Mrs. Frank Holzman
Mr. and Mrs. Henry J. Hribar, Jr.
Mr. Bruce C. Janovsky
Mr. and Mrs. Lawrence C. Johnson
Ms. Sarah K. Jones
Mr. and Mrs. Arnold W. Kamm
Mr. and Mrs. James J. Kovalsky
Mr. and Mrs. James W. Krueger
Mr. and Mrs. Walter P. Lysaght
Mr. and Mrs. James C. Malone
Mr. Blaine S. Merritt
Ms. Marilyn Modjeski
Mr. and Mrs. James J. O’Halloran
Pfizer Foundation Matching Gifts
Program
Mr. and Mrs. Carleton F. Rosenburgh
Nancy Shuba-Merritt
Mrs. Karen Singer
Mr. and Mrs. William Sturm
Ms. Marie Sullenberger
Mr. and Mrs. W.N. Young
Tribute(s) for Ken Johnson
Mr. and Mrs. Robert Kanne
Tribute(s) for Shonnie
Johnson
Mr. and Mrs. Robert Kanne
Tribute(s) for Kendall Kesig
Mr. and Mrs. Gary Kesig
Ms. Marilyn Swisher
W I NTE R
20 1 5
•
A
Tribute(s) for Tomasean Kesig
Mrs. Amanda L. Carter
Tribute(s) for Samantha Kieny
Mr. and Mrs. Thomas J. Reimann
Tribute(s) for Ken Kluender
Mr. and Mrs. Tim Burchett
Tribute(s) for Crystal Knotts
Ms. Joan E. Knotts
Tribute(s) for Brandon Kocher
Mr. and Mrs. Timothy Senger
Tribute(s) for Jackson
Kozisek
Mr. and Mrs. Barry L. Allen
Tribute(s) for Cathy J. Krinsky
Mr. and Mrs. P. Allen Krause
Ms. Eva Monastersky
Tribute(s) for David A. Krinsky
Mr. and Mrs. P. Allen Krause
Tribute(s) for Lauren E. Krinsky
Mr. James E. Berger
Ms. Nancy J. Dolinar
Tribute(s) for Gavin Langston
Mr. and Mrs. Joe Cappadona
Tribute(s) for Kolten Larson
Mr. and Mrs. David J. Kaus
Tribute(s) for Brianna LaVoun
Mr. Arthur Asgian
Mr. and Mrs. Edward V. Capoziello
Ms. Kathryn M. Chand
Mr. and Mrs. Howard Haugen
Tribute(s) for Alison Lawless
Ms. Kathleen Djenfer
Tribute(s) for Catherine
Lawless
Ms. Kathleen Djenfer
Tribute(s) for Eiten Levinstein
Ms. Mildred Baylin
Tribute(s) for Vernon Lew
Mr. and Dr. Paul Seward
Tribute(s) for Wanda Lew
Tribute(s) for Patrick Lewis
Mr. and Mrs. Thomas P. Curtin
Tribute(s) for Josephine
Liddle
Mr. Robert Wyckham
Tribute(s) for Hannah Linsin
Frank and Fay Katlin Family
Foundation
Mrs. Muriel Pattis
Renaissance Charitable Foundation,
Inc.
Tribute(s) for Ellyn A. Lubbers
Mr. and Mrs. Daniel J. Diephouse
Mr. and Mrs. Mark Dykstra
Tribute(s) for Maria Lubrico
General Paving and Construction
Corp.
Tribute(s) for Nicholas F.
Lyons
Mr. and Mrs. Alfred Garzino Jr.
Mr. George Snedeker
Tribute(s) for Phillip Macri
Mr. and Mrs. Dorrance P. Howland
Mr. and Mrs. Roger Wilson
Tribute(s) for Jacqueline
MacVicar
Mr. and Mrs. Terry Carroll
Tribute(s) for Ashley
Marchese
Anonymous
Tribute(s) for Halle Marshall
Ms. Carol Sherman
Tribute(s) for Lucas Martin
Ms. Linda Arlinghaus
Tribute(s) for Tyler R. Martin
Mrs. Sheree Martin
Tribute(s) for Abe Mastbaum
Ms. Delia George
Paragraphics, Inc.
M a ga z i n e
fr o m
Gary and Bobbi Rafaloff
Mr. and Mrs. Lawrence Tenenbaum
Tribute(s) for Celia W.
Mastbaum
Ms. Delia George
Paragraphics, Inc.
Gary and Bobbi Rafaloff
Mr. and Mrs. Lawrence Tenenbaum
Tribute(s) for Genie
Matthews
Mrs. Julia D. Webb
Tribute(s) for Payson
Matthews
Mrs. Amy Winfrey
Tribute(s) for Megan Mauro
Mr. and Mrs. Steve Mauro
Tribute(s) for Sophia
Mayrsohn
Florida Welding Fabricators &
Erectors, Inc.
Mr. and Mrs. Jacques J. Morcos
Tribute(s) for Ashlin
McFadden
Ms. Kathy Baisch
Mr. and Mrs. Charles McFadden
Tribute(s) for Brandy
McQuillen
Ms. Valerie S. Hause
Tribute(s) for Nathan A. Mehrer
Mr. and Mrs. Joe U. Carrillo
Tribute(s) for Mason Meitzler
Ms. Kathy Baisch
Tribute(s) for Yvonne C.
Melvin
Mr. and Mrs. Gary L. Caldwell
Tribute(s) for David Michaels
DoTopia
Tribute(s) for Davya Miller
Ms. Sally R. Parry
Tribute(s) for Rylee Mischel
Mrs. Faith Golden
Tribute(s) for Nadra
Mlynarczyk
Dr. and Mrs. Gregory W. Baird
Mrs. Ashley Hynes
Mr. and Mrs. Richard D. Olson
Mr. and Mrs. Clayton E. Spence
Tribute(s) for Zoe Montaigne
Ms. Janet Hague
Tribute(s) for Lindsay Moody
Ms. Lise McLean
Tribute(s) for Ethan
Moseanko
Ms. Jeanette Register
Tribute(s) for Aiden Myers
Mr. and Mrs. Philip Myers
Tribute(s) for Mason
Newberry
Mr. Jackson Newberry
Tribute(s) for John Nichols
Mr. and Mrs. Norman Barth
Tribute(s) for Lauren Niemeyer
Mr. and Mrs. Michael and Kristina
Niemeyer
Tribute(s) for Hayley Noakes
Mr. Walter T. Leech
Mrs. Stephanie Shorette
Tribute(s) for Parker
Northrup
Mr. and Mrs. Howard Mullis
Ms. Margaret Northrup
Tribute(s) for Stella O’lear
Mr. and Mrs. Matt Olear
Mr. and Mrs. Thomas A. Olear
Ms. Carolyn S. Rusk
Tribute(s) for James E. Oliver
Mrs. Mary J. Oliver
Mr. and Mrs. Bernard Wendt
Tribute(s) for Kenneth J. Olivo
Mr. and Mrs. Kenneth Olivo
th e
Tube ro us
Tribute(s) for Courtney
O’Malley
Ms. Laura Coleman
Ms. Jennifer Greenman
Mr. and Mrs. Paul Jensen
Tribute(s) for Jeremy Orr
Mrs. Marcia Orr
Tribute(s) for Stephanie
Otani
Ms. Pauline Martin
Mrs. Kiyoko Maruyama
Tribute(s) for Grant Parker
Mr. and Mrs. Arnold D. Witherspoon
Tribute(s) for Eric Parkes
Mr. and Mrs. Gerald Friedman
Mr. and Mrs. Jeffrey J. Siegel
Mr. and Mrs. Michael Steinberg
Tribute(s) for Jack S. Parry
Mr. and Mrs. Richard S. Parry
Tribute(s) for Patricia J.
Parsons
Mrs. H. Patricia Hurka
Tribute(s) for Muriel Pattis
Frank and Fay Katlin Family
Foundation
Ms. Diane S. Mittenthal
Tribute(s) for Emilie N.
Peters
Mr. and Mrs. David Peters
Tribute(s) for Paige Pfeiffer
Mr. and Mrs. Bill Pfeiffer
Tribute(s) for Peyton Phillips
Mr. and Mrs. Gary L. Cates
Tribute(s) for Grace Pickard
Mr. and Mrs. Robert Goble
Tribute(s) for Edgerrin
Piechocki
Mr. and Mrs. Donald Berg
Tribute(s) for Will Piotrowski
Mr. and Mrs. William K. Carruth
Tribute(s) for Rachel Plavin
Ethel Reiss
Tribute(s) for Lucy Poff
Mr. Sam Poff and Ms. Wilma
Luersen
Tribute(s) for Brandon
Pointer
Mr. and Mrs. Bernard J. Pointer
Tribute(s) for Michael
Pollard
Ms. Theresa S. Pollard
Tribute(s) for Cynthia
Pompeo
Ms. Helen M. Gorman
Barbara G. Harris
Tribute(s) for Ronny Pompeo
Ms. Helen M. Gorman
Barbara G. Harris
Tribute(s) for Jack Poutasse
Mr. and Mrs. Steven A. Lerman
Tribute(s) for Elijah M. Price
Dr. and Mrs. Alan Kushner
Tribute(s) for Thomas J.
