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SPRING 2007 Volume 113
Tuberous Sclerosis Complex and
PAGE 7
Special Events
page 3
Government
Advocacy
Update
page 6
A Child Hero:
Reilly Sheffield
page 16
Promoting
Positive Sibling
Interactions and
Relationships
page 17
Chairman’s Letter
Andy Bott
Chair, TS Alliance Board of Directors
801 Roeder Road, Suite 750
Silver Spring, MD 20910 USA
(301) 562-9890 Toll-free: (800) 225-6872
Fax: (301) 562-9870
www.tsalliance.org
Dear Friends,
SPRING 2007 • Volume 113
Nancy L. Taylor
Chief Executive Officer
Jaye D. Isham
Managing Editor,
Director of Communications
If you have opinions, questions or articles for
Perspective, we would like to hear from you. Please
contact the managing editor to obtain a submissions
form and guidelines.
Perspective is intended to provide basic information
about tuberous sclerosis complex. It is not intended
to, nor does it, constitute medical or other advice.
The Tuberous Sclerosis Alliance (TS Alliance) does
not promote or recommend any treatment, therapy,
institution or health care plan. Readers are warned not
to take any action without first consulting a physician.
Commentary expressed herein reflects the personal
opinions of the author and does not necessarily reflect
the official views of the TS Alliance. Information
contained in the TS Alliance database is confidential
and not provided nor sold to third parties.
Perspective is published quarterly by the National
Tuberous Sclerosis Association, Inc. d/b/a Tuberous
Sclerosis Alliance, a 501(c)(3), charitable organization.
©Copyright 2004 by the Tuberous Sclerosis Alliance.
All Rights reserved. Materials may not be reproduced
without written permission. Direct requests for
reprint permission to the managing editor.
Board of Directors
Andrew Bott, Chair
Terry Elling, Vice Chair
Cathy Krinsky, Secretary
John Steenman, Treasurer
Milly Augustine
Mark Carroll
Will Cooper, Sr.
William Ford
David Neal Franz, M.D.
Janie Frost, R.N.
Jeffrey Hargreaves
Elizabeth Petri Henske, M.D.
Christy Hobart
Georgia Johnson
Megan Johnson
Fred Linder
Tommy Lindsey
Cindy Lynch
Arien Malec
Kathy Mayrsohn
Michael Michael
MaryJane Mudd
Hiroaki (Rocky) Onda, Ph.D.
Nicole Seefeldt
Chris Sheffield
Elizabeth Thiele, M.D., Ph.D.
Rob Thurston
Endowment Fund Board of Directors
Rob Thurston, Chair
Julie Blum
John Steenman
Andrew Bott
Mark Carroll
Wilfred Cooper, Sr.
Bob Groves
Cathy Krinsky
T
his is my last letter to you as Chairman of the TS Alliance Board of
Directors. After seven years on the board, my tenure is over but my commitment to the TS Alliance and its very important mission will never end.
As I look back at all the accomplishments made over the past seven years, I’m
incredibly proud but also realistic about the challenges the organization still faces.
But after serving with and meeting so many wonderful, dedicated board members,
volunteers and staff members, I’m truly optimistic about the future.
When I joined the board seven years ago, the organization’s financial position was
somewhat shaky. Since then, and through today, we’ve gained sound control over our
finances and steadily increased our overall operating budget each fiscal year.
Seven years ago, the now-thriving Community Alliance program didn’t exist.
Today, more than 30 Community Alliances across the country provide programs
and assistance in 40 states. Simply incredible.
Six years ago, the TS Alliance began a concerted effort to increase Federal
research funding on TSC. Today, the National Institutes of Health spends more
than $15 million a year on TSC research. The Department of Defense TSC research
program is also a vital tool in our quest for a cure, and over the past five years,
Congress designated $13.5 million for that program. Of course, the TS Alliance
spends a substantial amount of money to fund research as well. Since 2000, the
organization has funded $8.4 million in research grants.
In 2004, the TS Alliance made a commitment to formally recognize, and serve,
the needs of adults with TSC. In that same year, 1,000 of you served as volunteers,
but I’m proud to say more than 2,000 volunteers worked on our behalf last year, an
amazing increase in your support.
Over the past few years, we instituted the Regional TSC Conferences, and this
past summer’s National TSC Conference was a huge success, with around 1,000
attendees. A significant long-term objective was also reached last year when the
TSC Natural History Database Project was formally launched. As most of you
know, the database is exciting because it will track, for the first time, the disease’s
progression over a person’s lifetime. And that information will help pave the way for
improved treatments and therapies as well as our overall understanding of TSC.
I’d be remiss if I didn’t point out that none of these accomplishments would have
been possible without you – our constituents, volunteers, board and staff members, and
the hundreds of dedicated researchers, physicians and medical professionals who care
for those with TSC. I’m amazed at your compassion, empathy and commitment.
Serving on the board and as Chair for the last two years has been a true honor.
Thank you all for your hard work and dedication.
—Andy
On the Cover . . .
This issue’s cover photo features Kevin Jackson of Florida, a six-year-old diagnosed with TSC at three weeks. Since
then he has grown into a fun, sweet child who is full of love and lots of hugs. He loves to play basketball and soccer,
ride his bike, go to the beach and play with his brother and cousins. Kevin faces many challenges, including autism,
yet he never stops smiling and surprising those around him with the diligence he uses to overcome those challenges. His
parents, Linda and Adam say “Kevin is an inspiration to us all to work harder to be the best people we can be.”
PERSPECTIVE 2
Special Events
Put on Your Walking
Shoes and Help Make
TSC History!
The Tuberous Sclerosis Alliance’s
premiere community event, Step
Forward to Cure TSC, enters its
f if th year. Since its
inception, more than
$2.6 million has been
raised by incredible
volunteers from across
the country, donating
countless hours to raise
awareness and invaluable funds in the
fight against TSC.
New walkathon sites are being
planned for 2007, so plan now to
join the efforts in a community near
you, or contact the Tuberous Sclerosis
Alliance at (800) 225-6872 for more
information about how YOU can
organize a walk in your area.
This year’s goal: $1.25 million and
35 walkathons!
The More the Merrier
One of the most successful ways to
increase participation in your event is
to encourage walkathon teams. Each
team recruits ten walkers but you can
certainly recruit
as many people
a s p o s sible to
join you! Create
a te a m n a me ,
bring a banner
or personalize apparel to wear during
Step Forward to Cure TSC. It’s more
fun to walk with family, friends and
coworkers. The more people on your
team, the more we are able to increase
awareness and raise funds to help find
a cure. This year, the top three walk
teams from across the country will
receive recognition in Perspective.
Easy Tips for Raising
Walkathon Funds
1. Register for a Walkathon Near
You by Going to www.StepForward
3 SPRING 2007
toCureTSC.org. Then set a personal
fundraising goal and begin collecting
pledges.
2. Form a Team. Set a team goal and
team members register.
3. Create Your Own Fundraising
Page Online. One easy and efficient
way to raise funds is to personalize
your own web page then send the
link to your entire email address
book. Friends and family nationwide
can sponsor you immediately by
credit card.
4. Write a L etter. Reach out to
all those on your holiday card list,
rolodex or address book.
5. Double Donations with Matching
Funds. Many companies will match
personal gifts made by an employee
that can double or triple a gift.
6. Secure Sponsorships. Walks in
every location have sponsorships
available for individuals or companies
t hat wa nt to pa rticipate. Plea se
contact the walk chair near you or
the TS Alliance.
7. Enjoy Well-Earned Prizes! This
year, every walker who raises $100 or
more will earn a walkathon t-shirt.
Walkers raising $500 or more get a
Step Forward embroidered baseball
cap, and those raising $1,000 or more
receive a Step Forward embroidered
stadium blanket.
TS Alliance Welcomes Our 2007
National Presenting Sponsor
The TS Alliance is thrilled to
announce that Hat World/Lids has
become National
Presenting Sponsor
for Step Forward
to Cure TSC
w a l k at hon s a nd t he
official apparel company
for TS Alliance events. The 800store mall-based Hat World/Lids
is recognized as a leading specialty
retail leader of officially licensed and
branded athletic fashion headwear.
We extend our sincerest appreciation
to our dear friends and partners at
Hat World/Lids (www.lids.com).
Celebrities
Championing Our
Cause
From New York to Hollywood,
Boston to Chicago, the TS Alliance
counts on the support of celebrities
and local personalities to support our
cause and create greater awareness
of tuberous sclerosis complex. This
spring is no exception and with our
high-profile events such as Comedy
for a Cure and the New York sportsthemed gala, Giant Steps to the Cure,
these celebrity champions are helping
to raise hundreds of thousands of
dollars to fund community educational
programs and research to find a cure.
(Right) John Roberts, Senior
National Correspondent, CNN
Honorary Chair, DC Food &
Wine, March 7, National Press
Club, Washington DC .
(Top to bottom)
Honorary Chair Teri
Hatcher and Access
Hollywood’s Billy Bush
team up once again for
Comedy for a Cure,
April 1,
The Music Box@
Fonda, Hollywood.
The event also honors
long-time and loyal
supporters of the event
and the TS Alliance
Patricia Heaton and
David Hunt as well
as the Fox hit series
“House” and creator
David Shore. “House”
featured several episodes
on TSC during the
2006 season.
Tu b e r o u s S c l e r o s i s A l l i a n c e
Special Events
Giant Steps to t he
Cure, a sports-themed
gala, takes place April 12
at Pier Sixty on Chelsea
P i e r s i n N e w Yo r k .
Honora r y Cha ir Tik i
Ba rber, ret ired
Giants NFL
running back, and
Julianne Moore
host this one-of-akind event.
Jimmy Dunn, Honorary Chair
Comedy for a Cure Boston
May 6, 2007 at The Comedy
Connection Boston.
Marc Giangreco, Sports Director
& Primary Sports
Anchor, ABC 7 News,
serves as Honorary
Chair of Comedy for a
Cure Chicago, October
11, 2007 at Joe’s on
Weed Street.
More Events
A beautiful sunny November
4 day marked the inaugural Step
Forward to Cure TSC walkathon
in Corpus Christi, TX. More than
100 walkers turned out at Cole Park,
Anderson Amphitheater, to show their
support and raise more than $12,000.
The TS Alliance extends its deepest
appreciation to Honorary Co-Chairs
Barbi Leo, of KSAB 99.9 FM and Rudy
Trevion of KIII-ABC and walkathon
sponsors including The Money Box,
Rabalais, Champion, Jaycees, HEB
and Hooters. Congratulations to Chair
Carol Valdez, the walk committee and
all of the volunteers that made the day
possible.
The weather may have been rainy
but nothing could dampen the spirits
of the 40 walkers who participated
in the inaugural Tuscaloosa Step
Forward to Cure TSC walkathon held
cont in u e d
Corpus Christi walkers.
– Operations) a nd
Kathleen M. Benning
(Senior Vice President
Marketing, Advertising
& Brand Development)
presented a $5,400 check
to the Tuberous Sclerosis
Alliance from sales of
Chris Hawkey’s CD The Pursuit
sold at their Minneapolis/St. Paul
metro locations. Accepting the check
from the left are Kari Luther Carlson
(Executive Vice President of the
Saturday, November 11 at University
of Alabama – Colman Coliseum.
Congratulations to Chair Jan Hall
and sponsors, including Dr. Kamal
Raisani, The Financial Institutions
of Tu sc a loosa , Claud
G. Graham Carpet and
Woodman of the World.
The event raised more
t ha n $5,50 0. Ma ny
thanks to everyone that
made this walk a success.
On December 2,
Debra and Ed Sitar held
a Cocktail/Silent Auction
Tuscaloosa walkers.
Fundraiser in Chicago to
honor their seven-montho l d n e p h e w, C a r t e r
TS Alliance); Missy, Alan and Dan
Schmidt, who has TSC. Through the
Anderson; and Chris Hawkey.
generosity of their friends, family and
On Thursday, December 28,
local businesses, more than $3,600
the band Quietdrive held a concert
was raised for the fight against TSC.
at First Avenue in Minneapolis,
Thank you Debra and Ed for your
all decked out in “Cure Tuberous
passionate support.
Sclerosis” bracelets. A rising
talent with an Epic Record
contract, their mission was
to promote awareness of
TSC whi le per forming
in front of a mixed
generation crowd. Ba ss
guitarist Droo Hastings, a
frequent guest on KFANAM morning show, became
inspired by Chris Hawkey’s
commitment to the TS
Alliance and wanted to do
Buffalo Wild Wings Executives
something meaningful at their home
Todd M. K ronebusch (Director
town concert. Plans are underway to
of Oper at ion s, A du lt B e ver a ge
continue to work with Quietdrive in
Operations and third from the right),
the future.
Judy Shoulak (Senior Vice President
PERSPECTIVE 4
CEO’s Message
Nancy L. Taylor | Chief Executive Officer
T
his issue of
Perspective
foc u se s on how TSC rel ate s to
autism, which we know many of
you struggle with daily either as
individua ls or in your fa milies.
In fact, it’s estimated that 25 to
50 percent of people w it h TSC
fall within the autism spectrum.
Autism has also been a major topic
in the news lately, and one article
inside discusses the recently passed
Combating Autism Act of 2006,
which authorizes nearly $1 billion
over the next f ive years to f ight
autism. The Act only authorizes
a ppropr i a t ion s , but t he a c t u a l
funding to implement the law will
be established through legislation
developed by House and Senate
Subcommittees.