Quinn
Mr. and Mrs. Thomas Madden
Tribute(s) for Sarah Quintana
Ms. Shirley L. Stafford
Tribute(s) for David Ram
Dr. and Mrs. Dasarathi Ram
Tribute(s) for Anthony
Rasavage
Mr. and Mrs. Mark Rasavage
Tribute(s) for Judy Ratner
Mr. Eric Broder
Mrs. Allison M. Feldman
Mrs. Hilary Nimons
Tribute(s) for Martha Ratner
Ms. Constance T. Baron
Tribute(s) for Faith Rentar
Mr. Mark Koscielak
S c l e ro s i s
Alliance
Tribute(s) for Allyson Rhodes
Smyser Auto Sales, LLC
Tribute(s) for John “Thorpe”
T. Richards
Mr. Robert P. Trout and Ms. Janet
Studley
Tribute(s) for Pamela A.
Richardson
Ms. Susan White
Tribute(s) for Will Richter
Mrs. Kathleen Long
Tribute(s) for Christine
Ritchie
Mr. and Mrs. Nicholas Carbonaro
Tribute(s) for Colleen Rivers
Mr. and Mrs. Charles Rivers
Tribute(s) for Jonathan M.
Rothberg
Mrs. Lillian R. Rothberg
Tribute(s) for Grace Rubeck
P&R Auto Body
Mr. and Mrs. Brad J. Rubeck
Ms. Alma J. Rubeck-Di Luciano
Mr. Glenn T. Stevenson
Tribute(s) for Randy Rust
Mr. and Mrs. Jim Joyce
Tribute(s) for Kaitlyn R.
Sabedra
Ms. Paula Knight
Mr. John H. Sabedra
Tribute(s) for Ryder Schalich
Mr. and Mrs. Dennis Misner
Tribute(s) for Carter Schmidt
Ms. Patti Fox
Tribute(s) for Stephen
Schmidt
Mr. and Mrs. Ronald D. Morris
Mr. and Mrs. Jack M. Olson
Tribute(s) for Cole Schulze
Ms. Julie Schulze
Tribute(s) for Brenna Scott
Mr. and Mrs. Jack Hyder
Tribute(s) for Kylie
Seggerman
Mr. and Mrs. Bob Glick
Tribute(s) for Erika Seward
Tribute(s) for Robert A.
Seymour
Business Knowledge Services, Inc.
Tribute(s) for Benjamin
Shapiro
Mrs. Carol D. Hobart
Tribute(s) for Bianca Sharp
Ms. Gretchen Olson
Tribute(s) for Judy A. Shoulak
Ms. Elizabeth Warner
Tribute(s) for Joshua J. Shoup
Sacco Simple Foods
Tribute(s) for Selma
Silberstein
Mr. and Mrs. Stanley Worton
Tribute(s) for Meghan J.
Sirinek
Mr. Thomas J. Krieg
Tribute(s) for Ainsley G.
Skelton
Mr. and Mrs. Jesse Wilson
Tribute(s) for Charlotte Skillin
Mr. H. Paul Buckingham
Mr. and Mrs. Tom Skillin
Tribute(s) for Drew Sklarin
Mr. and Mrs. Neil S. Fisher
Tribute(s) for Olivia Smiley
Mr. and Mrs. Robert E. Apple Jr.
Ms. Christine Delao
Mr. Emanuel C. Hoover
Insulation Products Corp.
Tribute(s) for Chloe Smith
Ms. Lara Robinson
Tribute(s) for Emma Smith
Ms. Nicole Addis
Mr. and Mrs. George Corcoran
Ms. Joann Gray
Ms. Maryann Johnson
Mr. and Mrs. Dennis O’Leary
Tribute(s) for Samantha
Smith
Mr. Frank Stovall
Tribute(s) for Trent Sphar
Mrs. Dorothy Ruggles Stern
Tribute(s) for Rocco Spinoso
Mrs. and Mr. Carmela Spinoso
Tribute(s) for Danielle
Stammelman
Mr. Ed Garcia and Ms. Judy Sutter
Tribute(s) for Julia Steenman
Mr. and Mrs. Gerard Steenman
Tribute(s) for Carson Steiner
Mr. and Mrs. Rick Bennett
Mrs. Robin Steiner Rose and Mr.
Jeff Rose
Tribute(s) for Jarrod D.
Stewart
Ms. Carol A. Oldenburg
Tribute(s) for Adelyn Stubanas
Mr. James Heacock
Tribute(s) for Adam Sullivan
Mr. John Thompson Jr.
Tribute(s) for Chelsea
Summers
Mr. and Mrs. Robert Hess
Tribute(s) for Emily B.
Szilagyi
Mr. and Mrs. Peter G. Schulam
Mrs. Ann Wilson
Tribute(s) for Will Taylor
Mr. and Mrs. Richard Gilmore
Mrs. Carol Handy
Mr. and Mrs. Francis X. McDonald
Mr. and Mrs. Andrew Mitala
Tribute(s) for Ethan Teachey
Fidelity Charitable Gift Fund
Thiele
Arlyn J. Roffman
Tribute(s) for Damon Toroian
Mr. and Mrs. Douglas Raymond
Tribute(s) for Michelle I.
Torres
Mr. Clyde C. Bueno
Tribute(s) for Tyler J. Trapp
Mr. and Mrs. Donald Hauge
Tribute(s) for Andrew R.
Trundle
Mr. and Mrs. Randy E. Hazard
Mr. and Mrs. George R. Trundle
YourCause, LLC
Tribute(s) for Jane Ulwick
Mr. Dave Colclough
Tribute(s) for Michael Ulwick
Mr. Brett D. Heineman
Tribute(s) for Russell Ulwick
Mr. Dave Colclough
Tribute(s) for Michael Valdez
Mrs. Elissa Romero
Tribute(s) for Adrienne
Valenti
Ms. Martha Dubois
Tribute(s) for Jase W.
Vasilovich
Anonymous
Tribute(s) for Theresa L.
Vertrees
Ms. Renae Bailey
Mr. and Mrs. Dana McMahan
Ms. Ruth Redel
Tribute(s) for Riley Vogel
Mr. and Mrs. Douglas J. Van Dyke
Ms. Lisa A. Yesse
Tribute(s) for Heather
Wachter
Mr. and Mrs. Ronald D. Wachter
Tribute(s) for Ryan Wade
Buttery Company, LLP
PDI
Tribute(s) for Marlisa
Wangsness
Mrs. and Mr. Barbara L. Montgomery
Tribute(s) for Jeb Ward
Mr. and Mrs. T. Robert Ward Jr.
Tribute(s) for Adrienne
Wasserman
Ms. Janet Platt
Tribute(s) for Daniel
Wasserman
Mr. Ed Confino
Tribute(s) for Will Wasserman
Ms. Marcia Leonard
Tribute(s) for Howard Weiner
Ms. Robin Smith
Tribute(s) for Meghan G.
Weingarth
Mrs. Jennifer R. Schillig
Tribute(s) for Oliver Weitz
Mrs. Jean Jansons
Mr. and Mr. Peter Jansons
Mrs. Marie Meehan
Tribute(s) for Gabriel White
Mrs. Deana Fondren
Tribute(s) for Amanda
Wiezalis
Mr. and Mrs. William P. Stebbins
Tribute(s) for Ashley Wiezalis
Mr. and Mrs. William P. Stebbins
Tribute(s) for Allan P. Wilson
Mrs. Audrey Bernstein
Tribute(s) for Ava Wolf
Mrs. Jennifer Strasser
Tribute(s) for Malarie
Wolthuis
Mr. and Mrs. David A. Brown
Mrs. Gabrielle Weston
Tribute(s) for Tyler Wooer
Mr. and Mrs. James D. Mitchell
Tribute(s) for Colin Yokoyama
MW Group, Ltd.
Tribute(s) for Alyssa Youmans
Accurate Automotive, Inc.
Mr. Nell Alexander
Ms. Sandy Alexander
Mr. and Mrs. Arthur A. Antiporda
Ms. Christina Baik
Mr. Michael E. Bailey
Ms. Janet Berry
Mr. and Mr. Andrew Bistline
Mr. and Mrs. Robert B. Bradley
Ms. Luellen Casler
Mr. and Mrs. V Crenshaw
Mr. and Mrs. G. C. Davenport
Mr. and Mrs. Randy S. Dirks
Mr. and Mrs. Thomas Elliott
Mr. and Mrs. David J. Evancheck
Mr. and Mrs. Charles E. Ferrell
Mr. and Mrs. William S. Finley
Mr. and Mrs. John Frahlich
Mr. and Mrs. Douglas C. Fuit
Mr. and Mrs. Glenn T. Gaffney
Mr. and Mrs. Kevin Gaffney
Mr. and Mrs. Thomas S. Gaffney
Mr. and Mrs. Dave E. Glass
Mr. and Mrs. Douglas J. Glass
Mr. and Mrs. John W. Goff
Mr. and Mrs. Kenneth G. Grimes
Mr. and Mrs. John M. Groom
Ms. Corlyn L. Hale
Ms. Sherry A. Hike
Mr. and Mrs. Daniel Hoffmann
Ms. Beth Hubbard
Ms. Joyce J. Hyden
Mr. and Mrs. George T. Keyes
Mr. and Mrs. Tim Kilgannon
Ms. Diane Klinkerfues
Mr. and Mrs. John Knestis
Mr. and Mrs. James P. Konrad
Mr. Jeff S. Kramer
Mr. and Mrs. David L. Kruse
Ms. Marilyn E. Lembcke
Ms. Karen Martin
Mr. and Mrs. Stephen R. Mason
Mr. and Mrs. Rory T. Peachey
Ms. Peggy L. Potter
Mr. and Mrs. Philip P. Rhodes
Mr. and Mrs. R. Rimbert
Mr. and Mrs. J. C. Robb
Mrs. Lynne O. Robbins
Ms. Jennifer L. Roswell
Ms. Tanya Scherer
Dr. and Mrs. Floyd T. Sekiya
Shawn Gaffney Memorial Fund
Mr. and Mrs. Gary P. Shrader
Ms. Mari M. Skora
Ms. Kathleen J. Smith
Ms. Jennifer A. Stuerke
Ms. Hannah D. Tenneson
Mr. and Mrs. Otto Wilson
Mr. and Mrs. Gerald P. Youmans
Mrs. Jacqueline Youmans
Mr. and Mrs. Bill A. Youmans
Mr. and Mrs. Stanley R. Youmans
Mr. and Mrs. William A. Youmans
Ms. Kathleen Zimmer
Mr. Mark S. Zimmer
Tribute(s) for John Zarbetski
Ms. Elizabeth McInnis
Mrs. Pearl A. Yaszczemski
Tribute(s) for Paul Zarbetski
Ms. Elizabeth McInnis
Mrs. Pearl A. Yaszczemski
Memorials (October 2014 –December 2014)
Contributions are given to the Tuberous Sclerosis Alliance at the request of family members in memory of their loved ones. We
extend our sympathies to the family and friends of those memorialized below. These generous contributions support the progress
of our mission to find a cure for tuberous sclerosis complex.
Tribute(s) for Lois Altman
Mr. and Mrs. Ron Smith
Tribute(s) for Douglas E.
Anderson
Tribute(s) for Butch
Arlinghaus
Ms. Linda Arlinghaus
Tribute(s) for Mary Arnold
Ms. Agnes Love
Tribute(s) for Kathryn
Atanasoff
Mr. and Mrs. Stanley Atanasoff
Tribute(s) for Dulla Athenais
Mr. and Mrs. Daniel P. Barrows
Tribute(s) for Earnest Balken
Mr. and Mrs. Earnest Balken
Tribute(s) for Jack Beard
Mr. and Mrs. Dave Hines
Mr. Harold M. Martin and Ms. Marie
C. Block
Mr. and Mrs. Ronald McGuire
Mr. and Mrs. Brad R. Vandenberg
Tribute(s) for Frances Blau
Jewish Community Foundation of
Central New York, Inc.
Tribute(s) for David Brandon
Tribute(s) for Heather J.
Buntrock
Mr. and Mrs. Damien L. Amore
Aramark Global Business Services
Ms. Carol A. Awe
Bassett Auto Repair, Inc.
Mrs. Bernard Beem
Mr. and Mrs. W. Wayne Beem
Mr. and Mrs. George J. Black
Mr. and Mrs. Carl Breitlow
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f r o m
Mr. and Mrs. Loren Buntrock
Mr. and Mrs. Gordon Buntrock
Mr. and Mrs. Paul Buntrock
Mr. and Mrs. Michael D. Coleman
Mr. and Mrs. Myron Dagley
Mr. and Mrs. Dennis F. Debennette
Mr. and Mrs. Jerry Dunnick
Ms. Patrice L. Elacqua
Ms. Kathleen Evert
Forhever Builders, LLC
Mr. and Mrs. Harold W. Frush
Mr. and Mrs. Steven M. Gunderson
Dr. Cecelia Harris
Mr. and Mrs. Stephen W. Hatch
Heather Joy Memorial Fund
Mr. and Mrs. Tim Heeter
Mr. and Mrs. Timothy Heeter
Ms. Shirley Hill
Mr. MIchael Jensen
Jim Burke Excavating, Inc.
Mr. and Mrs. Brian Lother
Mr. and Mrs. Brian E. Melin
Mr. and Mrs. Jacob Melka
Modern Heating Company
Mt. Olivet Memorial Park, LTD
Olson Comfort Services, Inc
Mr. and Mrs. Robert Paster
Mr. and Mrs. A Paxton
Mr. and Mrs. Thomas R. Rice
Richmond Motor Sales
Mr. and Mrs. Thomas J. Robers
Ryan Sullivan Agency
Mr. Steven Scuderi
Ms. Tabitha Sheen
Mr. and Mrs. Jeffrey F. Smith
Mr. and Mrs. Larry A. Stevens
Mr. and Mrs. William W. Sultan, Jr.
Mr. and Mrs. Richard Walker
t h e
Tu b e r o u s
Ms. Shirley A. Westerlund
Tribute(s) for Jake T. Burhoe
Mr. Timothy Blankenship
Tribute(s) for Charles
Cantrell
Tribute(s) for Eva L. Choberka
Mr. Christopher Ryan
Tribute(s) for Matthew Colby
Mr. and Mrs. Gerry Colby
Tribute(s) for Richard
Connors
Ms. Linda G. Connors
Tribute(s) for Chester R.
Dolan
Ms. Ann C. Sherwood
Tribute(s) for Robbie Dolan
Mrs. Margaret Dolan
Tribute(s) for Ryan Epplin
Mr. Jamie L. Reidelberger
Tribute(s) for John Fechino
Tribute(s) for Michael Ford
Mr. Kenneth D. Arndt
Ms. Kimborly Ditto-Ehlert
Kotz Sangster Wysocki, PC
Tribute(s) for Ronnie Frazier
Tribute(s) for Lucas S.
Garbutt
Ms. Gloria L. Garbutt
Tribute(s) for Andrew J.
Geljookian
Mr. and Mrs. George P. Quinn, Jr.
Tribute(s) for Irene Glover
Mr. and Mrs. Gerald Friedman
Tribute(s) for Matthew Gritti
Ms. C Maureen Gerogosian
S c l e r o s i s
Tribute(s) for Dorothea
Grolnic
Mr. and Mrs. Martin Grolnic
Tribute(s) for Larry Hauge
Tribute(s) for Lois M. Hogan
Dr. Marguerite Brackley
Mr. Michael Hogan
Tribute(s) for Tom Hopper
Tribute(s) for Wendy Houston
Tribute(s) for David Howell
Mr. and Mrs. James R. Trimm
Tribute(s) for Dean A.
Hudson
Ms. Chris M. Peek
Tribute(s) for Harriet Kandel
Tribute(s) for Andrea Kebbel
Mr. and Mrs. Paul A. Firetto
Tribute(s) for Gwen
Krecklow
Anonymous
Mr. John C. Dean
Mr. and Mrs. David R. Krecklow
Mr. and Mrs. William Northrop
Tribute(s) for Marianne
Kreiger
Anonymous
Mr. and Mrs. Robert C. Coover
Mr. and Mrs. Robert M. Gleason
Ms. Susan B. Goldrick
Mr. Robert S. Hamilton
Mr. and Mrs. William W. Jennings
Ms. Carolyn Kunkel
Mrs. Joan Saggers
Mr. and Mrs. David Shames
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Ms. Patricia Sullivan
Tribute(s) for Peter La Forte
Ms. Joan Dionne
Tribute(s) for Gerald LaVoun
Mrs. Mary E. Knox
Mr. Andrew A. Mitchell
Tribute(s) for Therese M.
Lewis
ITW Foundation Matching Gift
Program
Tribute(s) for Mica
Livingston
Mr. and Mrs. Robert G. Sloan
Tribute(s) for Sherril A.
Malesky
Mrs. Audrey Malesky
Tribute(s) for Sheila Marton
Mr. and Mrs. Richard Beldner
Dr. Herbert Marton
Mr. and Mrs. Stuart Marton
Mr. and Mrs. Peter Rapaport
Tribute(s) for Bennie Massey
Tribute(s) for Kenneth J.
Meade
Mr. George N. Georgeles
Mrs. Kathryn Graciano
Ms. Mary Rose T. Meade
Morris
Tribute(s) for Brian Niles
Mr. and Mrs. Donald H. Niles
Tribute(s) for James W.
Oliver
Mr. and Mrs. Edward D. Stone
Tribute(s) for Janet Olson
Thomson Reuters
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Tribute(s) for Robb Palmer
Mr. and Mrs. Stanley J. Dickinson
Tribute(s) for John Parisher
Buttery Company, LLP
Ms. Melissa Friedman
Ms. Lorri Haden
PDI
Kim Peck
Tribute(s) for Doris A. Parks
Tribute(s) for Rachel
Pasquale
Ms. Kathleen M. Palmer
Tribute(s) for William Poe
Funal
Tribute(s) for Steve Pryor
Tribute(s) for Glenna M.
Rivers
Mr. and Mrs. Norman Basher
Tribute(s) for Micheal P.
Rovey
Mr. Herman Rovey
Ms. Roberta Rovey
Tribute(s) for Sue M.