R e g a rd le s s , t he TS A l l i a nc e
continues to push for increa sed
research on TSC and autism, and we
believe those efforts will also increase
everyone’s understanding of autism
as a whole. We’re also reaching out
to autism-related organizations to
network and to identify opportunities to collaborate and partner with
them.
In other news, the TS Alliance
board and staff are working together
on a new strategic plan. This process
will help clarify our vision for the
next three years and ensure that
the TS Alliance maintains f inancial strength – along with the most
appropriate programs and services
– to meet the ever-changing needs of
our constituents. It’s an exciting time
for all of us.
A s you’ ll read in t his issue’s
Government Relations Update, TS
Alliance advocates made more than
250 visits on Capitol Hill during our
recent “March on Washington.” This is
an amazing accomplishment, particularly since it’s a significant increase
over the 190 visits last year. Thank
you all for the important role you play
in making sure Federal TSC research
funding remains on the agenda of your
Congressional members.
Fina lly, I wa nt to persona lly
thank outgoing Chairman of the
Board A ndy Bott for his tireless
commitment to the TS Alliance and
our very important mission. For the
past two years, he steered the direction of our organization admirably,
and it’s been my pleasure to work
alongside him. He will be greatly
missed, but he leaves a lasting legacy
that will not be forgotten.
Regards,
Nancy
TS Alliance Introduces New Online eCommunity
New Interactive Tools to Serve You Better
The TS Alliance website recently
added an exciting new feature called
eCommunity. This online area allows
you to create your own personal
profile, easily update your contact
information and access tools for
fundraising (such as renewing your
TS Alliance membership or making
an online gift). It also lets you enter
our new interactive Legislative
Action Center.
To join, simply visit www.tsalliance.org and click on the eCommunity button on the main nagivation
menu to the left.
The first time you visit this new
area, you will need to become a
registered user. Registration takes
only a moment and will allow you
to sign up for electronic updates on
TSC research and other important
5 SPRING 2007
issues, as well as participate in
TS Alliance activities and special
events. Also, if you are a TS Alliance
donor, you can receive immediate
e-receipts and keep tabs on your
donation history, which comes in
handy at tax time. Have you recently
moved? eCommunity also lets
you simply change your address,
which automatically updates the TS
Alliance database.
For special events such as Step
Forward to Cure TSC walkathons,
eCommunity lets you create
personal and team fundraising
pages, where you can upload your
favorite pictures, create fundraising
email lists, track donations and
much, much more.
Please know the TS Alliance takes
the confidentiality of your informa-
tion very
seriously. To
guard against
fraud, your
information
is securely
encrypted
and sent to
our financial network for processing.
At no time is this information made
available to any other party, and the
TS Alliance never shares your personal
information.
Join eCommunity today. If you have
questions, please call (800) 225-6872.
eCommunity was made possible through a
generous donation from the Emmory Reagan
Shapses Charitable Foundation, which was
created by Marc and Marla Shapses in honor of
their daughter Emmory.
Government Advocacy Update
“Dear Colleague”
Letters Introduced in
House and Senate
During the week of March 5,
Representatives Loretta Sanchez
( D - C A) a nd Jo Bonner ( R-A L)
issued a “Dear Colleague” letter in
support of increased funding for
the Tuberous Sclerosis Complex
Research Program (TSCRP) at the
Department of Defense. A similar
“Dear Colleague” letter is being
circulated in the Senate by long-term
supporter Senator Johnny Isakson
(R-GA). These letters were issued
in conjunction with the Tuberous
Sclerosis Alliance’s annual “March
on the Hill.” Throughout the month
of March, our advocates communicated with Members of Congress
to ask them to co-sign these critical
funding request letters.
The Defense Appropriations
Subcommittees in the House and
Senate will consider fiscal year 2008
funding for the TSCRP later this
Spring.
TS Alliance Advocates
from Around the
Nation Converge on
Capitol Hill
Patients, parents, grandparents
and other committed individuals
visited more than 250 Congressional
offices to lobby on behalf of increased
federa l f unding for resea rch on
tuberous sclerosis complex. During
their meetings, our advocates called
on their Members of Congress to
sign the Dear Colleague letters in
support of increased funding for
the TSCR P. They made a strong
case for increasing this program’s
current funding level to $10 million
in f iscal year 2008. Their efforts
are being augmented by other TS
Alliance members who were unable
to make the trip to Washington,
DC, but who contacted Members of
Congress in their home offices.
Our advocates a lso ca lled on
Congress to increase by 6.7 percent
funding for the National Institutes
of Health (NIH), a major source
of funding for TS research. A 6.7
percent increase will allow NIH to
keep pace with inf lation and fund
new initiatives that seek to gain a
better understanding of, and find a
cure for, tuberous sclerosis complex.
Call for Nominations for the Manuel R. Gomez Award
T
he TS A lliance is now
accepting nominations
for t he 20 07 Ma nuel R .
Gomez Award. This annual award
honors a n ind ividua l for eit her
making a significant breakthrough
in tuberous sclerosis complex (TSC)
research, for the body of research
they have completed to advance our
understanding of TSC, and/or for
providing outstanding clinical care
to individuals with the disease.
Nominat ions in t he form of
a letter detailing the individual’s
contribution to TSC research and/or
clinical care and an updated copy of
the individual’s Curriculum Vitae
(C V, or resume) shou ld be sent
to Vick y W hittemore at the TS
Alliance at vwhittemore@tsalliance.
org by no later than June 1, 2007.
Previous awardees will review all
applications and serve on the Gomez
Award Selection Committee.
The Manuel R. Gomez Award
is supported by a generous donation
from Jeanne and Harold Aronson in
honor of their son, Peter Aronson,
M.D.
Previous Gomez awardees include:
• 2006 – David Neal Franz, M.D.,
Children’s Hospital Medical
Center, Cincinnati, OH
• 2005 – Elizabeth Petri Henske,
M.D., Fox Chase Cancer Center,
Philadelphia, PA
• 2004 – Hope Northrup, M.D.,
University of Texas, Houston, TX
• 2003 – E. Steve Roach, M.D.,
Wake Forest University, WinstonSalem, NC (currently at Ohio
State University, Columbus, OH)
• 2002 – David Kwiatkowski,
M.D., Ph.D., Brigham &
Women’s Hospital, Boston, MA
• 2001 – Vicky Whittemore, Ph.D.,
Tuberous Sclerosis Alliance, Silver
Spring, MD
PERSPECTIVE 6
C
O
V
E
R
S
T
O
R
Y
Tuberous Sclerosis
Complex and Autism
Spectrum Disorder
T
uberous sclerosis complex
(TSC) is associated with some
of the most problematic behaviors in both children and adults, such
as autism spectrum disorders (ASD),
hyperactivity and attention deficit,
often occurring together with learning
disabilities (from mild to severe). More
recent reports have also indicated a high
incidence of depression and anxiety
in children (de Vries et al., 2007) and
in adolescents and adults with TSC
(Raznahan et al., 2006).
For individuals with TSC, there
is a distinct correlation between the
early onset of seizures, particularly
infantile spasms, in children with
TSC and the greater likelihood of
developing severe learning disabilities
and ASD, although this is not inevitable. Even though infantile spasms
are associated with autism, this is not
always the case in TSC. There are case
reports of autistic behavior in TSC
without a history of seizures or learning disability. A study by Hunt and
Dennis (1987) included 42% of children who had infantile spasms but
who were not autistic; 9% of these
children had normal intelligence.
These factors indicate that neither
learning disabilities nor seizures are
the cause of autism in TSC, but most
likely the ASD is related to the brain
pathology in TSC and possible brain
dysfunction due to mutations in the
TSC gene in cells in the brain.
Critchley and Earl (1932) first
described autistic behavior in children with TSC prior to the first
descriptions and naming of autism
by Dr. Kanner in 1943. There have
7 SPRING 2007
been several studies supporting an
association between TSC and autism
at a higher rate than in the general
population. Earlier studies reported
an incidence of autism in TSC from
17% to 58% because of the different clinical settings where the studies
were completed. More recent studies
place the incidence of autism in TSC
at 25%, with an additional 25% of
individuals who have pervasive developmental disorder (PDD) or socially
challenged behaviors (Smalley 1998).
What are ASD and PDD?
Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime. It is part of a
group of disorders known as Autism
Spectrum Disorders (ASD). Today, 1
in 150 individuals is diagnosed with
ASD, making it more common than
pediatric cancer, diabetes and AIDS
combined. It occurs in all racial, ethnic,
and social groups. In the general population, autism is four times more likely
to strike boys than girls in the general
population, but it appears to equally
affect males and females with TSC.
Autism impairs a person’s ability to
communicate and relate to others. It is
also associated with rigid routines and
repetitive behaviors, such as obsessively
arranging objects or following very
specific routines. Symptoms can range
from very mild to quite severe.
The term Pervasive Developmental
Disorders (PDD) was first used in the
1980s to describe a class of disorders
in which individuals show impairments in social interaction, imaginative activity, verbal and nonverbal
communication skills, and a limited
number of interests and activities that
tend to be repetitive. However, these
individuals do not meet the criteria
for diagnosis of autism, but often
benefit from the same educational
strategies and programs used for individuals with autism.
How is ASD Diagnosed?
ASD can usually be reliably diagnosed by age 3, although new research
is pushing back the age of diagnosis
to younger ages. A recent study
showed that children who were later
diagnosed with ASD who were tested
as early as 6 months of age showed
differences in their performance as
early as 14 months of age (Sullivan
et al., 2007). Since children with
TSC are at higher risk for developing ASD, parents should be vigilant
and watch for unusual behaviors in
their child or their child’s failure to
reach appropriate developmental
milestones. Health care professionals
may initially dismiss signs of ASD in
children with TSC because the child
is developmentally delayed, speech
delayed and/or showing other learning disabilities. If you have concerns
about your child’s development, don’t
wait: speak to your pediatrician about
getting your child screened for ASD.
Not so long ago, parents were told
that their child could not be diagnosed with both TSC and ASD. This
is no longer true, and more often, the
link between TSC and ASD is recognized by professionals and educators.
The gold standard for diagnosis
of ASD is the Autism Diagnostic
C
O
Observation Schedule - Generic
(ADOS-G). ADOS-G is a semistructured assessment of communication, social interaction and play or
imaginative use of materials for individuals suspected of having autism or
other pervasive developmental disorders (PDD). It is a combination of
two earlier instruments: the Autism
Diagnostic Observation Schedule
(ADOS), a schedule intended for
adults and children with language
skills at a minimum of the threeyear-old level, and the Pre-Linguistic
V
E
R
S
T
O
studies performed that examined the
effectiveness of early interventions
for ASD in children with TSC, but
reports from families indicate these
interventions may be just as effective
in children with TSC and ASD as in
those who do not also have TSC.
One confounding factor for the
majority of children with TSC who
have ASD is that many also have
seizures. Children who have refractory seizures will often have mild to
severe learning disabilities, and it is
not clear why some children with
R
Y
frequently than expected among
individuals who have certain other
medical conditions, including Fragile
X syndrome, TSC, congenital rubella
syndrome, and untreated phenylketonuria (PKU).
What are CDC’s Efforts?
The Centers for Disease Control
and Prevention (CDC) has established a collaborative autism research
network to explore potential causes
and factors that make it more likely
that a child will have autism. Some
If your child is diagnosed with
ASD, early intervention is critical
to gain maximum benefit from
existing therapies.
Autism Diagnostic Observation Scale
(PL-ADOS), a schedule intended for
children with limited or no language,
as well as additional items developed
for verbally fluent, high-functioning
adolescents and adults. The ADOSG consists of four modules, each of
which is appropriate for children and
adults of differing developmental
and language levels, ranging from
no expressive or receptive language
to verbally fluent adults. These
modules are labeled with numerals
1 to 4, with each activity numbered
within its module.
The guidelines for neuropsychological testing for individuals with
TSC (de Vries et al., 2005) indicate
that all children with TSC should
receive evaluation at least before
entering school, or at the first indication that the child is not meeting
the developmental milestones (which
may be at a very early age).
If your child is diagnosed with
ASD, early intervention is critical to
gain maximum benefit from existing therapies. There have been no
TSC who have refractory epilepsy
develop autism, while others do not.
What Causes Autism?
It is suspected there may be multiple causes for ASD due to a complex
interaction of genetic and environmental factors. Family studies have
shed the most light on the genetic
contribution to autism. Studies of
twins have shown that in identical
twins there is about a 75% rate of
both twins having autism, while in
non-identical twins this occurs about
3% of the time. The inheritance
pattern is complex and suggests that
a number of genes are involved. A
recent study (see sidebar) implicates
the neurexin genes in the development of ASD in familial cases, but
there is still much research that needs
to be performed to identify other
genes and to identify if the neurexin
genes play a role in ASD in individuals with TSC.
For the majority of people with
A SDs, t he c au se is not k now n ;
however, ASD tends to occur more
theories being investigated include
infection and immune function,
hormones and reproductive factors,
genetic factors, gastrointestinal factors,
socio-demographic factors and others.
A recent report (see sidebar) indicates
that ASD is actually more common
than previously identified, and that
there are significantly more cases of
ASD in New Jersey.
What about the
National Institutes of
Health?
The NIH’s Interagency Autism
Coordinating Committee (IACC)
provides a forum to facilitate the
efficient and effective exchange of
information about autism activities, programs, policies, and research
among the Federal government,
several non-profit groups and the
public. Web content includes upcoming events, meeting summaries,
congressional reports and a committee roster. NIH-sponsored research
on ASD covers everything from interventions, diagnosis, genetics, neuroPERSPECTIVE 8
C
biology and services. In addition to
individual grants for research projects,
NIH sponsors training, small grants,
career support and program projects
that involve autism research. NIH
has also developed several networks of
autism research centers.