Ruocco
The GE Foundation
Tribute(s) for Adam G. Scott
Mr. and Mrs. Robert T. Scott
Tribute(s) for Evelyn Scott
Tribute(s) for Royden Seller
Tribute(s) for Claire L.
Siegel
Karen Siegel, PhD
Tribute(s) for Laverne
A. Sima
Mr. and Mrs. Stephen M. Bauer
Mr. and Mrs. Mark Bennecke
Mr. and Mrs. Kevin Patton
Tribute(s) for Giles Slade
Dr. Raymond Chan
Tribute(s) for Robert P.
Steffens
Mrs. Judith A. Steffens
Tribute(s) for Jordan J. Vas
Mrs. Michelle Vas
Tribute(s) for RJ Vas
Mrs. Michelle Vas
Tribute(s) for Anthony Viola
Mrs. Chris Viola-Weiss
Tribute(s) for Sam Von Lintel
Mr. and Mrs. Mark A. Junk
Tribute(s) for John W.
Wessler
Mr. James N. Huckabay
Ms. Laura K. Ridenour
Tribute(s) for Greg Wilson
Mr. and Mrs. K. Robert Evenson
Tribute(s) for Nicholas T.
Wolthuis
Mr. and Mrs. David A. Brown
Mrs. Gabrielle Weston
Mr. and Mrs. Charles T. Wolthuis
Tribute(s) for Lora L.
Woodward
Ms. Donna W. Woodward
Tribute(s) for William Wright
Tribute(s) for Roland
Youmans
Mr. and Mrs. Stanley R. Youmans
11
ADULTS WITH TSC CORNER
The Long Journey
BY THERESA VERTREES
I
softball and watched baseball, both of
am fifty years old and have been marwhich thelped me a great deal when at
ried twenty-one years. We have no
night I felt like going crazy.
children. I came from a large family.
Three of the ten doctors and specialMy story starts in the early 1960s. I
ists I saw as a child thought I had autism.
had convulsions when I was a baby. Liquid
After this, our family doctor referred us to
medicines were given but I still had seizures.
a neurologist in Louisville, Kentucky. I was
School was difficult for me. I just felt like
diagnosed with tuberous sclerosis complex
sitting there, because I couldn’t think about
(TSC). New medicines were given to me
class work. Seizure would disrupt my sleep.
I would go to my mother. She would
ask me “How do you feel?” so the
doctors would know. If my mother
was not there, I ran to other family
members.
Feeling isolated was always with
me. I couldn’t stay by myself on the
farm, and I felt scared. My sister,
Shirley, took me Easter egg hunting,
I just kept walking. She noticed and
said, “You left the basket.” I didn’t
know I had dropped it. My brothers
and sisters told my parents I had
been dropping things on the bus.
Speaking at times was hard
due to stuttering, so I was often
misunderstood.
I finally had speech therapy as
a freshman in high school. Writing
was always my way of clearing out
the cobwebs. Jigsaw puzzles let
me relax and use my brain. Some
Theresa Vertrees
family members would say, “There is
nothing wrong with you,” but I knew
that worked better to control my seizures.
there was. Everyone in my family helped
My brother Dan took us to see Dr. Meckler
me in some way.
for several years.
Music was played in our household. I
Visiting my two sisters out west helped
learned to speak more clearly by singing
me see new places. I tried college a couple
my words out. This later led to me putting
of times and made some new friends. Back
music to the poems I wrote. Sports of all
home, I enrolled in Vocational Industrial
kinds in the 1970s were big in our family.
Service so I could increase my skills.
I tried basketball and felt as if I was two
Counseling also helped at different times
people playing on the court. I also played
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because TSC affected my overall being,
especially organizing. Testing was given
to find where my strengths were. Music
was one of them.
I started working for my sister Carol and
brother-in-law Ray in assembling fishing
lures at home with my mother. I continued
to work for them until they wanted to retire.
Then I worked at a hardware store. One
good thing came out of working:
I meet my future husband Dennis.
After work I might feel overwhelmed
and stop at my friend Renae’s house,
then I would drive home. Sometimes
if work was very stressful, I would
stop at the house of Dennis’ family,
and they would take me home until
we got to my country driveway.
In the 1990s, Dennis started
taking me to my doctor appointments.
Years went by and I was still trying
to understand my body. The doctors
tried many medicines to help me
feel more stable and secure. Some
helped but others didn’t. I could tell
that driving alone was not for me. I
felt very scared, nervous and very
isolated. Still not comfortable, I finally
turned in my license.
After my mother passed in 2000,
I wanted to keep her memory alive.
I started to search in my motherin-law’s old medical books and found
the TS Alliance when it was still called he
National Tuberous Sclerosis Association.
The TS Alliance helped a great deal
so I could feel normal. When I needed to
ask questions, they were always there. A
writer’s group at the college encouraged
me to explore and share about TSC. One
former member of the group wrote a story
about TSC in the local paper.
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During my forties to
fifties, I still had seizures every
now and then, and spots developed
in my eyes behind the retina, mostly in
the left one but some in the right. I also
developed Type II diabetes. Dentists have
been working on my teeth for many years
due to dental pits related to TSC. Facial
angiofibromas started when I was little.
Dermatologists removed them when
needed. A lung doctor found pulmonary
cysts and noncalcified nodules, which
were not serious in my lungs.
My life has been a true long journey,
and I’m still fighting and wish everyone
affected by TSC to do the same. In closing,
I want to give a very special thanks to my
mother, Ozella, who never gave up on me.
Theresa and Dennis Vertrees
TS Alliance Research Grants Update
T
h r o u g h o u r 2 014 R e s e a r c h
Grants Program, the TS Alliance
awarded $525,000 to support
TSC-related research by four investigators over the next two years. These four
scientists have not previously received
research funding from the TS Alliance.
We hope these researchers are able to
build upon the work that results from
these projects to remain in the field of
TSC research for many years to come.
Dr. Gerta Hoxhaj (Harvard School of
Public Health) was awarded a TS Alliance
Postdoctoral Fellowship to study the role
of the protein TBC1D7 in cell migration in
neurons and angiomyolipomas. Working under
the guidance of Dr. Brendan Manning, Dr.
Hoxhaj will study a protein named TBC1D7.
TBC1D7 was recently identified by the Manning
laboratory as a core component of a protein
complex together with the TSC1 and TSC2
proteins, hamartin and tuberin. Dr. Hoxhaj will
focus on her findings that the TSC1/TSC2/
TBC1D7 complex influences cell shape and
migration and explore the role of these new
functions in both angiomyolipoma cells and
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neurons. These studies should impact both
our basic understanding of TSC and our
approach to treating the disease.
Dr. Michael Higley (Yale University)
received a research grant to learn how loss
of TSC1 disrupts brain signaling circuits in
mice, using the function of visual cortex
as a model system. Given the large body
of knowledge on the normal function of
the mouse visual system, this approach
provides a critical framework in which to
interpret disease-related alterations in brain
circuits. Dr. Higley will study how deletion
of TSC1 in a subpopulation of brain cells,
specifically in GABAergic interneurons,
contributes to circuit abnormalities. He
will also test whether treatment with the
drug rapamycin improves changes in both
brain activity and behavior in these mice.
Dr. Wei Shi (Children’s Hospital, Los
Angeles) was awarded a research grant to
develop and test a novel mouse model of
LAM. These mice lack TSC2 in a subset
of lung cells. Dr. Shi’s preliminary studies
found that the lung-specific TSC2-mutant
mice spontaneously develop lung changes
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including nodules and cysts, predominantly
in adult females, which are similar to the
changes observed in people with TSC. The
proposed research project is to validate this
TSC lung disease model and to determine
how these TSC-LAM-like lung changes
develop in the TSC2-mutant mice.
Dr. Gabriella D’Arcangelo (Rutger’s
University) received a one-year research
grant to develop human TSC neurons
derived from induced pluripotent stem cells.
A significant limitation of animal studies
is that they do not utilize human cells
and proteins. To overcome this problem,
Dr. D’Arcangelo will establish induced
pluripotent stem cells (iPSCs) that can
be grown in a dish from individuals with
TSC and sibling controls. From these cell
lines, she will then derive neural stem cells
(NSCs) that are similar to developing brain
cells. Since these cells can be cultured in
a dish, researchers will be able to study
them at the cellular and molecular level
to give us new insights into abnormalities
that occur in the developing brains of
individuals affected by TSC.
13
Volunteer Participation in Clinical Trials
Helps Improve the Lives of
People with TSC
A
dvances in treatment for children and adults with TSC and
associated conditions – such
as angiomyolipomas, angiofibromas,
autism, epilepsy, lymphangioleiomyomatosis (LAM), and subependymal giant
cell astrocytoma (SEGA) – have been
possible because of clinical trials and
research studies designed to include
individuals with this genetic disorder.
What is a Clinical Trial?
A clinical trial is a research study using
human volunteers designed to evaluate the
safety and effectiveness of a drug, biologic
(such as a vaccine), device (such as vagus
nerve stimulator) or other treatment or
behavioral intervention. Carefully conducted
clinical trials are the fastest, safest ways to
find treatments that improve health in people.
The Evolution of Clinical
Trials for TSC
During the mid-1990s, only a few U.S.
studies included people with TSC. Two
studies conducted by Joel Moss, MD, a lung
diseases specialist at the National Insititutes
of Health (NIH), are still enrolling volunteers
nearly two decades after the first participant
signed up. One is an observational study at
NIH to characterize the clinical course and
the disease process of LAM and the other
looks at the genetic mechanisms of lung
diseases. Another study initiated by two
child neurology/epilepsy specialists was
conducted at 9 medical centers around the
country between 1996-2001. It evaluated
the effectiveness and safety of vigabatrin
in infants with newly diagnosed infantile
spasms, a type of epilepsy with onset usually
before age 1 year and due to various causes
such as TSC. This investigator-initiated
trial included the volunteer participation of
more than 100 infants by their parents, and
the study results helped lead to approval
of vigabatrin by the U.S. Food and Drug
Administration (FDA).
In 2007, Dr. David Neal Franz at Cincinnati
Children’s Hospital in collaboration with
Novartis conducted a single-site clinical
trial of 28 volunteers to evaluate the safety
and effectiveness of everolimus (nicknamed
RAD001) in individuals 3 years or older
with a SEGA associated with TSC. In this
trial, every participant knew they would be
treated with RAD001 (“open-label”) and at
the same dosing regimen (“single-arm”).
The positive results from this trial led to a
larger clinical trial in 2009, sponsored by
Novartis, conducted at more than 20 study
sites enrolling 100-plus individuals of all
ages. In this larger trial, participants were
randomly assigned to one of two treatment
groups unknown to both the participant
and the treating physician (“double-blind
randomization”) to receive either RAD001
or a tablet containing inactive ingredients
(“placebo”).
Since 2009, more than 15 new
clinical trials have been initiated to
study various manifestations associated
with TSC, including skin (angiofibromas),
kidney (angiomyolipoma), lungs (lymphangioleiomyomatosis), and brain (behavior,
learning, epilepsy, SEGA).
What Are the Different Types of Clinical Trials?
14
Clinical Trials Type
Description
Interventional or Treatment Trials
These test experimental treatments, new combinations of drugs, or new
approaches to surgery or radiation therapy.
Prevention Trials
These look for better ways to prevent disease in people who have never had
the disease or to prevent a disease from returning. These approaches may
include medicines, vitamins, vaccines, minerals, or lifestyle changes.
Biomarker Studies
These are conducted to find tests useful for measuring the progression or
risk of developing a particular disease or condition.
Screening Trials
These test the best way to detect certain diseases or health conditions.
Quality of Life Trials
(or Supportive Care Trials)
These explore ways to improve comfort and the quality of life for individuals
with a chronic illness.
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Participating in
a Clinical Trial Is
an Important Personal
Decision
Volunteers who participate in a clinical
trial with the knowledge they may receive
no benefit are as critical to the advancement of treatments for TSC as are the
researchers who conduct the trial.
Federal guidelines require a clinical trial
team (doctors, nurses, and other healthcare
professionals) to provide written, detailed
information about the clinical research study
they are conducting in a document called
an “Informed Consent Form” (ICF). The
key elements of the ICF include:
1. The purpose of the research study.
2. The name of the entity that is providing the funding to support the conduct of the study (“Study Sponsor”).
3. The names of the key members of
the clinical trial team.
4. Disclosure of potential conflict of
interest by any of the key members
of the clinical trial team (such as
serving as an expert consultant for
the study sponsor).
5. The procedures (e.g. lab tests, EEG,
MRI, psychological tests, surveys,
etc.) peformed as part of the
research study.
6. How long the study will take.
7. The risks and benefits of study
participation.
8. The contact information to report
any concerns about the study.
Volunteers Play Pivotal
Roles in TSC Clinical Trials
The FDA’s approval of vigabatrin
(Sabril®) in 2009 for treating infantile
spasms and of everolimus (Afinitor®) in
2010 for treating SEGA and in 2012 for
treating renal angiomyolipoma associated
with TSC could not have occurred without
the help of hundreds of volunteers who
participated in the clinical trials that tested
the safety and effectiveness of vigabatrin
and everolimus. Kari Luther Rosbeck,
TS Alliance President & CEO, publicly
acknowledged the first 28 volunteers
(nicknamed the “R AD001 28”) who
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participated in the 2007 SEGA clinical trial
as “heroes” because of their contribution
to the approval of the first drug for a
TSC indication – a significant advance in
treatment for those affected.
Real-life Experiences in
TSC Clinical Trials
Three adults with TSC (BA, JW, KK)
and 4 parents of children with TSC (DM,
KK, LB, LS) residing in different regions
of the U.S. recently shared their experiences for this article. Here are some of
their comments:
DM: “We were introduced to clinical trials
on the day of diagnosis because it was
one way we might achieve access to a
drug that was not yet FDA-approved but
which had lots and lots of success treating
infants with infantile spasms.”
LB: “Each time the study was explained
thoroughly and we were given plenty of
opportunity to ask questions.”
KH: “I had a good understanding of what
it was going to involve as my wife is a
pharmacist by training and works for a
drug company in clinical supply operations.
While I had knowledge of the protocol
beforehand, both my wife and I visited
with the doctor and study coordinator
who reviewed it with us. We never felt
pressured to participate.”
BA: “I was in a study to compare women
with TSC with angiomyolipomas, but who
did not also have LAM, to women who have
both angiomyolipomas and LAM. They
were trying to determine what factors
might predispose one woman with TSC
to suffer from both, while others with
angiomyolipomas never developed LAM,
or LAM-like symptoms.”
LB: “We participated in 2 studies focused
on identifying the gene(s) that cause TSC.
In 1995 we allowed tissues and blood
samples (tissue removed in a surgery)
to be sent for a study; our son is also
participating in the TS Alliance’s TSC
Natural History Database. In 2010 and
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2012 as an adult, he participated in a
treatment trial of topical rapamycin.”
What are some of the reasons you
consented to participate/allow your
child to participate in a clinical trial?
LS: “I wanted to have my son participate
to help further research and understanding
of TSC as well as learn more about the
disease and become better able to help
him have an improved quality of life.”
JW: “I wanted to see if it would make a
significant change to the current status of
the angiofibromas on my face, and I was
exploring alternative options that were
less invasive as surgery. Appearance and
self-esteem are some of the issues I faced
as a child prior to having laser surgeries.”
KH: “For the treatment and diagnostic trials,
I wanted to see if the medicine/imaging
would work for me and to advance the body
of knowledge so that others might have the
chance to benefit as well. For quality of life
studies, it is a chance to give insight into the
daily experience of living with TSC in hopes
that researchers can suggest changes to
improve the lives of those affected.”
BA: “Partially, I was curious and saw it
as an adventure. It was held at NIH in
Maryland and included roundtrip airfare
and a stay at the NIH campus. In addition,
my friend who was already a participant
told me about some of the other wonderful
TSC participants who I looked forward
to meeting – and potentially helping – if
the study was successful. The study also
included very comprehensive testing of
all possible TSC features by some of the
best doctors available.”
KK: “The medication is already FDAapproved for other reasons so I knew
that it is safe. It is a medication that can
benefit my son and that he may end up
on in the future anyway so we thought
we’d help out with the trial.”
DM: “We were at an intersection of ‘Dead
End’ and ‘No Way Out.’ We had to decide
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quickly because the situation was life
threatening. The neurosurgeons indicated
that the current treatment method would
only be marginally successful and probably
need to be repeated. The trial was being
conducted at a respected institution by
experts in the treatment of TSC. In addition
to the study we would be receiving world
class care for all other aspects of TSC.”
LB: “TSC blew in to our lives, uninvited and
unwelcome, when our son was 3 months
old. No assurances could be provided us
about the likelihood of our carrying the gene,
since that information had not yet been discovered. TSC brought many difficulties and
challenges — emotional, physical, financial,
psychological — for my husband, our son, our
extended families and me. If we could help
make this better/easier for others coming
behind us, how could we not?”
Any other comments?
DM: “There may be several barriers or
obstacles to participation: long distance
travel, multiple trial visits, blood work,
sedation, multiple scans, travel with
uncontrolled epilepsy, travel with autism,
other family members to care for, time
off work, even the regimen of trial data
recording. Few of those obstacles are
absolutely insurmountable. Explore
options, talk to study coordinators, talk
to people who have participated in trials.
We the members of the TSC community
must actively participate in research, in
clinical trials if we want to advance the
care and treatment of ourselves and our
loved ones with TSC.”
taken to be seen by him. It was also
great because this neurologist is one
of the most knowledgeable about TSC
in my state. Also, the staff and doctors
running the study have been amazing.
They were always willing to take time to
answer questions, help us find the proper
services we needed in our home state
and could easily be reached by phone
and e-mail. It was incredibly comforting
to start our TSC journey this way.”
BA: “While I can’t say that the study in
which I participated was what one might
call ‘fun,’ it was definitely interesting and
I’d recommend that others participate
when the opportunity arises. Working
with the professionals who were leading
the study was quite an experience. There
were some of the most compassionate, yet
TSC-knowledgeable folks I’ve ever met.”
LB: “ When we look back at the studies
in which we have participated, and look at
what is known about TSC today, we take
some degree of satisfaction in knowing
we helped.”