The NIH Autism Coordinating
Committee (NIH/ACC) was formed
in 1997 to enhance the quality, pace
and coordination of efforts at the NIH
to find a cure for autism. Information
about all of the autism programs at
NIH can be found at www.nimh.nih.
gov/autismiacc/nihacc.cfm.
References
Critchley M, Earl CJC (1932) Tuberous sclerosis and
allied conditions. Brain 55:311-346
de Vries P, Humphrey A, McCartney D, Prather P,
O
V
E
R
S
T
Bolton P, Hunt A; TSC Behaviour Consensus
Panel (2005) Consensus clinical guidelines for the
assessment of cognitive and behavioural problems
in Tuberous Sclerosis. Eur Child Adolesc Psychiatry
14(4):183-90
de Vries PJ, Hunt A, Bolton PF (2007) The psychopathologies of children and adolescents with tuberous
sclerosis complex (TSC) : A postal survey of UK
families. Eur Child Adolesc Psychiatry 2007 Jan 31
[Epub ahead of print]
Hu n t A , D e n n i s J ( 1 9 8 7 ) Ps y c h i a t r i c d i s o r der among children with tuberous sclerosis.
Dev Med Child Neurol 29(2):190-8
Raznahan A, Joinson C, O’Callaghan F, Osborne JP,
Bolton PF (2006) Psychopathology in tuberous sclerosis: an overview and findings in a population-based
sample of adults with tuberous sclerosis. J Intellect
Disabil Res (Pt 8):561-9 [Erratum in: J Intellect
Disabil Res. 2006 Oct;50(10):780]
Smalley SL (1998) Autism and tuberous sclerosis. J
Autism Dev Disord 28(5):407-14
Sullivan M, Finelli J, Marvin A, Garrett-Mayer E,
Bauman M, Landa R (2007) Response to joint attention in toddlers at risk for autism spectrum disorder:
a prospective study. J Autism Dev Disord 37(1):3748 [Epub 2007 Jan 10]
Prevalence of Autism
Spectrum Disorders –
Autism and Developmental Disabilities Monitoring
Network, Six Sites, United States, 2000
T
he Centers for Disease Control
and Prevention (CDC) recently
released a study from a population-based, multi-site surveillance
network. This network determined
the prevalence of autism spectrum
disorder (ASD) in children aged 8
years in six areas of the U.S. and
described the characteristics of these
children. The children were identified to have an ASD through screening and the evaluation of records
and were classified as having an
ASD if they had documented behaviors consistent with the American
Psychiatric Association’s criteria for
diagnosing: 1) autistic disorder, 2)
pervasive developmental disorder
– not otherwise specified, or 3)
Asperger disorder.
The findings from this first
U.S. multi-site collaborative study
to monitor ASD prevalence demonstrated consistency across the majority of sites, with prevalence signifi9 SPRING 2007
cantly higher in New Jersey. Average
ASD prevalence across all six sites
was 6.7 per 1,000 children aged 8
years. These results indicate ASDs
are more common than previously
believed.
Collecting data regarding prevalence of ASDs by associated characteristics (such as cognitive impairment, age of first documented
concerns and history of ASD diagnosis), race/ethnicity, and sex will
provide important baseline standards
that can be compared with followup surveillance data to track changes
in ASD prevalence. Knowledge of
these characteristics has implications
for identification and intervention
strategies and for medical and educational service planning for children
with ASDs.
For the complete report, go
to www.cdc.gov/mmwr/preview/
mmwrhtml/ss5601a1.htm.
O
R
Y
New
Autism
Genetic
Study
Findings
Reported
A
study funded by
AutismSpeaks and the
National Institutes of Health
reported the preliminary results
from the largest-ever autism
genome scan. The study, entitled
“Mapping autism risk loci using
genetic linkage and chromosomal rearrangements,” was
published in Nature Genetics by
The Autism Genome Project
Consortium, which consists of
more than 120 scientists from
50-plus institutions representing
19 countries.
The consortium utilized
gene chip technology to look for
genetic commonality in autistic
individuals from almost 1,200
families in which more than
one individual in the family has
an autism diagnosis. Results
indicate the involvement of a
previously unidentified region of
chromosome 11 and a protein
called neurexin 1. Neurexin 1 is
a protein found on the surface
of brain cells called neurons and
appears to play a role in how
one cell recognizes and interacts
with a neighboring cell.
For more information
on this study and the Autism
Genome Project Consortium,
see the AutismSpeaks website at
www.autismspeaks.org.
Combating Autism Act of 2006
Signed into Law
T
he Combating Autism Act
of 2006, signed by President
B u s h o n D e c e m b e r 19,
authorizes nearly $1 billion over the
next f ive years to combat autism
through research, screening, early
detection and early intervention. The
new legislation would increase federal
spending on autism by at least 50% if
the funds are appropriated in the budget
to provide funding for the proposed
programs. The Act includes provisions
relating to the diagnosis and treatment
of persons with Autism Spectrum
Disorders (ASD) and expands and
intensif ies biomedical research on
autism, including an essential focus
on possible environmental causes.
Autism is now diagnosed in 1 in 150
children, according to a recent report
by the Centers for Disease Control
(see accompanying article).
Key Bill Provisions
• The Combating Autism Act (CAA)
includes provisions relating to the diagnosis and treatment of persons with
Autism Spectrum Disorders and expands
and intensifies biomedical research on
autism, including an essential focus on
possible environmental causes.
• The CAA authorizes appropriations
of $924 million during the next 5
fiscal years, increasing federal spending
on autism by at least 50%.
• The CAA creates a congressionally
mandated roadmap for a federal war
against autism, including requirements
for strategic planning, budget transparency, congressional oversight and a
substantial role for parents of children
with autism in the federal decisionmaking process.
• The CAA authorizes $645 million over
5 years to the NIH to expand, intensify
and coordinate activities on autism,
instructing it to conduct basic and clinical research into the causes of and treatments for autism, including potential
environmental causes. This amounts to
an increase of at least 50% of current
federal spending on autism research.
• The CAA authorizes $69 million
over 5 years to the CDC for autism
epidemiology and awareness activities.
• The CAA authorizes $210 million
to Health Resources and Services
Administration (HRSA) for improvements in autism education, early
detection and early intervention. To
receive federal assistance to conduct
these programs, the Governor of
each state is asked to designate a lead
agency for autism activities and to use
public outreach tools such as toll-free
telephone numbers, the Internet and
targeted mailings.
• The CAA restructures the InterAgency
Autism Coordinating Committee
(IACC), charging the new IACC
with developing, and annually reporting to Congress, a strategic plan for
the conduct of autism research. The
IACC shall include not less than 1/3
public members (at least two of which
shall be personally affected by autism,
including one person diagnosed with
autism and one parent of a person
diagnosed with autism).
• The Senate bill (S.843) was sponsored by Senators Rick Santorum (RPA) and Christopher Dodd (D-CT).
The House version was brought to the
floor by Congressman Joe Barton (RTX), Chair of the House Committee
on Energy and Commerce. The House
bill was originally introduced by
Congresswomen Mary Bono (R-CA)
and Diana DeGette (D-CO).
• S.843 first passed the Senate by unanimous consent in August 2006. Senate
action on the revised House version
followed on December 7, 2006.
Please Note: The Combating Autism
Act only authorizes the appropriations;
actual funding to implement the law
will be established by appropriations
legislation developed by House and
Senate Subcommittees.
Information obtained from
AutismSpeaks. For more information,
see www.autismspeaks.org/supportlegislation/combating_autism_act.php.
SAVE THE DATE
The American Thoracic Society Public Advisory
Roundtable is pleased to invite you to our first annual forum
Breathing Better with the ATS
Saturday May 19, 2007
from 1 p.m. to 4 p.m. at the
Parc 55 Hotel in San Francisco, CA
Hear from patients and experts in the pulmonar y
community and network with them afterward. The
gathering will be held in conjunction with the ATS
International Conference. Hors d’oeuvres will be provided
at the meeting.
Please RSV P by email to [email protected] at your
convenience but not later than March 30, 2007. If you have
any questions contact Karen Belgiovine (212) 315-8640
P E R S P E C T I V E 10
Please remember the TS Alliance Endowment Fund in Your Estate Plans . . .
Kathy Trapp
T
housands of years ago, caring individuals
assured the safet y and well being of their
villages and communities by tending the fire
overnight. The light from the fire kept enemies and
foes at bay while the people of the village quietly slept
through the night. Many generations later, it is no
longer necessary for individuals or families to keep the
fire burning all night. But there are still people who
help protect and support the future.
The TS Alliance community has its own “Keepers
of the Flame” designation for those individuals and
families that have designated a planned gift through
their wills or estate plans, including Kathy Trapp,
an adult with tuberous sclerosis complex (TSC) and
Lymphangioleiomyomatosis (LAM).
Kathy has lived with TSC her entire life and is the
proud mother of a daughter in college, who also has TSC.
But unlike Kathy’s great grandfather, her grandfather
and even her mother, Kathy has benef ited from the
advances made in health care and in TSC research. To
her credit, Kathy even gave one of the principal TSC
researchers, Dr. Lisa Henske, one of her kidneys in
1996 when angiomyopilomas caused critical
bleeding. The 1996 operation, a double
nephrectomy, was one of the first times
a TSC research program received an
entire “fresh” kidney straight from the
operating room.
Today, she credits the Tuberous
Sclerosis Alliance with providing
much-needed support and
information for her health care
needs. After consulting with her
husband, Dick, and as a measure
of her gratitude, she has left a gift
in her estate plan to the Tuberous
Sclerosis A lliance Endowment
Fund.
Please remember the Tuberous
Sclerosis A lliance Endowment
Fu nd w he n pl a n n i n g f or t he
future by designating a gift to the
11 S P R I N G 2 0 0 7
Kathy and Dick Trapp
organization and join others – like Kathy Trapp – as
“Keepers of the Flame.”
For more information, contact Nancy Taylor, TS
Alliance CEO, at (800) 225-6872.
Honorariums (October 2006 – December 2006)
You can honor a friend or family member for an important occasion with a gift to the TS Alliance. It is a wonderful way to send a birthday or anniversary wish, or congratulations for retirement, a job well done, graduation, etc. Please include the name and address of the
individual being honored so that acknowledgement of your kind donation can be sent.
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Mr. and Mrs. Mike Green
Mr. and Mrs. James Hoskins
Mr. and Mrs. Thomas L. Hurst
Mr. and Mrs. Christopher D.
Johns
Ms. Jewell Kerr
Mr. and Mrs. Danny Nicely
Mr. and Mrs. Richard H. Nicely
Ms. Connie L. Seal
Mr. and Mrs. Kirk D. Steele
Mr. and Mrs. Lucas Stephens
Ms. Leslie Wolfenbarger
Alexa LaRue
Ms. Amanda Greco
Kevin Jackson
Ms. Kathryn Butler
Mr. and Mrs. Robert Keller
Mr. and Mrs. Andrew Laszlo
Dr. and Mrs. Maurice H. Laszlo
Arianna James
Ms. Amy Dodd
Dr. Sally James
Mr. James Rinehart
Carl E. Jensen
Mr. and Mrs. Tim Guest
Annie Johnson
Mr. and Mrs. David S. Alden
Mr. and Mrs. Tom Baldwin
Mr. and Mrs. Burton A. Ford, Jr.
Mr. and Mrs. Carl L. Godman
Mr. and Mrs. Robert Graham
Ms. Sally K. Jones
Mr. and Mrs. Bernard C. Joyce
Mr. and Mrs. Edward J. Kehoe, Jr.
Mr. and Mrs. Patrick J. Marshall
Mr. and Mrs. James F. Mulcahy
Mr. and Mrs. James J. O’Halloran
Mr. and Mrs. William T. Redgate II
Stratford Poker Group
Mr. and Mrs. Harold Xavier
Mr. Pierluigi Zappacosta and Ms.
Enrica D’Ettorre
Ken Johnson
Mr. and Mrs. James Anders
Mr. and Mrs. Harold Xavier
Hayden A. Joyce
Farallon Consulting, L.L.C.
Ms. Barbara Smith
Kay Kaalberg
Ms. Sally Kaalberg
Kate J. Kane
Mr. David N. Kane
13 S P R I N G 2 0 0 7
Mr. and Mrs. William C. Blakney
Mr. Jorge DeLaHoya and Ms.
Brenda A. Miranda
Mr. Richard W. Delaney
E Beltran Trust
Mr. and Mrs. Matthew
Quattlebaum
Phyllis A. Leist
Mr. and Mrs. Jimmy K. Hanna
Jacob Levine
Mr. Kenneth S. Jaffe
Lauren Levine
Mr. and Mrs. Richard Palanker
Hannah Linsin
Mrs. Sharon Abramson
Mr. and Mrs. Seymour Applebaum
Dr. Marvin Berman
Mr. and Mrs. Bert Blieden
Mr. and Mrs. Joseph Borden
Mr. and Dr. Norman Brainin
Mr. and Mrs. Robert Byron
Mr. Scott Byron
Ms. Barb Canter
Mr. and Mrs. William T. Carbone
Mr. and Mrs. Marvin Chaiken
Mr. C Everett Chambers Jr.
Mr. Robert E. Claver
Mr. Richard C. Cooper and Ms.
Barbara Sheridan
Mr. and Mrs. Robert E. Cowhey
Mr. and Mrs. Lawrence J. Devitt
Mr. and Mrs. Gordon K. Empting
Ms. Gitta Fajerstein
Mr. and Mrs. Mark Freeman
Funeral Direction, Inc
Mr. and Mrs. Steven E. Goldsher
Mr. and Mrs. Leon Gurny
Mr. and Mrs. Stephen Harburg
Mr. Lee Heinrich
Mr. and Mrs. Edwin Johnson
Mr. and Mrs. Sheldon Karon
Mr. and Mrs. Andy Katlin
Mr. and Mrs. Donald J. Kaufman
Ms. Janet Kaufman
Mr. and Mrs. John J. Kemish
Mr. Robert A. Kohl
Dr. and Mrs. Colman R. Kraff
Mr. and Mrs. Sheldon Lebold
Aubreyanne Mayrsohn
Ms. Sheila E. Alexander
Florida Welding Fabricators and E
Mr. and Mrs. Donald E.
Handelman
Mr. and Mrs. Stuart N.
Handelman
Mr. and Mrs. James S. Knopke
Mr. and Mrs. Philip Rosen
Mr. and Mrs. Saul Rosenbaum
Mr. and Mrs. Edward L. Winkler
Sophia Mayrsohn
Mr. and Mrs. Alan Marcus
Jamie E. McAdoo
Mr. Myron Rapaport
Anthony Rasavage
Mr. Jayaprakash N. Gola
Mr. and Mrs. R.M. Storey
Martha Ratner
Dr. and Mrs. Sheldon Watnick
Casey Revman
Mr. and Mrs. Joseph P. Spera
John “Thorpe” T. Richards
Mr. Eugene Bruns
Mr. and Mrs. Paul J. Kiernan
Mr. Robert P. Trout and Ms. Janet
Studley
Mr. and Mrs. Richard H.
Blackman
Dr. Susan McAdoo
Christine Ritchie
John McClelland
Sidney Rouse
Hugh McDonald
Mr. and Mrs. Charles McFadden
Mr. and Mrs. James S. Carreras
Mr. and Mrs. Jason P. Hendrick
Mr. and Mrs. Timothy S. Honaker
Mr. and Mrs. Ronald G. Smith
Nathan A. Mehrer
Grace Rubeck
Mr. and Mrs. Joe U. Carrillo
Ms. Dorothy Franklin
Ms. Gloria Huckeby
Mr. and Mrs. James T. Rakes
Mr. and Mrs. Ben D. Stevens
Mr. and Mrs. Craig Yoshimoto
Mr. and Mrs. Tyler Stevenson
Joshua Michael
Ms. Jo Samuels
Mr. and Mrs. Walter O. Michael
William R. Samuels
Harrison R. Miles
Ms. Jo Samuels
Mr. and Mrs. Gerald Green
Mr. and Mrs. Robert M. Hart
Jessica L. Sanders
Mr. and Mrs. Joseph McDonald
Ashlin McFadden
Ms. Joan Lansky
Mike Rogers
Joseph Rubolotta
Dr. and Mrs. Donald E. Hillner
Anna Russell
Mr. and Mrs. Valentine J. Pust
Barbara T. Samuels
Sandra O’Brien
Mr. and Mrs. Billy W. Bedsole
Mr. and Mrs. Dick Boyette
Mr. and Mrs. Danny Brabham
Mr. and Mrs. Billy Bush
Mr. and Mrs. Donald Cline
Mr. Scott Elliott
Mr. Woodrow J. Farrington
Mr. and Mrs. John Fergus
Ms. Esther A. Gilley
Mr. and Mrs. Roy W. Hall
Mr. and Mrs. Bob Hapner
Ms. Kim W. Leverett and Ms.
Sheila Leverett
Mr. and Mrs. Billy Ludlam
Mr. Allen Lux
Mr. and Mrs. Harvey A. Lux
Mr. and Mrs. Ronnie Marshall
Mr. and Mrs. Ronnie Money
Mr. and Mrs. Billy Moring
Ms. Martha I. Sanders
Mr. and Mrs. Ira Skipper
Mr. and Mrs. John A. Starling
Mr. John R. Starling
Styles By Carole, Inc
Ms. Nancy Haskins
Holly R. Saville
Matthew Page
Ms. Janet Meyerson
Anonymous
John M. Saville
Phillip Macri
Eric Parkes
Ms. Janet Meyerson
Baltimore American Mortgage
Corp
Mr. and Mrs. Roger Wilson
New York State Iron Workers Dist
Sweeney and Harkin Carpentry
Mr. and Mrs. Edward Walsh
Carter Schmidt
Ron Marion
Patricia J. Parsons
Mr. and Mrs. Stephen P. Myers
Ms. Paula Conrad
Mr. and Mrs. Wayne P. Larsen
Mr. Edward Pennington
Mr. and Mrs. Brent A. Schmidt
Morgan Marlow
Kristina Popkin
Stephen F. Schmitt
Mr. and Ms. Matthew T. Marlow
Ms. Betty J. Davidson
Mrs. Gerianne Evans
George Martindale
Jack Poutasse
Charles Schumann
Dr. and Mrs. William F. Flynn
Mr. and Mrs. Edward F. Schlich
Mr. Peter Rapaport
Mrs. Barbara F. Zimmerman
Cameron T. Powell
Mr. Robert S. Webb
Anonymous
Mr. and Mrs. Jack D. Scott
Krisitin Query
Julie Seaman
Ms. Kristin Wolfram
Howell First Aid & Rescue Squad #1
Austin Rainey
Kylie Seggerman
Matthew Mastbaum
Mr. and Mrs. Mark English
Mr. and Mrs. Ray Marvel
Ms. Nadine A. Klemens-Gilmore
Anonymous
Sheila Marton
Mr. Bruce Maasbach
Chelsea Miller
Mr. and Mrs. Aurelio S. Gallegos
Pediatric Cardiology Center
Nadra Mlynarczyk
Mr. and Mrs. James J. Brosnan
Mr. and Mrs. Richard D. Olson
Alex Montgomery
Ms. Joan Holthouse
H. Taylor Morrissette
Daniel M. Murdza
Mrs. Virginia LaMarche
Lauren Niemeyer
Mr. and Mrs. Michael Niemeyer
Victoria Noviski
Mr. and Mrs. K.R. Heath
Brenna Scott
Honorariums (October 2006 – December 2006) continued
Mr. and Mrs. Saul Pleeter
Mr. and Mrs. Ronald A. Sandoval
Mr. and Mrs. Bill Waltz
Joseph Stammelman
Benjamin Shapiro
Mr. and Mrs. Fred Hogenboom
Mr. and Mrs. Art Smit
Mr. and Mrs. Gerard Steenman
Mr. Marty Morey
Mr. and Mrs. Vernon C.
Ruschmann
Ms. Janelle L. Young
Mr. and Mrs. Robert A. Payne
Mr. Martin P. Smith
Mr. and Mrs. Don Thompson
Mr. and Mrs. Michael R. Trundle
Mr. and Mrs. Ed Ullery
Tavi Yokoyama
Ryan Turner
MW Group Ltd
Alyssa Youmans
Roncari Express Valet Parking
Ms. Janice L. Gellhaus
Ms. Carla Heck
Rosemary A. Sterk
Kurt T. Ullrich
Mr. and Mrs. Ed Siegert
Ms. Anita Ullrich
Colin Stoddard
Mabel Unsinn
Mrs. BJ Coleman
Erin Stromek
Michael Valdez
Emmory R. Shapses
Ms. Lynn Emme
Mr. James Shriver
Mr. and Mrs. Marc Shapses
Emily B. Szilagyi
Jo Ann Wacht
Sarah Shelly
Mr. and Mrs. Fred Krinsky
Peter Sherman
Ms. Marcia Burstein
Mr. and Mrs. Edward E. Chait
Mr. Hal Neiman
Mr. and Mrs. Don D. Porteous
Brigitte Thalheimer
Thomas D. Sherman
Sartomer
Jeb Ward
Mrs. Susan I. Sinot
Bryson S. Thomas
Mr. and Mrs. T. Robert Ward Jr.
Meghan J. Sirinek
Ms. Catherine N. Sweeney
William G. Ward
Mr. and Mrs. Roger Murphy
Mr. and Mrs. Robert Peiffer
Mark P. Thomas
Mr. and Mrs. David Herrington
Mr. Wallace R. Thomas
Jay P. Wareham
Meagen Skaggs
Mary Thomas
Mr. and Mrs. Richard D. Pace
Ms. Kathleen C. Baker
Amanda Wiezalis
Drew Sklarin
Ashley Triemer
Mr. and Mrs. William P. Stebbins
Mr. and Mrs. Donald G. Loonin
Mr. and Mrs. William L. Triemer
Ashley Wiezalis
Ethel Slayen
Andrew R. Trundle
Mr. and Mrs. William P. Stebbins
Mr. and Mrs. Scott A. Bright
Mr. and Mrs. John A. Cocking
Mr. and Mrs. Frank R. Faulds
Mr. and Mrs. Randy E. Hazard
Mr. and Mrs. Dennis M. Manner
Mr. and Mrs. Dennis W.
McCarthy
Mr. and Mrs. Alan D. Michael
Ronald Wilt
Anonymous
Mr. and Mrs. Harvey L. Flax
Mr. Joel A. Getz
Mr. Ralph Hattenbach
Ms. Carol D. Hobart
Mr. and Mrs. Henri B. Schkud
Mr. Henry Shapiro and Mrs.
Christy Hobart
Mr. and Mrs. Joseph F. Weber
Mr. and Mrs. Robert R.
Reidenbaug
Olivia Smiley
Mr. Emanuel C. Hoover
Mr. and Mrs. Robert E. Apple
Danielle Stammelman
Ms. Kathleen D. Dick
Mr. and Mrs. Louis Lebedin
Mr. Ed Garcia and Mrs. Judy
Sutter
Ms. Kathleen D. Dick
Julia Steenman
William Steinka
Alice Waits Gibbon
Mr. Ralph H. Gibbon
David C. Walker
David Wing
Mr. and Mrs. Gordon A. Palmer
Thomas Winge
Ms. Frances Cole
Ms. Janice K. Eastman
Mr. and Mrs. Harvey
Huggenberger
Mr. and Mrs. Greg A. Altberg
Ms. Veronica H. Ancy
Mr. and Mrs. Arthur A. Antiporda
Ms. Christina Baik
Mr. and Mrs. Richard D. Benik
Mr. and Mrs. A Bistline
Mr. and Mrs. Michael D. Breen
Ms. Luellen Casler
Ms. Shonia L. Cline-Peachey
Colorado Springs Civitan Club
Mr. and Mrs. L.C. Davenport
Mr. and Mrs. William S. Finley
Mr. and Mrs. Michael F. Flynn
Ms. Janice A. Forte
Ms. Marjorie Frahlich
Mr. and Mrs. Paul V. Franke
Mr. and Mrs. John R. Gendreau
Mr. and Mrs. Douglas J. Glass
Mr. and Mrs. Rex L. Glass
Mr. and Mrs. John W. Goff
Mr. and Mrs. Gary W. Gressett
Ms. Sally L. Groff
Mr. and Mrs. William S. Grubb
Ms. Corlyn L. Hale
Ms. Karri W. Haw
Ms. Sherry A. Hike
Ms. Beth Hubbard
Mr. Jeffrey S. Huttenmeyer and
Ms. Juliana G. Barnard
Ms. Joyce J. Hyden
Ms. Lynn M. Isham
Mr. and Mrs. Kris Kliewer
Ms. Diane Klinkerfues
Mr. Jeffery S. Kramer
Ms. Valerie S. Layman
Mr. and Mrs. Joe H. Martin
Mr. and Mrs. Stephen R. Mason
Mr. and Mrs. Jorge M. Mayor
Mr. and Mrs. Ron D. McCall
Ms. Marilyn J. Moore
Mr. Robert F. Randall
Mr. and Mrs. Todd R. Remington
Mr. and Mrs. William H. Rohrs
Ms. Jennifer L. Roswell
Ms. Tanya Scherer
Mr. and Mrs. Lorne M. Sedlacek
Mr. and Mrs. Floyd T. Sekiya,
DDS
Mr. and Mrs. Gary P. Shrader
Ms. Mari M. Skora
Ms. Sheri Stammer
Mr. and Mrs. Steven D. Steele
Mr. and Mrs. Robert Steinbach
Ms. Jennifer A. Stuerke
Sullivan Productions, Inc.
Mr. James O. Thompson
Ms. Dorothy E. Thurber
Ms. Candace A. VanDer Schaaf
Mr. and Mrs. David A. Ward Jr.
Mr. and Mrs. Douglas A. White
Mr. and Mrs. Otto Wilson
Mr. Patrick J. Wisneski
Mr. and Mrs. Roland Youmans
Mr. and Mrs. William A. Youmans
John Zarbetski
Ms. Emmaria Galliano
Mr. and Mrs. Michael F.
Wyzykowsk
Paul Zarbetski
Memorials (October 2006 – December 2006)
Contributions are given to the Tuberous Sclerosis Alliance at the request of family members in memory of their loved ones. We extend
our sympathies to the family and friends of those memorialized below. These generous contributions support the progress of our mission
to find a cure for tuberous sclerosis complex.
Denzil Anderson
Dr. and Mrs. James Lebamoff, MD
Mr. Jerome Welter
Ms. Carrie S. Wetter
Robert S. Baranowski
Mrs. Mary Ann Baranowski
Mr. and Mrs. Henry J. Corback
Mr. James DeGiosafatto Sr.