LS: “One amazing thing that happened
through this study was getting to know
Dr. Joyce Wu at UCLA who happened to
know a pediatric neurologist in my state.
Through this connection, we were able
to get an appointment with him faster
than the original 6 months it would have
JW: “I feel that it is our choice, as a
patient, to participate in clinical trials.
I see it as a value-added benefit to
both myself and science to be par t
of a study. Not all drug studies work
for every patient the same way, and I
wouldn’t be discouraged by this, as this
is still critical to the life of a study. This
is our chance as a patient to pave the
way for better treatments and one day
a cure for TSC.”
Current Clinical Trials Needing Volunteers
H
elp improve the management and
care of those affected by TSC by
participating in a volunteer clinical
trial. If you or your child has TSC, or you
know someone affected, the following
studies are currently recruiting volunteers:
Early biomarkers of autism
in infants with TSC
Where : TSC Clinical Research
Consortium sites at Boston Children’s
Hospital, Cincinnati Children’s Hospital,
University of Alabama at Birmingham,
University of California at Los Angeles,
University of Texas at Houston
Principal Investigators : Mustafa
Sahin, MD, PhD (Boston), Darcy Krueger,
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MD, PhD (Cincinnati), Martina Bebin,
MD (Birmingham), Joyce Wu, MD (Los
Angeles), Hope Northrup, MD (Houston)
are enrolling 3-9 month old infants with a
diagnosis of tuberous sclerosis complex
(TSC) for a new study on early markers
of autism. The goal of this project is to
use behavioral testing, MRI and EEG
techniques to identify children at risk for
developing autism starting at 3 months
of age and continuing until 36 months
of age.
Who is eligible to participate? Infants
diagnosed with TSC will be eligible to
participate in this study if they are between
the ages of 3 and 9 months of age (under
10 months).
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What will we do? If you agree to participate, the research team will obtain your
informed consent. The study involves up
to seven visits to a study site over a three
year time period. The study visits will include
behavioral testing, MRIs and EEGs. Parents
will be with their child at all times.
Cost/time commitment: Study visits
will vary in length based on your child’s
age, but generally be a few hours in time. There is no fee to participate in this study.
A voucher for parking and meals will be
provided to you at each study visit. Travel
funding may be available.
Results: Summary scores of your child’s
behavioral testing, MRI and EEG results
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will be provided to you. Every step of the
way, if new results from the testing are
concerning, we will notify you and assist
you in obtaining referrals or interventions,
if you choose. After all study data has
been analyzed, we will inform families of
the overall results.
Contacts: If you are interested in learning
more about this study, please send an
email to info@tscstudy.com or visit www.
tscstudy.com for contact information at
each study site.
A placebo-controlled study
of efficacy & safety of 2
trough-ranges of everolimus as adjunctive therapy
in patients with TSC &
refractory partial-onset
seizures (EXIST-3)
This is a clinical trial sponsored by
Novartis Pharmaceuticals being conducted
at over more than 100 locations around
the world. The purpose of the study is to
evaluate the effectiveness and safety of
two dose ranges of everolimus as add-on
therapy in persons with tuberous sclerosis
complex and uncontrolled partial-onset
seizures who are 2-65 years old (except
in Europe the minimum age is 1). Visit
www.clinicaltrials.gov for more information.
Rapalogues for autism
phenotype in TSC (RAPT)
A feasibility study Dr. Tanjala Gipson
is seeking individuals ages 2- 30 years
old to participant in this clinical study
being conducted at the Kennedy Krieger
Institute in Baltimore, MD. The purpose
of this study is to assess the feasibility
and safety of administering rapalogues,
sirolimus or everolimus, in participants
with tuberous sclerosis complex (TSC)
and self-injury and measure cognitive and
behavioral changes, including reduction
in autistic symptoms, self-injurious and
aggressive behaviors, as well as improvements in cognition across multiple domains
of cognitive function. Participants will
be scheduled for 12 study visits during
the course of a year (52 weeks). This
will include one outpatient screening
visit, two outpatient baseline visits, nine
interim outpatient visits and 12 telephone
calls. Participants will be characterized
clinically, behaviorally and genetically by
trained and certified research staff. Blood
collection will be obtained throughout
the study. For more information contact
ResearchTrials@kennedykrieger.org or
Kosa Jenkins at JenkinsK@kennedykrieger.
org or 443-923-9196.
Additional studies
For information about other TSC clinical
trials www.tsalliance.org/clinicaltrials or
look announcements posted on Facebook
or Inspire as well as via email.
New TSC Associated Neropsychiatric
Disorders (TAND) Resources Available
T
he TS Alliance is plea sed to
offer new resources about TSC
Associated Neropsychiatric
Disorders (TAND) on our website at
www.tsalliance.org/TAND. These new
resources include a video, entitled
“An Introduction to TSC Associated
Neuropsychiatric Disorders (TAND)
and TAND Checklist ,” presented by
Petrus J. de Vries, MBChB, MRCPsych,
PhD. You can also downlowd a PDF of
the new TAND Checklist to share with
physicians and find two recent medical
journal articles about TAND. The TAND
Checklist was developed to help clinical
teams, individuals with TSC and their
families screen for TAND at every clinic
visit and prioritize what to do next.
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TAND is a new terminology to describe
the interrelated functional and clinical
manifestations of brain dysfunction in
TSC, including aggressive behaviors,
autism spectrum disorders, intellectual
disabilities, psychiatric disorders, neuropsychological deficits,
as well as school and
occupational difficulties.
Moreover, TSC is associated with a wide range of
cognitive, behavioral and
psychiatric manifestations.
These manifestations are
often of greater concern
to individuals with TSC
and their families and
caregivers than other
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symptoms of TSC such as epilepsy, skin
lesions or kidney problems.
Care should be taken to perform appropriate assessments at regular intervals as detailed
in the consensus clinical guidelines for the
assessment of TAND in individuals with TSC.
Appropriate screening will
identify these cognitive and
behavioral problems and
lead to implementation
of relevant intervention
strategies to facilitate the
development of appropriate
skills, to prevent the emergence of further problems,
and to manage existing
disorders, syndromes or
psychological issues.
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Reading Recommendations
Mommy...Move The Sun
It Isn’t Fair! Siblings of
Children with Disabilities
By Jeanie Gould
Mommy...Move The Sun is about
overcoming struggles that range from
terrifying to humorous, as Jeanie Gould
and her family raise their severely disabled
daughter who was diagnosed with
tuberous sclerosis complex before birth.
Experiencing fear, pain, then amazing
joy, the Goulds embark on their journey, raising the child doctors said would not live. Written with tears, laughter, and true
stubborn grit, this is a love story about their daughter, Nikki,
now age 27. The doctors were right about one thing: Nikki does
have tuberous sclerosis complex, a rare disease. However, she
has a lot more. She has a family who loves her, a huge circle
of friends that adore her, a happy heart, contagious giggles, a
great sense of humor, and generous hugs and kisses. Nikki,
their life teacher, has taught them to never let anyone take
hope away from them, to never give up, and to never take no for
an answer. Their story can help other families get through the
challenges of raising a handicapped child, even after entering
the dark tunnel of shattered expectations. They too can come
out the other end with compassion, acceptance, appreciation,
laughter, joy...and most of all, hope.
By Stanley D. Klein & Ma xwell J.
Schleifer
Parenting is always a vital and challenging task. Even more vital and challenging is the task of parenting a child
with a disability. When there is more than
one child in the family, all parents want
to share their time, energy, and love with all their children—and
all siblings sometimes wonder if they are being treated fairly.
When one child in a family has a disability, all this becomes
more complex. Parents and sisters and brothers often feel that
for them, it isn’t fair.
Selected and compiled from two decades of The Exceptional
Parent magazine, It Isn’t Fair! reveals first-hand the myriad feelings of normal brothers and sisters at all stages as they grapple
with caretaking, frustration, powerlessness, jealousy, guilt, and
worry about their special siblings. Breaking the wall of silence
that deference has imposed on their experiences, here are the
siblings of the child with autism, the child injured at birth, the
child institutionalized after many years at home. Parents offer
their own experiences and perspectives on their children, and
they illustrate the importance of sharing information within the
family. The editors also include professional commentary.
What About Me?
Growing Up with a
Developmentally Disabled
Sibling
Special Brothers and
Sisters
By Annette Hames
By Bryna Siegel & Stuart Silverstein
How do families cope with the stressful aspects of raising a developmentally
disabled child? There are more than a
million mentally impaired children in the
United States, and another million children
suffering from physical disorders or sensory handicaps. In What
About Me? Growing Up with a Developmentally Disabled
Sibling, Dr. Siegel, a highly regarded developmental psychologist,
and Dr. Silverstein, a respected pediatrician, compassionately
address the issue of living with a neurologically impaired sibling.
They offer an incisive guide to the psyche of siblings who must
assume difficult tasks and burdens, and approach their subject
from a variety of perspectives.
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A helpful guidebook with 40 short
sections beginning with a comment
(“Sometimes she pulls my hair” or “People
stare”), followed by the editors’ commentary
on understanding the situation and dealing with it. This is a quick, easy-to-read,
compassionate approach, and it emphasizes the love between
siblings regardless of differences in abilities and perceptions.