Mr. and Mrs. F.R. Dudash
Ms. L Kaunitz
Mr. and Mrs. Michael McDonnell
Ms. Elizabeth Peer
Mr. and Mrs. Paul R. Popovich
Henrietta M. Beard
Mr. and Mrs. Jeff Beard
Ms. Miriam L. Sweigart
Vaughn Brancel
Briggsville United Methodist
Memorial Fund
Heather J. Buntrock
Mr. and Mrs. Damien L. Amore
Mr. and Mrs. J. McNeill Anderson
Anonymous
Mr. and Mrs. Joseph J. Anselmo
Reverend Donna Atkinson
Ms. Carolyn Awe
Mr. and Mrs. Bernard Beem
Mr. and Mrs. Gregory W. Beem
Mr. and Mrs. Paul R. Beem
Mr. and Mrs. W. Wayne Beem
Mr. and Mrs. Gerald Behnke
Mr. and Mrs. Mark Beitzel
Mr. and Mrs. Ronald Bergsma
Mr. and Mrs. Henry Boesch
Mr. and Mrs. Raymond T.
Bollendor
Mr. and Mrs. Stephen T. Bouas
Ms. Donna Brandel
Mr. and Mrs. Gary Brooks
Mr. and Mrs. Kevin Brothers
Ms. Eileen E. Bruton
Mr. and Mrs. Loren Buntrock
Mr. and Mrs. Paul Buntrock
Mr. and Mrs. Robert S. Burt
Mr. Ted M. Byers
Mr. and Mrs. Jeffrey B. Carlisle
Mr. Jerry Christian
Mr. and Mrs. Wesley Clark
Ms. Anita M. Dean
Mr. and Mrs. Dennis F.
Debennette
Ms. Katherine A. Dempsey
Ms. Nancy D. Dempsey
Mr. and Mrs. Gehl Devore
Dexter C Miller Agency
Mr. and Mrs. Jeffrey J. Dick
Mr. and Mrs. Charles A. Draper
Ms. Toni Drissel
Mr. and Mrs. Richard W. Edwards
Ms. Kathleeb Evert
Ms. Janelle Foszcz
Mr. and Mrs. Louis G. Fowler
Mr. and Mrs. Harold W. Frush
Mr. and Mrs. Lawrence R. Gessler
Ms. Jennifer Golwitzer
Mr. and Mrs. Terry E. Gordon
Ms. Janice Gries-Griffin
Mr. Arthur Griffith
Ms. Jean A. Grosso
Mr. and Mrs. Marty Guy
Mr. and Mrs. Neal Harrison
Mr. and Mrs. Tim Heeter
Mr. and Mrs. Kenneth H. Henke
Mr. and Mrs. Charles S. Herbst
Ms. Shirley Hill
Ms. Debbie Jastrom
Mr. and Mrs. Gary A. Jeffson
Mr. and Mrs. Mark A. Jensen
Mr. and Mrs. Dennis G. Johnson
Mr. and Mrs. Gregory S. Johnson
Mr. and Mrs. Ronald Jurkacek
Mr. and Mrs. David Keiler
Ms. Ammie M. Keith
Ms. Shannon Killeen
Mr. Craig Kmichik
Mr. and Mrs. David S. Koetz
Mr. and Mrs. Ira J. Krause
Mr. and Ms. Bradley J. Kucharski
Ms. Morgan L. Kuchnia
Mr. and Mrs. Richard Kuchnia
Mr. Albert J. Kuhlmey
Mr. and Mrs. Douglas W. La Belle
Mr. and Mrs. Victor E. Lapendick
Mr. and Mrs. Vernon N. Lee
Ms. Sandra A. Leech and Ms.
Leticia A. Best
Mr. and Mrs. Douglas L. Leffler
Mr. Jon Lother
Mr. and Mrs. Brian Lother
Mr. and Mrs. Troy Lother
Mr. and Mrs. Roger R. Luther
Ms. Katie R. Mackie
Mr. and Mrs. Ione C. Mainord
Mr. and Mrs. Steven Malecha
Ms. Kari Meyer
Millburn West
Mr. and Mrs. Gary D. Miller
Mr. and Mrs. Tom Morton
Ms. Eileen G. Neave
Mr. and Mrs. Robert M. Neave
Mr. and Mrs. Gregory A. Nugent
Oak Crest School
Mr. and Mrs. Keith A. Olsen
Mr. and Mrs. Patrick L. Ostrander
Mr. and Ms. David J. Overman
Mr. and Mrs. Kenton L. Owenson
Mr. and Mrs. Todd Passehl
Ms. Danielle M. Paster
Mr. and Mrs. Perry V. Plescia
Mr. and Mrs. James Poucher
Ms. Jane A. Powell
Ms. Judith A. Power
Mr. and Mrs. John S. Putra
Mr. and Mrs. Todd A. Renn
Mr. and Mrs. D.P. Richmond
Mr. and Mrs. Jeffrey T. Ropers
Mr. and Mrs. Mark Rymer
Mr. and Mrs. Matthew A. Rymer
Mr. and Mrs. Rick Sarbacker
Mr. and Mrs. Kurt L. Sauer
Ms. Wendy Scott
Mr. and Mrs. Ronald R. Shaffer
Ms. Lisa A. Shaw
Mr. and Mrs. Dean L. Steele
Mr. and Mrs. David E. Stevens
Ms. Shirley P. Stewart
Mr. and Mrs. Douglas W. Stiles
Mr. and Mrs. Donn Stiner
Mr. and Mrs. Edward A. Streed
Ms. Kathy D. Stryker
Mr. and Mrs. Richard K.
Studebake
Ms. Karen D. Sweeting
Mr. and Mrs. Mark Thorn
Mr. Rob Vanderlamp
Mr. and Mrs. P.A. Vedra
Ms. Glenda M. Ward and Ms.
Annette M. Swank
Ms. Lisa A. Weiner
Mr. and Mrs. Gregory Whiteside
Mr. and Mrs. William C. Widen
Mr. and Mrs. David B. Wiseman
Mr. and Mrs. Walter Wonoski
Mr. and Mrs. Peter L. Wright
Mr. and Mrs. Mitchell J. Zemanek
Lilian Burmeister
Mr. and Mrs. Robert A. Burmeister
Mr. James DePalma
Ms. Louise DeVito
Ms. Rita Lindsey
Memorials (October 2006 – December 2006) continued
Mr. and Mrs. Michael Luciano
Mr. and Mrs. Benedict D. Macri
Mr. and Mrs. John Petrocelli
Mr. and Ms. Anthony Sclafani
Ms. Elizabeth Zerega and Mary
Alice Zerega
Ms. Mary E. Campbell
Ms. Babette R. Hiller
Mr. and Mrs. William Kopp
Mr. and Mrs. Donald S. Kruto
Mr. and Mrs. Paul P. Malchuk
Mrs. Patricia McInerney
Mr. and Mrs. Bernhard Palm
Ms. Jocelyn H. Pritchard
Ms. JoAnn Scott
Devorah E. Chaya
Florence Gentile
Mr. and Mrs. Scott Moskowitz
Ms. Concetta A. Babicz
Ms. Betty J. Davidson
Mr. Ronnie Hale
Mr. and Mrs. Paul Lebranche
Mr. Alfred J. Pucillo
Ms. Michelle L. Pucillo
Rebecca J. Campbell
Irene K. Christie
Mr. and Mrs. Gary J. Christie
Mr. and Mrs. Duane A. Gordon
Mr. and Mrs. Malcolm Hughesdon
Mr. and Mrs. Paul Kennedy
Mr. and Mrs. Herman E. Labenz
Mr. and Mrs. Raymond E. Majszak
Mr. and Mrs. James Mikosz
Ms. Vicky Richardson
Mr. and Mrs. Henry Roman
Mr. and Mrs. Michael Ugorowski
Mr. and Mrs. Warren L. Weier Sr.
Mr. Andrew E. Wujcik
Elizabeth Citrola
Mr. and Mrs. Scott R. Alexander
Mr. and Mrs. Stephen Bies
Mr. and Mrs. William H. Clark
Ms. Eleanor D’Azzo
Mr. and Mrs. Frank J. Franze
Mr. Lester J. Gillen
Mr. Francis Lofaro
Mr. and Mrs. Mark Lowen
Mr. and Mrs. Stephen L. Martin
Ms. Anne Matero
Mr. Siobhan Mulroy
Mr. and Mrs. Scott J. Oggeri
Mr. and Mrs. William O’Loughlin
Mr. and Mrs. Alan Stein
Mrs. Stephanie Stewart
Mr. and Mrs. Hugh M. Stone
Mr. Stephen Wener
Ms. Diane Yanniello
Edward Goldstein
Mr. and Mrs. Marc Blitzer
Mr. and Mrs. Larry Donsky
Mr. and Mrs. David S. Ellman
Mr. and Mrs. Steve R. Jacobs
New York State Iron Workers Dist
Ms. Myra Shapiro
Mr. and Mrs. Paul Shellman
Mr. and Mrs. Eric Sussman
Ms. Patricia A. Travers
Mr. and Mrs. Edward Walsh
Mr. and Mrs. Patrick R. Kling
Mr. J Pearce
Mr. and Mrs. Jim Wolzrichter
Sarah M. Midgett-Miller
Ron Smiley
Mr. and Mrs. James C. Franciskovi
Mr. Guy Futrell
Mr. Karl Georgi
Mr. Dean Hagerty
Mr. Dave Hardin
Ms. Joan James
Mr. Steve Loofbourrow
Mr. John Mathis
Mr. Nick McDuffie
Ms. Catherine McKalip-Thompson
Ms. Maureen Mendez
Mr. Dale Morgan
Purvis Systems Incorporated
Ms. Cynthia Rivera
Mr. Don Rochester
Ms. Sandra Sawyer
Ms. Marilyn Trent
Mr. and Mrs. Robert E. Apple Jr.
Dr. Tracy Ballin
Ms. Sharon Brimner
Ms. Gail Burke
Mrs. Kari L. Carlson
Mrs. Susan Chatlos
Ms. Melissa Conway
Mrs. Jennifer Dotson
Mr. Mike Fox and Ms. Theresa B.
Hunt
Mr. and Mrs. Michael Gregg
Mr. and Mrs. John Hayna
Mr. Tye Hoffman
Mr. and Mrs. James R. Johannsen
Mr. and Mrs. Jeffrey Londres
Mr. and Mrs. Kenneth C.
Longheed
Mr. and Mrs. Thomas E.
Lucaccioni
Mr. Robert Macko
Marquardt Memorial Manor, Inc
Mr. and Mrs. Scott Olson
Mrs. Janine Rauscher
Mr. Luis A. Rosado
Ms. Diane Sinico
Mrs. Nancy Taylor
Mr. and Mrs. Gary R. Urbahn
Village of Streamwood
Clayton McDermaid
Jim Nolan
Mr. and Mrs. Thomas Foy
Hjordis Odegaard
Mr. Peter B. Abbey
Ms. Norma Jean Kincaid
Levy & Droney PC
The Shields Corporation
Ms. Eva J. Kasperson
Mr. and Mrs. Georg M. Kjonsvik
Mr. and Mrs. Olav T. Lunde
Ms. Kathleen McClain
Norwegian Seamen & War
Veterans
Mr. and Mrs. Gordon E. Odegaard
Ms. Winnifred P. Pedersen and
Ms. Connie Hofstad
Sons of Norway
Ms. Dagny S. Swanson
Vestkystens Nordmorslag
Romsdalsl
Joseph Holubowicz
Cara Pahnisch
Mr. and Mrs. William G.
Skurzewsk
Ms. Marilyn L. Bartel
Mr. and Mrs. David T. Derschan
Mr. and Mrs. Harry L. Forsyth
Ms. Mary Johnson
Ms. Ruth D. Klessen
Mr. and Mrs. Bartt Nicholson
Mr. Mel Sanders
Mr. and Mrs. Reg D. Young
Diane Green
Mr. and Mrs. Roger A. Miles
Michael H. Green
Mrs. Miriam S. Green
Tim Holinka
Dorothy Smith
Mr. and Mrs. Thomas Hopper
Robert P. Steffens
Mrs. Judith A. Steffens
Arthur Stehle
Mr. and Mrs. Lewis Polin
Mr. and Mrs. Gerald C. Allen
Mr. and Mrs. Scott A. Bright
Mr. and Mrs. Tim Burchett
Mr. and Mrs. John A. Cocking
Mr. and Mrs. Frank R. Faulds
Mr. and Mrs. Dennis M. Manner
Mr. and Mrs. Dennis W. McCarthy
Ms. Etta M. McClure
Mr. and Mrs. Robert A. Payne
Mr. Martin P. Smith
Ms. Ann E. Spreeman
Mr. Don Thompson
Mr. and Mrs. Michael R. Trundle
Mr. Ed Ullery
Thomas A. Plein
Sally Steinglass
Thomas A Plein Foundation LTD
Dr. and Mrs. Herbert Marton
Mr. and Mrs. Alan Freeman
Lauren Polyanski
Kamran Teheranchi
Mr. and Mrs. Patrick Rossetti
Ms. Cathy A. Zardas
Frances Lampley
Mr. and Mrs. Cyrus Teheranchi
Philmore Divine
Marc Laxman
Mr. and Mrs. Charles Fleshman
Harold E. Erickson
Vicky Lederman
Mr. Robert Erickson
Mr. and Mrs. William H. Furdon
Mr. and Mrs. John T. Giles
Mr. and Mrs. Robert W. Hungate
Ms. Edwina W. Schuler
Mr. Brian J. Schwartz
Mr. and Mrs. Bruce C. Smith
Mr. Bernard Vaillette
Ms. Shirley Hyman
Mr. and Mrs. John Dippel
Mr. and Mrs. Robert F. Fier Sr.
Greenbush American Legion
Mr. and Mrs. Randy Gritt
Mr. and Mrs. Michael W.
Polyanski
Catherine A. Liapis
Ms. Pomper
Mr. and Mrs. Kenneth Wyer
Mr. and Mrs. George Liapis
Mr. and Mrs. Paul Wolnik
David Truan
Quemal Maksout
Jack Rachleff
Mr. and Mrs. Patrick R. Kling
Mr. and Mrs. Ronald S. Maksout
Mr. and Mrs. David W. Parkes
John D. Walker
Sherrill A. Malesky
Kenneth Rose
Mrs. Audrey O. Malesky
Mr. and Mrs. James Dunne
Ms. Marie Dykstra
Mr. and Mrs. James A. Haynes
Marianna Forgione
Mr. and Mrs. Steven Correll
Ms. Sue A. Fortney
Mr. and Mrs. Patrick T. Hardesty
Mr. and Mrs. Henry F.
Kleinknecht
Mr. and Mrs. Joseph F. Mole, Jr.
Mr. and Mrs. Bernard A. Rausch
Ms. Kimberly W. Robards
Ms. and Mrs. Florence T. Spalding
Ms. Mary W. Wyer
Mr. and Mrs. Marvin Altenburg
Mr. and Mrs. Herbert P. Meier
Mr. and Mrs. Charles M. Nusser
Mr. and Mrs. John A. Panars
Ms. Cathy Terry
Gunther Imke
Ms. Geraldine A. Gagne
Mr. and Mrs. Daniel J. Sandman
Burton Cohen
Julie A. Kraft
Mr. and Mrs. Irving Kuber
Mr. and Mrs. Gabriel Levine
Ms. MiMi Nicholson
Mr. and Mrs. Donald C. Pudell
Mr. and Mrs. Joseph Scherzer
Mr. and Mrs. Steven F. Bahr
Mr. and Mrs. Don E. Ballard
Mr. and Mrs. Dale L. Hankins
Mr. and Mrs. Jerry A. Henning
Ms. Kim Kraft
Ms. Lynne A. Nelson
Mr. and Mrs. Rod Secoy
Ms. Mary W. Tomerlin
Ms. Patricia C. Waters
Richard Connors
Mr. and Mrs. Eino A. Anttila
Ms. Linda G. Connors
Ms. June Fredrickson
Mr. and Mrs. Michael J. Moore
Raymond Kravetz
Mary J. Cunio
Mrs. Lucille Forgione
Sam Friedman
Anonymous
Ms. Frost
Mr. and Mrs. Alan Freeman
Sarah Gaffney
Mr. and Mrs. Peter M. Fertig
Gordon Gebhardt
Mr. and Mrs. Ron Belke
Mr. and Mrs. Franklin R.
Brumwell
Mr. and Mrs. Andrew P. Duffy
Mr. and Mrs. James Enrietto
Mr. and Mrs. Donald J. Fawcett
Ms. Norma J. Garibaldi
Ms. Joan Grishaber
Mr. and Mrs. Herbert P. Guck
15 S P R I N G 2 0 0 7
Mr. and Mrs. Charles A. Graham
Judith E. Martin
Paul Parnagian
Mrs. Darlene Franzone
Jean Pind
Mr. Frankie Schott
Maria Pirro
Bernard Rosenberg
Mr. and Mrs. Melvin Strom
Frank J. Ruocco
Mrs. Francine J. Hillier
John Schaffer
Mr. and Mrs. Roger A. Miles
Jillann Schleich
Elsie McAdoo
Ms. Jill Abbott
Mr. and Mrs. Robert A. Burns
Mr. and Mrs. William S. Campbell
Eli Terrys Retirees Fund
Ms. Linda Leighton
Ms. Aleena H. McAdoo
Mr. and Mrs. Russell McCain
Mr. Lewis J. Mirante
Dorothy Seward
First Presbyterian Church
Rachel J. Shaft
Mr. and Mrs. William L. Dunn
Mr. M.A. Giggy
Mr. and Mrs. J.W. Jones
Mr. and Mrs. Max D. Miller
Joseph M. Torossian
Mr. and Mrs. E Philip Brown
Ms. Patricia A. Daves
Mrs. Darlene Franzone
Joseph F. Trefilek
Mr. and Mrs. Todd Rhodes
Mr. and Mrs. CR Schorr
Ms. Julia A. Smyers
Mr. and Mrs. Robert E. Warner
Ms. Helen Yorzinski
Amy Weber
Mr. and Mrs. Thomas H. Landry
Albert Weeks
Mr. and Mrs. Don Franklin
William Weissler
Mr. and Mrs. Mark L. Weissler
Jeanne Wheeler Parish
Mr. and Mrs. Charles A. Graham
Julia Wilde
Mr. and Mrs. Joseph M. Torossian
Brandon D. Willbanks
Mr. and Mrs. Ronald A. Covilli
William B. Wilson
Mrs. Nancy M. Wilson
Phyllis L. Wing
Mr. and Mrs. Rudolph C. Haefeli
Mr. and Mrs. Charles D. Huskey
Mr. and Mrs. Gordon A. Palmer
Mr. and Mrs. Nicholas Vignovich
Chester Yaszczemski
Ms. Alice C. Belfiore
Mr. and Mrs. John Blair
Mr. and Mrs. Chester Blaze
Mr. and Mrs. Miguel E. Cabanela
Ms. Dolores O. Dowe
Mr. and Mrs. Michael Dowe
Mr. and Mrs. John F. Dunphy
Mr. and Mrs. Michael J. Fasulo
Mr. and Mrs. Raymond J. Galladay
Mr. and Mrs. Charles E. Harrison
Ms. Annette C. Julies and Ms.
Florence G. Zambell
Mr. and Mrs. Dan Justice
Ms. Rebecca M. Kipilla
Mr. Joseph Malley
Mr. and Mrs. Raymond J.
McDonough
Ms. Joan M. Michaelson
Dr. and Mrs. Robert W. Miller
Mr. and Mrs. Charles E. Monahan
Ms. Sylvia Musto
Ms. Ida Nigro
Orthopedic Gift Fund
Mr. and Mrs. Thomas W. Ozgo
Mr. and Ms. Don Paradiso
Mr. and Mrs. James E. Pettigrew
Mr. and Mrs. Stephen H. Reitberge
Ms. Kristen L. Shogren
Mr. and Mrs. Carmelo Spoleti
Mr. James J. Tutak
Mr. and Mrs. James J. Walinger
Mr. and Mrs. Vincent A.
Winkleblec
Mr. and Mrs. Michael F.
Wyzykowsk
Mr. and Mrs. Albert Zarbetski
Greg Wallis
Amica Companies Foundation
Mr. Roger V. Anderson
Mr. and Mrs. Mark J. Bahr
Mr. Michael P. Bahr
Mr. and Mrs. James C. Baragar
Mr. and Mrs. Salvador Casas
Ms. Priscilla S. Caskin
Mr. and Mrs. Scott M. Crenshaw
Ms. Susan A. Evon
Ms. Kristi L. Gay
Ms. Carol Ann Gilmore
Mr. and Mrs. Terrence W.
Krogstad
Mr. and Mrs. Willard H. Leavitt
Ms. Stephanie J. Mcgovern
Ms. Suze Mitchell
Ms. S Baird Morgan
A Child Hero: Reilly Sheffield
by Slater Jewell Kemker
R
eilly Sheffield and I have
been friends since we first
met during kindergarten in
Los Angeles, California. Looking at
the smart, blonde-haired 13-yearold with fierce pale blue eyes and a
wonderful sense of humor, you would
never think for a moment that he
had a life-threatening disease called
tuberous sclerosis complex (TSC).
TSC has symptoms like epilepsy,
autism and tumors.
Reilly is really smart, funny, and
generous, has a great imagination, is
brave and kind, and is a loyal friend.
When I asked him who inspired him,
who his hero was, he said that his
parents were his heroes. When I asked
him why, he said “because they love
me, and because it helps to use their
lives as a comparison.”
“And also my adult friend Rich,”
Reilly continued. “He is really nice
and always makes me laugh. Plus he
has been in the hospital like I have.
So it’s nice to have someone to talk
to about hospitals…depression…and
that kind of stuff. My parents just
need to love me to be my inspiration.
Really that’s all I need right now.
Love… and antidepressants,” he adds
with his dark sense of humor.
Reilly just had a kidney transplant
and the medication he is on has a side
effect of depression. But I don’t, and
Reilly doesn’t want you to feel sorry
for him. He’s a strong kid.
I can see why Reilly’s heroes are his
parents. Chris and Pat Sheffield have
worked very hard to raise millions
of dollars to find a cure for TSC.
They also are kind, funny and treat
Reilly like a regular kid so everyone
else does too. We spent many happy
times at the Sheffield house, creating skits with stuff from the massive
box of dress-up items, swimming in
their pool and biking down at the
park with his little sister Parker. Chris
would even get Reilly and me out of
school for a ‘secret’ lunch of French
fries. It’s good to have a PTA mom
on your side when
you’re skipping out of
the school cafeteria. I
guess what I am trying to say is that
his parents are always there for him.
Some of his hobbies are swimming, playing with friends, playing
video games and reading and playing
with his dog, Judy. When Reilly grows
up he wants to be “an architect…. or
a dad. Maybe both.”
Reilly Sheffield is my hero because
he has embraced life with open arms.
And because, throughout everything,
he remains positive. He doesn’t let
TSC envelop him like a cloak, but
stamps it down into the dust with his
foot. He makes me grateful for the
little things. He makes me appreciate
who I am. As a human being. I asked
him if he wanted to share anything
else and he told me: “Be yourself and
don’t let anything change you, unless
you want to.”
Reprinted with permission from MyHero.com.
Holiday Stamp Out TSC and
Gift Wrap Campaign Update
T
his past holiday
season’s Stamp
O ut T S C a nd
Gift Wrap fundraising
c a mpa igns were once
again huge successes, thanks to the
many dedicated participants who
donated their energy and time.
For Stamp Out TSC, registered
participants sent letters and cards to
their families and friends asking for
a donation to the TS Alliance. This
year it raised more than $30,000
– the most in a single year. Since
its inception four
years ago, the Holiday
Stamp Out TSC has
earned $70,000 for
TS Alliance support
programs and research efforts. A
special thank you to our top fundraiser this holiday season, Howard
Brewer, who received more than
50 donations from individuals and
organizations in honor of his son,
Anthony Brewer.
The Gift-Wrap sales program,
operated in conjunction with Sally
Foster, also earned more than
$30,000 this year. A special thank
you and congratulations to our
top fundraiser this season, Renee
Mueller, who sold gift wrap to more
than 30 individuals in her local
community.
Remember, the Stamp Out
TSC campaign continues this May
to help highlight TSC Awareness
Month. For more information on the
Stamp Out TSC program, contact
us at (800) 225-6872 or via email at
[email protected].
Promoting Positive Sibling
Interactions and Relationships
“It’s always about him!”
“She ruins everything!”
“Why doesn’t he have
to clean his room?”
I
f you are a parent of a child with
a serious disease, particularly
if the disease is complicated
with challenging behaviors and/or
developmental delays, it is quite possible
that the siblings of the affected child
have, at one time or another, made
statements similar to the ones above.
Parents of children with tuberous
sclerosis complex (TSC) often find
themselves attempting to balance the
unpredictable medical situations with
the social and emotional needs of all
family members.
TSC is a family disease. Regardless
of whether individual family members
are impacted physically, the entire
family dynamic often surrounds
supporting the affected child. For
siblings, this can create conflicting
feelings vacillating between love and
affection to resentment and anger
toward their brother or sister. For
parents, feelings of guilt about not
having the equal time or resources to
spend with all of their children due
to the needs of one can seem overwhelming and lead to self-doubt in
their parenting roles.
However, family members can
work together to develop strategies that help foster understanding
between siblings, encourage positive
interaction between everyone and
alleviate some of the fear living with
TSC can cause.
1. Sibling Rivalry. It is important for parents to remember that
levels of sibling rivalry are present in
most all sibling relationships – with
17 S P R I N G 2 0 0 7
or without one sibling having a
disability or disease. Brothers and
sisters often create a child’s first social
system. They learn from each other
through play and daily interaction.
However, for a child living with
TSC, the play and interactions may
not be of a typical nature. However,
siblings, with the encouragement
from parents and other adults, will
create their own dynamic. Often the
qualities associated with birth order
can reverse when the eldest child has a
disability and a younger sibling takes
on the roles of protector and leader.
It is appropriate to allow children to
figure out these roles and encourage
them to work through the minor
issues that occur through the normal
occurrences of play. As a parent, it is
critical to monitor the sibling relationships to make sure all children
are safe and respected. In general,
however, allowing children to work
through their differences and set their
own boundaries, as all siblings learn
to do, will help encourage a child’s
overall development.
2. Education. Age-appropriate
education of siblings of children with
TSC is critical. However, due to the
unpredictable and often scary nature
of TSC, it is important to not create
a fearful environment. For example,
parents who witness a child’s seizure
often describe the experience as
“surreal” and “terror-filled.” A sibling
who sees a brother or sister having a
seizure also experiences the same feelings – though depending on age and
stage of development, may not be
able to verbalize them. Parents need
to encourage discussions about what
a seizure is, how seeing their sibling
have one made them feel and offer
the siblings reassurance. At the same
time, it is critical to assess a sibling’s
ability to comprehend and offer
information appropriate to not only
their age, but also to developmental
and maturity levels.