My Brother is Different
By Barbara Morvay
How do you explain to the sibling
of an autistic child that their brother’s
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behavior is not their fault? How do you convey that the guilt and
confusion they may feel toward their autistic sibling are in fact,
okay? My Brother is Different breaks new ground by tackling
this rarely discussed subject. While there are numerous books
on the market focused on autism, there are few if any about the
often deeply-conflicted emotions of the sibling of an autistic
child, until now. Filled with illustrations, the book contains three
sections. The first written in rhyme, aims to assist the sibling(s)
work through their emotions. The second provides parents
with a roadmap for starting a dialog with their children. The
final section of the book instructs parents on how to replace
the child’s negative feelings with positive action. My Brother is
Different is a wonderful book for helping young siblings cope
with having a brother or sister with autism.
Messages
from My Heart
Volumes 1 & 2
By Lisa Cummings
These poetry books are
designed for special needs
parents, written by a mother who has a child with tuberous
sclerosis complex. These poems speak from the heart.
TS Alliance Welcomes New Members To Our Board of Directors
Cassandra “Cassie” Carroll is
an attorney at the San Francisco law firm
of Seyfarth Shaw LLP, where she specializes in labor and employment issues; she
also has a young son with TSC. After his
diagnosis in 2011, Cassie immediately got
involved with the TS Alliance, initially by
working with area constituents to seek
support for Federal research funding
from her local Congressional representative as part of the TS Alliance’s annual
March on Capitol Hill efforts. Through
charity auctions, raffles and other events,
she also independently raised $5,000
to $6,000 in both 2012 and 2013 to
benefit the TS Alliance. Then in 2013,
Cassie participated on the organization’s
Strategic Planning Committee. Cassie’s
board interests focus on fundraising
and providing expertise in employment
issues impacting the TS Alliance as well
as workplace hurdles and issues faced
by those affected by TSC. Cassie lives
with her family in Oakland, CA.
April Cooper and her husband
Alfred have twins with TSC – Abigail and
Amelia. April is Business Intelligence
Manager at GE Capital/GE Real Estate.
She served as a Community Alliance
Chair in Orange County and Southern
California for 12 years and also helped
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lead multiple high-profile fundraising events
benefiting the TS Alliance, including the
Orange County Golf Classic (2002-2007),
Comedy for Cure (2002-2014), and several
Step Forward to Cure TSC walkathons. In
addition, April played a significant role in
establishing the first TSC Clinic on the west
coast when the Loma Linda TSC Clinic
opened in 2003. Moreover, April and her
family have been instrumental in creating
and supporting the TS Alliance’s annual
March on Capitol Hill to gain Federal TSC
research funding, which has received $59
million in appropriations to date. April plans
to use her experience to support the board’s
outreach, finance and science/research
efforts. The Cooper family lives in Irvine, CA.
Beth Dean is an accomplished business executive with more than 20 years
of experience in the pharmaceutical and
environmental fields, and she spent 8 of
those years working with the TS Alliance
as a corporate partner while at Lundbeck
(formerly Ovation Pharmaceuticals). Beth
was named one of the Healthcare
Businesswomen’s Association (HBA)
rising stars of 2008 and currently serves
as VP on the Chicago HBA Board of
Directors. Beth is also a board member
with Equip for Equality in Chicago, serves
on the Citizen’s Advisory Committee for
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the Solid Waste Agency of Lake County
(SWALCO), and was named the Northern
Illinois Food Bank’s volunteer supervisor
of the year in 2013. She hopes to use
her expertise in marketing, business
development and strategy to help the TS
Alliance fulfill its mission. Beth resides in
the suburbs of Chicago with her husband,
her two children and her rescue lab Puck.
Colleen Johns
is a commercial
litigation attorney at the law firm of Duane
Morris LLP in Philadelphia. Because her
daughter Stephanie has TSC, Colleen
has been actively involved in government advocacy over the past year. She
helped secure Representative Michael
Fitzpatrick to co-sponsor the House Dear
Colleague letter in support of the TSC
Research Program at the Department of
Defense. Representative Fitzpatrick also
invited Colleen’s daughter Stephanie to
the House Floor when he gave remarks
to support Federal TSC research funding. Colleen currently serves on the
TS Alliance’s Fund Development and
Governance Committees. In addition
to advocacy, Colleen wants to use her
professional skills to emphasize fiduciary
responsibility and to help the educational
needs of children with TSC. Colleen and
her family live in Narberth, PA.
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TS Alliance Achieves
Charity Navigator 4-Star Rating
C
harity Navigator, America’s
largest and most-utilized independent evaluator of charities,
has awarded the Tuberous Sclerosis
Alliance (TS Alliance) the prestigious
4-star rating for good governance,
sound fiscal management and commitment to accountability and transparency. In addition, the TS Alliance
has already complied with Charity
Navigator’s upcoming CN 3.0 results
reporting, which focuses on long-term
organizational impact . For more
information, visit www.tsalliance.org/
results.
“We are truly honored to receive
Charity Navigator’s highest rating,” said
Kari Luther Rosbeck, President and CEO
of the TS Alliance. “This distinction reflects
our accountability to all our constituencies and commitment to remain true to
our mission to find a cure for TSC while
improving the lives of those affected.”
Since 2002, using data-driven analysis,
Charity Navigator has awarded only
the most fiscally responsible organizations a 4-star rating. In 2011, Charity
Navigator added a second dimension of
Accountability and Transparency (A&T) to
its rating methodology, and now reviews
17 governance and ethical practices as
well as measures of openness, providing
information on its web site for each of the
charities it evaluates. The A&T metrics,
which account for 50 percent of a charity’s
overall rating, reveal which charities have
“best practices” that minimize the chance
of unethical activities and whether they
freely share basic information about their
organization with their donors and other
stakeholders.
“The TS Alliance’s coveted 4-star
rating puts the organization in a very
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“This distinction reflects
our accountability to all
our constituencies and
commitment to remain
true to our mission to
find a cure for TSC while
improving the lives of
those affected.”
select group of high-performing charities,” according to Ken Berger, President
and CEO, Charity Navigator. “Out of the
thousands of nonprofits Charity Navigator
evaluates, only one out of four earns 4
stars—a rating that, now, with our new
Accountability and Transparency metrics,
demands even greater rigor, responsibility
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and commitment to openness. TS
Alliance supporters should feel much
more confident their hard-earned
dollars are being used efficiently and
responsibly when it acquires such a
high rating.”
“It’s important our donors as well as
the individuals and families impacted by
TSC trust that we’re using our funding
wisely to accomplish our mission,” Kari
added. “Our 4-star Charity Navigator
rating demonstrates to all our supporters
that we take our fiduciary and governance
responsibilities very seriously.”
The TS Alliance’s rating and other
information about charitable giving
are available free of charge on www.
charitynavigator.org. More-detailed
information about the TS Alliance’s rating is available to Charity Navigator site
visitors who become registered users,
another free service.
Charity Navigator is the largest charity
evaluator in America and its website attracts
more visitors than all other charity rating
groups combined. The organization helps
guide intelligent giving by evaluating the
Financial Health and Accountability &
Transparency of roughly 5,500 mid-tolarge sized charities that garner roughly
50% of all private contributions made
in the USA each year (not including
houses of worship). Charity Navigator
accepts no advertising or donations from
the organizations it evaluates, ensuring
unbiased evaluations, nor does it charge
the public for this trusted data. As a
result, Charity Navigator, a non-profit
501 (c) (3) organization itself, depends
on support from individuals, corporations
and foundations that believe it provides
a much-needed service to America’s
charitable givers.
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2015 REGIONAL TSC CONFERENCE SERIES
T
region’s top experts, and attendees will have the opportunity to
participate in a meet-the-experts session following the conference presentations. The 2015 Regional TSC Conference Series
will provide a forum much-needed for the growing number of
individuals and families facing the daily challenges of TSC.
he TS Alliance is pleased to present the 2015 Regional
TSC Conference Series. These one-day conferences will
provide educational outreach, information on the latest
treatment and testing options, basic and transitional research
updates, and support options. Every conference will feature each
Conference Series
Schedule
June 27: Stanford, California
May 3: St. Paul, Minnesota
Hosted by the TSC Clinic Without Walls
at United Hospital
Hosted by Northern California TSC Clinic/
Lucille Packard Children’s Hospital at The
Conference Center at Li Ka Shing Center,
Stanford School of Medicine
September 26 : WinstonSalem, North Carolina
Hosted by Wake Forest Baptist Medical
Center Tuberous Sclerosis Clinic at
Graylyn International Conference Center
Regional TSC Conference Agenda
8:30 – 9:30 am
Conference Registration Check-in and Adults with TSC Meet-and-Greet
9:30 - 10:30 am
Welcome, TS Alliance Update and General Session: The Future of TSC Research and Practical
Guide to Updated Consensus Guidelines
10:30 – 10:45 am
Break
10:45 – 11:45 am
Break Out Session 1: Seizure Types and Treatments Break Out Session 2: Current Treatment Options and Clinical Trials for Kidney and LAM
11:45 am – 12:00 pm
Break
12:00 – 1:00 pm
Break Out Session 3: ADHD and Behavioral Challenges in Children with TSC
Break Out Session 4: Sleep Disorders in Adults with TSC 1:00– 2:00 pm
Lunch 2:00 – 3:00 pm
Break Out Session 5: Autism Spectrum Disorder and Therapeutic Options (Pediatric)
Break Out Session 6: Mental Health Issues and Advocating for Yourself as an Adult with TSC
3:00 – 3:15 pm
Break
3:15 – 4:30 pm
General Session: Genetics and TSC
Conference Ends, Optional Additional Support and Networking Opportunities
5:00 – 6:00 pm
Meet-the-Experts and Educational Session with Dena Hook, Vice President of Outreach, TS Alliance
Registration
Information
Registration is $10 per person. Online registration coming soon at
www.tsalliance.org/conferences.