3. Encouraging Outside Interests.
When a child with TSC has a developmental delay, often the gap created
by that delay increases. Regardless
of the varying abilities of each child,
one of the most important jobs of
a parent is to prepare all children to
be as independent as possible. When
the interests of siblings change, it
is important for parents to encourage friendships with classmates and
neighbors and help the child identify things important to him or her.
Sometimes, siblings of children with
disabilities feel unable to express their
own desires and interests and struggle
with their identities beyond being
the brother or sister. This feeling of
responsibility can actually turn into
resentment toward their disabled
sibling. In turn, the disabled child
needs to be encouraged to form
relationships outside of siblings.
While this can be challenging for
both parents and child, there are
often opportunities such as inclusive
community-based activities that
encourage children with and without
disabilities to socialize. For example,
recreational center special-needs
sports and Special Olympics allow
children and parents to meet others
that share similar experiences.
4. Outside Support. Creating
parent and child one-on-one time is
a strategy most families try to implement. Unfortunately, the unpredictable nature of TSC often makes
planning ahead difficult and disappointments great when events need
to be canceled. Developing a family
back-up plan can help alleviate those
disappointments. One suggestion is to
partner with another family of a child
with a disability. Get to know each
other’s children and their particular
disease manifestations, personalities
and habits and create a respite support
system with each other. This will
allow parents to feel comfortable with
another family taking care of their
child and the child to feel comfortable
with them. If a family can identify
partners early on, be sure to keep them
always involved in the child’s medical
status, medications and needs. If a lastminute need for support should arise,
there is already someone available to
help. Additional resources include Big
Brothers/Big Sisters, Best Buddies and
community service providers.
5. Leveraging Resources. The
reality for many families managing
a chronic disease and/or disability is there often seems to be not
“enough” money to do everything
– co-payments, medical bills, lost time
from work and extra therapies eat away
at even the healthiest of savings. When
you add these additional costs to the
already unpredictable issues all families
experience, such as household and car
maintenance, the thought of spending money on vacations, activities and
entertainment can feel frivolous and
often is just not possible. However,
though they may seem unnecessary,
having the opportunity to enjoy life
as a family, participate in hobbies and
partake in new experiences are critical
in maintaining a balance and reducing
stress. Many times, community and
civic organizations and local recreation councils offer reduced-fee or
scholarships for families and children
to participate in activities. YMCAs
offer sliding-scale fees and sponsorship
opportunities. Applying for this type
of support should not feel stigmatizing, nor should any family be made
to feel uncomfortable moving forward
with their request. Money is set aside
within these organizations for the
purpose of offering recreational and
social experiences for as many children
as possible.
However, resources do not just
relate to finances. There are times
when cost is not as much of a consideration as are logistics – how can
my son participate in karate when
my daughter needs to be at occupational therapy (OT)? The first
thing to realize is whether a family
has a disabled child or not, it is not
possible to be in two places at once.
Mastering a schedule as a parent is
critical. Accepting that because one
or both children may require onsite supervision, times arise when
doing everything is just not possible.
However, when the schedule dictates
that the only karate class is at 4:10
pm and the only OT appointment is
4:15 pm across town, families need
to become creative. A natural “circle
of support” is comprised of friends,
neighbors and community/church
members – those people who come
up to you regularly and say, “Let me
know what I can do to help you.”
People most often genuinely want to
help. They would love to be asked
to do a specific task. Parents cannot
wait for someone to offer – they may
not know help is even needed. When
possible, it is important for parents to
allow another person to accompany
the child with a disability to the
activity and the parent to attend the
sibling activity. Often a child with
a disability will have long-term OT
needs; however, the opportunity to
see your typical child earn the next
belt level in karate doesn’t come
across as frequently.
Friends, neighbors and acquaintances can often offer the greatest
resource. Get to know them well,
develop trust, teach them about your
family and TSC and take a mutual
interest in their lives. By extending relationships outside the nuclear family,
greater opportunity exists for support
when an unexpected issue arises.
5. Alleviate Guilt. Remember
– not all members of the family are
created equal. Parents make the rules
and make the hard decisions and,
regardless of disability, children will
not always be happy. In all families,
siblings have responsibilities to each
other and their parents. In a family
with a disabled child, the reality
is there may be more demands on
siblings and more confusion about
roles and responsibilities. As siblings
get older, it is important to make
sure clear guidelines and expectations
are set. It is also critical that rules,
responsibilities and consequences
exist for the disabled child with the
disability as appropriate to his or her
cognitive level.
6. It’s Not All About TSC. As a
parent to a child with TSC, his or her
needs may be, by necessity, the major
focus of each day. It is important that
siblings go at their own pace in learning about TSC, their participation in
fundraising events and their interest
in the daily details of disease management. Parents should remember that
although TSC has control over many
aspects of the family, it does not
define the family. A family’s dynamic
is determined by the values it deems
important. Being a family affected by
a disease or disability often enhances
love, respect, tolerance and acceptance.
7. Supporting the Non-Disabled
Child. Frequently non-disabled children have difficulty discussing feelings related to the disabled sibling.
No matter how often they were
guided and taught, logically, that
their brother or sister is “different,”
“special” or “sick,” those concepts are
difficult to always remember. Here
are some tips:
•It is crucial for parents to keep the
lines of communication open – ask
specifically, “How did it make you
feel when your brother started to get
overwhelmed at the mall today?” The
non-disabled child surely felt the same
as the parent did – irritated, maybe
angry, embarrassed and frustrated. By
validating his or her feelings and agreeing, that while you love the child, it is
also hard being the parent.
•Learn to recognize behaviors such
as temper tantrums or other attention-seeking methods and discuss
them as soon as possible. Often children do not have the words to express
their anger and frustrations, and they
may feel guilty because while they
logically understand that their sibling
cannot control some behaviors or
medical situations – it does not mean
it is easy to accept the situation.
•Get outside help if necessary
– some mental health organizations
and disability advocacy organization
offer sessions specifically for siblings
of disabled children.
•When possible, try to limit the
TSC talk, appointment scheduling,
insurance company arguing and
other time-consuming tasks related
to disease management to times
when children are not present. While
this may be one of the most difficult recommendations as a parent is
often at the mercy of the provider,
it’s important for children to feel
their parents are present in their
lives instead of pre-occupied all the
time. This suggestion will make
for a more productive conversation
with the provider and not interrupt
valuable time with children. While
making breakfast, reviewing a child’s
homework from the night before and
talking to the insurance company
about a denial letter may seem like
the ultimate in multi-tasking to a
parent, but to a child it seems like
disinterest.
•Talk in positive terms of the
family. Let personal family values
dictate beliefs and what is important
in life. Remind the child that all families face different situations and that
if they did not have a disabled brother
or sister, life would not necessarily
be better – though acknowledging it
would be different. In each family,
roles are assumed, rivalries occur,
interests vary and parents are preoccupied. Do not allow the disabled
child to become the scapegoat for all
family circumstances.
You Can Do It
It is often said that being a parent
is the hardest job in the world. Many
would argue that being the parent
of a disabled child is even harder.
However, being a sibling is also difficult – being a sibling to a disabled
brother or sister adds additional
layers of challenges. It is important to
remember that all families are families
first, acknowledging the stressors all
members experience related to being
affected by a disabling disease and
accept that despite this the goal, it is
critical to keep the family supportive,
loving and strong. By focusing on this
goal many families facing disabilities
find they are more supportive of each
other, more loving toward each other
and stronger in the face of all things
challenging.
TSC Natural History Database Project Update
T
he TSC Natura l Histor y
Database (TSCDB) Project
will complete its six-month
pilot phase in April 2007. The Clinic
Without Walls at the Minnesota
Epilepsy Group® (Michael D. Frost,
M.D.) and the TSC Clinic at the
Texas Scottish R ite Hospital for
Children ( Steven P. Spa raga na,
M.D.) were selected by the TSCDB
Steering Committee to enroll 40 or
more individuals with TSC at their
respective clinics. During the pilot
phase, both clinics will report any
database user function problems
and suggest possible programming
to be considered before launching
Phase 2 of the project, when six more
TSC clinics will begin enrolling
participants in June 2007.
19 S P R I N G 2 0 0 7
At the time this issue of Perspective
went to print, the two pilot sites
collectively have enrolled 75 individuals with TSC for the project. Each
TSC clinic is entering their medical
information including diagnoses,
tests, treatments, symptoms, gene
type (TSC1 or TSC2) and family
history into the database and will
continue to collect new information
throughout their lifetimes.
Lori Matasovsky and two of her
adult-aged children have TSC. Lori
says they have been going to the
Minnesota Epilepsy Group® for
more than a decade. When asked why
she agreed to participate in the TSC
Natural History Database Project
through The Clinic Without Walls,
she expressed a need for increased
awareness about TSC not only in the
workplace but also among families.
She cited her own experience of being
diagnosed with epilepsy as a child
but not learning that she also had
TSC until she was in her early 40s.
Lori hopes information about herself
and her children will in some way
help others with TSC in the future,
“so they don’t have to go through so
many years of being misdiagnosed,
or not knowing that they have this
genetic disorder.”
Check the TS Alliance website at
www.tsalliance.org for any new information about the database project.
Announcements will also be posted
as each of the next TSC clinics gains
approval to begin enrolling participants.
Adult Network Update
I
know I missed the column the
last issue. I was dealing with more
weighty medical problems again,
such as my second embolization (the
first was in 2003). I had about six
angiomyolipomas this round that
were between 6-8 cm, so it was time
to do something about them. In this
column, I want to expound on a few
important items addressed in the last
issue of Perspective. Because of all the
medical issues I’ve had in the last few
years there are a few things that have
taken on greater importance to me as
the years go by. One is participation
in clinical trials, and the other is
government advocacy.
A few yea rs a go, I wrote a n
article for Perspective about my first
National Institutes of Health (NIH)
experience. The article focused how
empowering and important that visit
was, even though it revealed I had
Lymphangioleiomyomatosis (LAM).
That visit still empowers me, even
though I have not had as many visits
as I’d like due to all my health issues
in the past few years. Every time I go
to NIH, I learn something new to help
myself better understand and cope
with my TSC and LAM. I also feel
secure that if my pulmonologist and
nephrologist are finding similar things
when they examine me, everyone is on
the same page and I am getting the
best care possible.
Now, not only through the NIH,
but also through the TS Alliance,
drug trials are possible for medications
that may hold possibilities in helping
us live and cope better with these
diseases. Participation in trials, even
if they are not treatment-based, can be
fatiguing and sometimes inconvenient,
but they yield a bounty of information
– important information for you
and for everyone who treats you to
function as a team and obtain the best
care possible.
I say this because I urge people to
educate themselves, and if they are a
good fit, to participate in clinical trials.
You are not only helping yourself, but
others and researchers who need to
better understand the course of TSC
and for those of us who have it, LAM.
Ho w d o e s t h i s t i e i n w it h
government advocacy? Well, some TSC
research is funded with government
dollars. So is NIH. Every year I visit
with my congressional representatives
(as many as I can squeeze in) to talk
about my TSC, the importance of
NIH and TSC research, and how it
has all saved my life.
Quite honestly, the lung collapse
I experienced this past March was lifethreatening. Had I not known from
the NIH, the TS Alliance and LAM
Foundation what a lung collapse was
and what to look for I might not be
here today. Having experienced lung
collapses before, I was better equipped
to cope and deal with it in the best
manner possible and to know that
something was greatly amiss with this
last one because of its symptoms. It
was a tension pneumothorax and time
was of the essence.
Had I not had the screening at
NIH and not been pointed there by
friends from the TS Alliance, I might
have struggled alone for several years
feeling lost and hopeless as to what to
do and who to see. Because my doctors
keep very close tabs on my health,
most issues, even ones as concerning
as kidney tumors, are mostly nipped
in the bud before they become a real
problem. This too is a lifesaver.
So my friends, I am not trying to
be grim and depressing, but to stress
the importance of these services.
We need to protect and utilize them.
I used to think it very daunting
t o a ppr o a c h my c on g r e s s i on a l
representatives, but it is very easy. The
TS Alliance government advocacy
training really makes it simple to
do. Congressional representatives
actually do appreciate hearing from
their constituents, and most are very
supportive and understanding and
usually help fight to protect NIH
funding and the Congressionally
Directed Medical Research program.
Meet ing w it h t hem is not a s
intimidating as it sounds. I was very
nervous for my first appointment, but
was just honest and upfront about why
I was there and what I needed from
my congressional representative. At the
second appointment I was much more
poised and at ease.
This information is timely, because
the next Adult Summit is scheduled
for April 22-23, with time set aside to
contact your representatives. The TS
Alliance’s annual “March on the Hill,”
taking place in March, also offers a
prime opportunity. But even if you
just email or call on your own when
convenient, our issues regarding TSC
research funding are vitally important.
It is essential that representatives hear
from multiple people – the more
they hear from, the more pressure
and incentives exist for them to help.
However, it has been in my experience
with Senator Johnson’s office in South
Dakota (my childhood state), one
voice does make a difference so take
the initiative to reach out.
Finally, the Adult Network is
thinking about creating a hospitality
group for those who attend the NIH
for TSC/LAM treatments – maybe
we all go out to dinner, meet with
the Metro DC Community Alliance,
engage in a group activity or just
sit and talk to one another? This
approach could offer a bright spot and
a break from all the NIH testing and
activities as well as a chance to make
new friends. Please email me to let me
know what you think.
As always if you have questions
or concerns, feel free to email me or
another member of my committee.
We are always here to listen.
Best,
Nikki
[email protected]
TSC Clinics
To schedule an appointment, contact
Kathleen Pawlik, M.S.N., R.N., C.P.N.P. at
313-745-5788.
Children’s Hospital at Vanderbilt
For more information or to schedule an
appointment call:(615) 936-5536.
St. Paul
Dallas
The TSC Clinic Without Walls, A Branch
of Minnesota Epilepsy Group, PA® of
United Hospital and Children’s Hospitals
and Clinics Minnesota
For appointments, call Carol Hoskins,
R.N. (Pediatric) at (651) 241-5290;
Cathy Folland, R.N. (Adults) at (651)
241-5290; or Elizabeth Siqveland, R.N.
(Neurocutaneous Clinic at Children’s
Clinics-St. Paul) at (651) 220-6745.
Texas Scottish Rite Hospital for Children
For appointments contact either Lisa
Tran, R.N. at (214) 559-7549 or
Catherine Thompson at (214) 559-7818.
Email: [email protected]
Loma Linda
The TSC Clinic at Loma Linda University
Medical Center and Children’s Hospital
To make an appointment, contact Melinda
Richardson, R.N. at (909) 835-1810.
Los Angeles
TSC Clinic at UCLA
Angela Perez at (310) 206-4037.
Oakland
The Jack and Julia Center for Tuberous
Sclerosis Complex at Children’s Hospital and
Research Center at Oakland
To schedule an appointment, contact Leslie
Angeles at (510) 428-3885 ext. 4543.
St. Louis
St. Louis Children’s Hospital Division of
Pediatric Neurology
For appointments, call Terri DeVault at
(314) 454-4089.
Hartford
Neurogenetics Clinic at Connecticut
Children’s Medical Center
To schedule an appointment, call
(860) 545-9460.
New York City
The Tuberous Sclerosis Center at New York
University Medical Center
To schedule an appointment, call Maria
Jimenez at 212-263-8378.
Fairfax, Virginia
Children’s Regional Outpatient Center
For information on the clinic or to
schedule an appointment, contact Nancy J.
Elling, RN, BSN, CPN at (571) 226-8343.
Miami
Miami Children’s Hospital
Patricia Dean, ARNP, MSN or Jessica
Cardelle at (305) 662-8342.
Children’s Hospital Medical Center
Tuberous Sclerosis Clinic
To schedule an appointment or for
information, contact Melody Gulleman at
(513) 636-4222. Email: [email protected]
Cleveland
University of Chicago
To schedule an appointment contact
Sharon at (773) 834-8064.
Boston
Philadelphia
The Carol & James Herscot Center
for Children and Adults with TSC at
Massachusetts General Hospital
Zaida Ortega at (617) 726-0241.
University of Pennsylvania Medical Center
Co-Directors: Peter Crino, M.D., Ph.D.
and Katherine Nathanson, M.D.
Margo Aragon at (215) 349-5312.
Multi-Disciplinary Tuberous Sclerosis
Program at Children’s Hospital Boston
To schedule an appointment with Mustafa
Sahin, M.D., Ph.D. in Pediatric Neurology,
call Jody Heffernan at (617) 355-2711.
Pittsburgh
Detroit
Nashville
Children’s Hospital Michigan
The TSC Clinic at Monroe Carell, Jr.
21 S P R I N G 2 0 0 7
The TSC Clinic at Memorial HermannTexas Medical Center University of Texas
Medical School at Houston
To find out more about the clinic
or to schedule an appointment, call
Gayla Roberson, RNC, TSC Clinical
Coordinator at (713) 500-7032, Office
Hours Mon-Wed 9 a.m.-5 p.m.
NEW TSC CLINICS
OPEN IN THE ROCKY
MOUNTAIN AND
SOUTHERN REGIONS
Denver, Colorado
Cincinnati
TSC Care at CCF (The Cleveland Clinic
Foundation)
For more information or to schedule an
appointment, call toll-free,
1-800-CCF-CARE ext. 5TSC6
(1-800-223-2273 ext. 58726), or
e-mail [email protected]
Chicago
Houston
Children’s Hospital of Pittsburgh
To schedule an appointment,
contact Carol A. Smith, C.R.N.P. at (412)
692-7569.
Paul Levisohn, M.D. has started a Tuberous
Sclerosis Complex (TSC) Clinic at The
Children’s Hospital in Denver. The Children’s
Hospital TSC Clinic meets once a month for
children with TSC and offers services from the
following specialties: dermatology, genetics,
neurolog y, nephrolog y, neuropsycholog y,
and ophthalmology. For more information
or to schedule an appointment, call Dee
Daniels, P.N.P., at (303) 861-6895.
Birmingham, Alabama
E. Martina Bebin, M.D., M.P.A. and Bruce
Korf, M.D. started a TSC Clinic at the
University of Alabama Birmingham (UAB).
Beginning April 2, The UAB Tuberous
Sclerosis Complex Clinic will meet the second
Tuesday of every month to care for children
and adults with TSC. The clinic is located
on the first f loor of the UAB Hugh Caul
Genetics Building. The following specialists
attend the clinic: Dr. Bebin (neurolog y,
epilepsy), Dr. Korf (neurology, genetics), Dr.
Theos (dermatology), and Christina Barger
(genetic counselor). Additional subspecialty
consultation is available as needed in
endocrinology, nephrology, neurosurgery,
ophthalmology, and pulmonology. For an
appointment, call Vicki Garmon in the
UAB Department of Genetics toll-free at
(888) 822-4362 or (205) 934-5567.
Volunteer Outreach Program
Join a Community Alliance Near You
N
ow in 30 regions across
the country, Community
A lliances (volunteer
branches of the Tuberous Sclerosis
Alliance) host educational meetings
and support groups, work together to
increase awareness of our cause and
organize incredible special events.
Becoming part of a Communit y
A l l i a nc e prov ide s a wonder f u l
oppor tunit y for you to connect
with other individuals living with
tuberous sclerosis complex, parents,
grandparents, relatives and health
ca re professiona ls in your loca l
area. In just the past f ive years,
volu nte er s h ave or g a n i z e d a nd
continue to lead these 30 branches
of our organization. Whether you
would like to help in delivering
updated packets of information to
local health care professionals, want
to form a walkathon team for a local
Step Forward to Cure TSC or are
interested in taking a more active
leadership role, we encourage you to
contact the chair of your Community
Alliance.
We are also thrilled that several
new Community Alliances are being
formed to help us reach even more
individuals and families. Kick-off
meetings taking place this winter and
spring include Baton Rouge (LA),
Birmingham (AL), Corpus Christi
(TX), Mobile (Alabama Gulf Coast),
and Sacramento (CA). If you are
unable to attend a kick-off meeting
but are interested in getting involved
locally or for more information on
how you can start a Community
Alliance in your area, let us know by
calling (800) 225-6872.
To find out more about activities
taking place in your local area, visit
the websites listed below or contact
the Tuberous Sclerosis Alliance.
TS Alliance
Community
Alliances
TS Alliance of the
Heartland – Iowa
www.tsallianceheartland.org
Susan Ballantyne, Chair
Cindy Blackard, Vice Chair
TS Alliance of Arizona
www.tsalliancearizona.org
Debora Moritz, Chair
TS Alliance of Houston
www.tsalliancehouston.org
Lucy Martinez, Chair
TS Alliance of Atlanta/
North Georgia
TS Alliance of Indiana
www.tsalliancegeorgia.org
Reiko Donato, Chair
Dee Triemer, Vice Chair
www.tsallianceindiana.org
Christine Davis, Chair
Roma Hinton, Vice Chair
TS Alliance of the Carolinas
TS Alliance of
Intermountain West - Utah,
North Carolina and South Carolina
www.tsalliancecarolinas.org
Catherine Warman, Chair
Amy Quintana, Vice Chair
Idaho, Nevada and Montana
www.tsallianceinterwest.org
Julie Fleming, Chair
Valarie Rhead, Vice Chair
TS Alliance of Connecticut
www.tsallianceconnecticut.org
Jennifer Waldron, Chair
TS Alliance of Kansas City
TS Alliance of the Dallas/
Ft. Worth Area
www.tsalliancekansascity.org
Lisa Hart and Laura Kozisek,
Co-Chairs
Amy Dublinske, Vice Chair
www.tsallianceDFW.org
Tricia Bodnar and Maria Cole, Co-Chairs
TS Alliance of Metro DC
TS Alliance of the
Delaware/Lehigh Valley
- Southeast Pennylvania, Northern
Delaware and Southern New Jersey
www.tsalliancedelehigh.org
Shelly McFadden, Cindy Richards
and Liz Saadoun, Co-Chairs
www.tsalliancemetrodc.org
Julie Blum, Chair
TS Alliance of Michigan
www.tsalliancemichigan.org
Treasa Bolger, Chair
Matt Bolger, Vice Chair
TS Alliance of Florida
TS Alliance of Middle
Tennessee
www.tsallianceflorida.org
Barbara Alvarez and Debora Yohn,
Co-Chairs
www.tsalliancemedtenn.org
Elizabeth Hauler and Mark Martin,
Co-Chairs
TS Alliance of
Greater Chicago
TS Alliance of New
England- Maine, Massachusetts,
www.tsalliancechicago.org
Lisa and Jay Smiley, Co-Chairs
New Hampshire, Rhode Island and
Vermont.
www.tsalliancenewengland.org
Karin Sullivan, Chair
Jeff Hargreaves, Vice Chair
TS Alliance of New Jersey
www.tsalliancenewjersey.org
Sherrie and Dennis Busel, Co-Chairs
Discussion Groups)
Maureen Reyes, Chair
April Cooper and Christy Hobart,
Co-Chairs
TS Alliance of the Pacific
Northwest – Washington State
TS Alliance of the Upper
Midwest
www.tsalliancepacificnw.org
Susan Jorski, Chair
Courtney Peters, Vice Chair
Minnesota, North Dakota, South
Dakota and Western Wisconsin
www.tsallianceuppermidwest.org
Jim Hable, Chair
Missy Anderson, Vice Chair
TS Alliance of the New York
Metro Area
www.tsalliancenymetro.org
Peggy and Tommy Lindsey, Co-Chairs
Francine Ostrow, Co-Chair
TS Alliance of Northern
California
TS Alliance of the Rocky
Mountain Region- Colorado,
New Mexico and Wyoming
www.tsalliancerockymtn.org
Dana Holinka, Chair
Catherine Warman, Vice Chair
www.tsalliancencalifornia.org
Shannon Hackley-Leal, Chair
TS Alliance of St. Louis and
Southern IL
TS Alliance of Ohio
www.tsalliancestlouis.org
Rene Friedel and Dave Henke, CoChairs
www.tsallianceohio.org
Jim and Nancy Weir, Co-Chairs
TS Alliance of Virginia
www.tsalliancevirginia.org
Linda Wolters, Chair
TS Alliance of Western
Pennsylvania
www.tsalliancewestpa.org
LuAnn Keppel and Mike Seaman,
Co-Chairs
TS Alliance of Wisconsin
TS Online Community Alliance
TS Alliance of Southern
California
www.tsalliance.org (click “Online
www.tsalliancescalifornia.org
www.tsalliancewisconsin.org
Kristin Champagne, Vice Chair
Community Alliances Partner with
Visiting Experts
I
n 2005, the Tuberous Sclerosis
A lliance in cooperation with
Community Alliances nationwide
created the “Meet the Expert” series
as part of our educational outreach
ef forts. These semina rs pa rtner
TS Alliance Professional Advisory
Board members, TSC clinic directors
and TS Alliance researchers with
local communities as they travel for
professional conferences or are invited
to speak to Community Alliances.
It provides a unique opportunity to
hear from TSC “experts” from out
of town who donate time to share
their expertise. In the first year of the
program, seven “Meet the Expert”
seminars took place.
23 S P R I N G 2 0 0 7
The TS Alliance extends its deepest
appreciation to the following experts
for donating their time and talent in
the fall of 2006:
•John Bissler, M.D. traveled to
Houston, Dallas and St. Paul (MN)
to meet with members of the local
community and give a talk on Renal
Manifestations and Treatment Options.
•Mark Mausner, M.D. traveled
to Atlanta, meeting with local healthcare professionals as well as community members to talk about Skin
Manifestations and Treatment Options.
•Mustafa Sahin, M.D., visited with
families in Albany (NY) and Pittsburgh
discussing Seizure Types, Treatments
and updates on his research.
•Orrin Devinsky, M.D., Kevin
Ess, M.D., Ph.D., Michael Frost,
M.D. , Susan Koh, M.D. , Steven
Sparagana, M.D. , Elizabeth Thiele,
M.D., Ph.D., and Ajay Gupta,
M.D., F.A.A.P., met with Southern
California families in early December
while in town for the American
Epilepsy Society meeting. Dr. Thiele
presented an update on TSC research
and then the panel answered questions from attendees.
I n 20 07, “Me et t he E x per t”
seminars are planned for Dallas,
Washington D.C., Philadelphia,
Boston and Southern California.
Look for a meeting announcement
near you.
STAMP OUT TUBEROUS
SCLEROSIS by participating in a
NATIONAL LETTER-WRITING CAMPAIGN.
Letter-writing campaigns are a fun and easy way
to help raise needed funds and build awareness for
tuberous sclerosis. We Need Your Help!
It is not too early to request your STAMP OUT
Tuberous Sclerosis guide. Simply call 1-800-225-6872
to get started today!
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Visit the
TS Alliance Online Store
today at www.tsalliance.org!
Non-Profit Org.
U.S. Postage
PAID
Capital Hts, MD
Permit No. 6041

PDF File - Tuberous Sclerosis Alliance

Transcription

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