For complete details, please visit
www.tsalliance.org/conferences
or call 1-800-225-6872.
Please note: Childcare will not be available at any of the conferences.
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Special Events
history of the triumphs and challenges
so many have endured. And it validated
our organization’s journey while paying
tribute to the sacrifices of individuals and
families to ensure a brighter future for the
next generation. With you by our side,
the future is more hopeful than ever. You
have helped instill a belief that nothing is
impossible—especially better treatments
and one day, a cure.
TS Alliance founding mother Adrianne Cohen and her family.
Chris and Joy Dinsdale with Honorees Celia and Abe Mastbaum.
For a chance to see the play at an
event near you, watch for three more shows
in 2015! We will bring to Four Decades
| One Community to life in Minneapolis,
MN; Washington, DC; and Boston, MA
in the fall of 2015. Visit the online event
calendar at www.tsalliance.org to see
dates published soon.
Upcoming Events
April 12, 2015: The 14th annual Comedy
for a Cure® benefiting the TS Alliance
will be held at the Globe Theater, Universal
Studios in Universal City, CA. This event has
raised nearly $4 million over the last 13 years
and also gained extensive visibility for TSC,
proving laughter really is the best medicine!
The night begins with red carpet arrivals
to help garner awareness of TSC. Next is
a one-hour cocktail reception and silent
auction, followed by comedy performances
and a live auction.
March 8, 2015: Join Pam and Rita
Sztukowski as they host the 22nd annual
Cookin’ Up a Cure, a Pampered Chef auction
to benefit the TS Alliance. Registration
begins at 12:30 pm at Knights of Columbus,
732 Badger Ave., South Milwaukee, WI
53172. Please RSVP to Pam at 414-2816383 or pamchef@wi.rr.com.
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attracted 100 golfers and 162 for dinner. It
was a gorgeous day for golf, with lots of
laughter and fellowship. The tournament
was followed by a spectacular dinner and
program/silent auction. The TS Alliance is grateful for the
Buntrocks for spearheading this event
to raise awareness and funds for the TS
Alliance but most importantly, to honor their
sweet daughter, Heather Joy Buntrock, who
had both TSC and LAM. Congratulations
to everyone twho helped make this event
such a success, raising more than $13,000.
Proceeds were donated to the LAM
Foundation and the TS Alliance.
The 8th Annual Heather Joy
Memorial TS Alliance/LAM Foundation
Golf Outing, held September 6, 2014,
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Comedy for a Cure has been a key
cause within the entertainment industry
and the comedy community. Last year’s
event featured Parks and Recreation’s Jim
O’Heir as emcee along with comedians
Mo Collins, Kate Flannery, and Jerrod
Carmichael. 2015 will be our most entertaining year yet with Honorary Chair Jim
O’Heir, Emcee Mo Collins and performers
Retta and Craig Shoemaker.
Comedy for a Cure is proud to recognize
the Ron Heffron Family this year with
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the Courage in Leadership
Award. The Heffrons have
been instrumental in guiding
the TS Alliance’s efforts
to expand services and
influence research through
raising awareness of the
organization, serving on
national research review
panels and service on the Board of Directors
of the TS Alliance. Ron and Ann have had a
tremendous impact on quality of life for all
individuals affected by TSC by serving as peer
supporters to the
TSC Community,
both nationally
and in their home
turf in southern
California, and
their fundraising efforts have
inspired donors
from all over the
world to champion
our cause. The
Hef frons have
offered their time,
their expertise and their compassionate
commitment to help realize our vision of
creating a world where no one has to endure
the devastating effects of TSC. The TS Alliance is also thrilled to honor
Helena Foulkes, President, CVS/pharmacy
and Executive Vice President, CVS Health.
CVS Health, at this year’s event. CVS first
got involved in Comedy for a Cure in 2005
and has continued to support the event
through generous sponsorships. Helena
has served on the honorary committee
of Comedy for a Cure since 2012 and
has been instrumental in the TS Alliance
government advocacy efforts by garnering
Congressional support for the appropriation
for TSC research in
the Congressionally
Directed Medical
Research Program
budget. In addition, since
F DA a p p rova l of
Sabril® (vigabatrin) in
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2009, CVS Health has served
as one of four specialty
pharmacies that distribute
the medication based on very
strict safety requirements.
Under Helena’s leadership,
CVS Health has gone above
and beyond to ensure the
needs of children and adults
with TSC are met through timely medication
delivery and by working tirelessly with the
TSC community and insurance companies
to mediate any issues with coverage.
This year’s event is dedicated to the
Goff Family, in loving memory of Tiara, who
recently lost her battle with TSC.
Our Honorary Committee this year
includes an elite mix of celebrities, studio
executives, political leaders, corporate
executives, and medical professionals. For
event, ticket, or sponsorship information
visit www.comedyforacure.org or contact
Dee Triemer, Director of Special Events and
Corporate Partnerships, at 1-800-225-6872
or dtriemer@tsalliance.org.
a cure. The event will also include a silent
and live auction with amazing deals and
lots of exciting action.
Drive for a Cure is proud to honor
Congressman Mike Fitzpatrick during
this special evening for his support and
compassionate partnership. Congressman
Mike Fitzpatrick is a proud co-sponsor of
the Dear Colleague letter in the House
of Representatives garnering support for
TSC research through the Department
of Defense Congressionally Directed
Medical Research Program. He is a lifelong
resident of Bucks County, where he has
been an active member of his community
for decades. In the 114th Congress, Mike’s
number one priority is job creation. Mike
recognizes that government does not create
jobs, but fosters an environment in which
the private sector can create permanent,
family sustaining jobs.
To get your tickets, make a donation or
find more information, visit www.tsalliance.
org or contact Dee Triemer at 1-800-2256872 or dtriemer@tsalliance.org.
May 8, 2015: The inaugural Drive for a
Cure will be held at The Simeone Foundation
Automotive Museum in Philadelphia. Drive
for a Cure is a unique food and wine event
celebrating past successes in the fight
against TSC as well as driving research
forward and pursuing hope for the future.
The event starts at 5:30 p.m. with a
guided tour of The Simeone Foundation
Automotive Museum followed by cocktails
and hors d’oeuvres. At 7:00 pm we will
have the presentation to our esteemed
honoree as well as hear from Dr. Mustafa
Sahin about how far we’ve come and how
close we are to new treatments and even
May 30, 2015:
The Fifth Annual
Rock 4 Riley will be
held from 7 to 11
p.m. at Woburn Elks
Lodge in Woburn,
MA. This fun annual event helps to increase
awareness about tuberous sclerosis complex
(TSC) and raise funds to benefit the TS
Alliance. Riley is an amazing and brave
8-year-old girl with TSC. We rock for her
and others like her who struggle with
tumors, seizures and other devastating
effects from TSC. The 2015 Rock 4 Riley
will feature live music by Fast Times, great
food, fabulous raffle prizes, silent auctions
and a few surprises
Over the past four years, we rocked with
hundreds of people and raised more than
$93,000 for the TS Alliance. We continue
to fight for a cure and hope you will join us.
To purchase tickets or if you have any
questions, please see the link on the event
calendar at www.tsalliance.org or contact
Melanie Vogel at melanievog@yahoo.com.
S c l e r o s i s
A l l i a n c e
•
W I NTE R
20 1 5
•
23
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Enroll Now in
the REN Registry
Network
T
he Rare Epilepsy Net work , or REN for shor t , is a
collaboration between the Epilepsy Foundation, RTI
International, Columbia University, New York University,
and ten organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN will
establish a registry of these patients that includes patient or caregiver-reported data in order to conduct patient-centered research. This
research will be in the form of natural history studies and completion of surveys. The registry will also create the infrastructure for future
research such as clinical trials. All of the research will be patient-centered, which means it will address research questions and topics
that are important to the patients and caregivers with the ultimate goal of having patients and caregivers better able to participate in
healthcare decisions. You may stop participating in the research at any time.
The REN Registry is funded by PCORI* (Patient-Centered Outcomes Research Institute). The TS Alliance is fortunate to be involved in
such a great organization as the REN, so let’s make the most out of this, by providing as much information as we can. This registry is unique
in that it is patient-driven and patient-centered. Please consider participating and help all of those living with TSC and other Rare Epilepsies.
Enrollment can be easily done online at www.ren.rti.org. The website will tell you everything about the REN and guide you through the
enrollment process. It also has contact information if you have questions.
*PCORI is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians
with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of
stakeholders to guide its work. More information is available at www.pcori.org.

My Earthly Journey with Tiara Has Ended

Transcription

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