NODCC Newsletter August 2007 - National Organization of

NODCC NEWS
PMB 363 18032-C Lemon Drive
Yorba Linda, CA 92886
A Publication of the National Organization for Disorders of the Corpus Callosum
IN THIS ISSUE
New ACC and Me Children’s Book Launches
at DCC Conference with Special Guest
Research Highlights
Notes from the conference research
presentation
Dallas Cowboys Wide
Receiver Jamaica
Rector reads ACC and
Me to the conference
attendees on the
opening night of the
2007 DCC Conference.
Page 2
Conference Wrap Up
Recap of attendance and
conference fundraising
Page 2
NODCC Board of Directors & Staff
Officers
President: Matt Levi
Treasurer: Karen Dineen
Secretary: Megan Mutti
Board Members
Kristen Barge
Warren Brown PhD
Ross Clary
Dan Daly PhD
Ann Eisenberg
Paul Guilbault MD
Guy Harrison
Richard Howell
Jennifer Little
Paul Moes PhD
Allison Richards
Elliott Sherr MD PhD
Dave Shirk
Lynn Snyder PhD
Doris Webb
NODCC News • FALL 2007
Committees and Task Forces
Communications Committee
Chair: Jennifer Little
Development Committee
Chair: Doris Webb
Education Initiative Task Force
Chair: Megan Mutti
Nominating Committee
Chair: Matt Levi
Scientifc Advisory Board
Chair: Elliott Sherr MD PhD
Website Task Force
Chair: Dan Daly PhD
BUSINESS REWARDS
Please use the business reward
numbers to benefit the NODCC
when visiting the following retail
outlets:
STAPLES #3397024724
OFFICE MAX #1348-26266
PAMPERED CHEF FUNDRAISER
**Buy Pampered Chef products
online September 15 - October 30
and NODCC will receive 10% off all
orders. For details see www.nodcc.
org.
Education Task Force
Education Survey Launches
Page 2
Conference Feature
ACC Parent Shares Perspective from
Conference
Page 3
UPCOMING
EVENTS
July 18-20, 2008
Disorders of the Corpus
Callosum Conference 2008
Cherry Hill, NJ
PMB 363 18032-C Lemon Drive
Yorba Linda, CA 92886 USA [email protected] | www.nodcc.org
p: 714.747.0063 | f: 714.693.0808
A new children’s book titled, ACC and Me,
was completed this summer to promote
positive awareness of disorders of the corpos callosum.
This book was a collaboration between
Dr. Kathy Schilmoeller of the ACC Network
and Dr. Lynn Paul, founding member of
the NODCC. Cindy Reisenauer, mother of a
son with agenesis of the corpus callosum,
illustrated the book. A grant from Pizza Hut,
Inc., helped fund the printing.
Dallas Cowboys wide receiver Jamaica
Rector joined attendees at the DCC Conference in July to help launch the book in a
Texas-size way. Rector read ACC and Me
aloud to children at the opening of the
conference and answered questions about
being a football player.
Information can be a crucial source of empowerment and comfort, especially when
the information is about yourself or someone you love. Children with disabilities are
often embarrassed in school and with their
family because they cannot do something
that their peers can do. Tragically, if the disability is not diagnosed or if children are not
educated about their problem, they may
struggle with intense feelings of shame and
may believe that they are defective.
The three most important ways to treat
children with disabilities are to:
1. Educate about the diagnosis
2. Empower children to respect
themselves
3. Generate effective ways of addressing
the disability.
Many of these children have difficulty
learning to read, and they may struggle
with other academic and motor activities. Such difficulties are embarrassing for
children, and many of them find it a relief
to know that there is a real reason why they
struggle.
This is the first book about a disorder of
the corpus callosum, most likely because
this condition must be diagnosed through
brain scans (MRI) that have only become
common in the last 10 years. As the rate
of diagnoses increases, more children and
teachers are trying to understand the condition. This book helps fill that gap.
The overarching message throughout the
book is that having a disability can make
things more difficult, but that perseverance
pays off. It also shows that other people
will be more understanding when you educate them about a particular condition.
Additional copies of ACC and Me are
available by contacting the NODCC.
conference recap
Texas-Sized Fund Raising and Attendance
The 2007 DCC Conference
in Dallas was hot—and not
just because of the steamy
termperature outside!
The event brought in 339
attendees from the U.S.,
Canada and Great Britain.
There were 74 children and
teens—including 51 with
DCC—participating in the
supervised children’s program staffed by KiddieCorp.
There were also 16 adults
with DCC in attendance.
The silent auction raised
$4,447 with great items
donated by families and
corporations across the
country. This year we also
had a special live auction
item donated by an NODCC
family. The one-week stay in
a Colorado vacation home
raised an additional $2,900.
The local conference committee in Texas ensured a
successful event by raising
nearly $24,000 in advance of
the conference. These funds
are used to offset costs not
covered by registration fees.
Start making vacation
plans next summer as the
2008 Conference will be
held at the Crowne Plaza in
Cherry Hill, NJ—just outside
RESEARCH UPDATE
of Philadelphia. It’s a convenient location to visit Philadelphia, New Jersey and New
York with your family. Please
contact the NODCC if you are
interested in volunteering or
fundraising for next year.
,
Above: Sally Bober
MA, CC shares
information
on speech and
language issues.
Left: Elliott Sherr
MD, PhD presents
a session on “Getting the Most from
Your Neurological
Visit.”
EDUCATION Update
DCC Incidence Estimate
Education Survey Launch
The program at the
Conference this year began
with a brief update on DCC
research presented by Elliott
Sherr M.D., PhD (with assistance from Lynn Paul, PhD
and Warren Brown, PhD).
Here are highlights from the
presentation:
– It is estimated that at
least 1.5 million people
worldwide are affected by
disorders of the corpus callosum.
– While some genetic and
environmental causes are
known, most causes of DCC
are unknown.
– Currently, research collaborations are examining
genetics, neuroimaging, and
behavioral studies of DCC,
but there is much to learn.
– It is important for
Education services and
resources vary based on
school and district programs.
We hear this time and time
again from our families.
While this makes it difficult
to offer education solutions
across the board to our
membership, we are in a
position to share common
educational strategies and
techniques that can be used
to benefit our children with
DCC.
The NODCC Education
Initiative Task Force continues to gather information
on effective strategies for
elementary age children
with a callosal disorder.
The NODCC Family Survey
has been included with this
newsletter and can also be
downloaded on the website.
The goals of the survey
NODCC News • FALL 2007
families to advocate for
DCC research funding and
participate in studies.
– The NODCC Scientific
Advisory Board has several
long-range goals at this
time: promoting collaboration among current
researchers, hosting DCC
research conferences, and
providing seed monies to
encourage new researchers
to enter the field. To reach
these goals, parental support is crucial, both through
financial support and
through active participation
in raising awareness about
DCC.
If you are interested in
receiving the recent Nature Reviews Neuroscience
article about DCC, please
email lkpaul@mac. com.
are to better understand
academic performance of
children with DCC as well
as share techniques and
challenges with our membership.
The survey is designed for
parents of children ages 5 to
12. Questions focus on areas
of difficulty such as reading
or math, relationships with
teachers, therapy services
and academic progress.
Survey results will be
compiled (taking into account age and diagnosis)
and shared with the NODCC
membership and the general
public through our website
in the coming months.
All responses on the
survey form remain confidential. Please contact the
NODCC if you need additional information.
Our
Stories
Individuals born with a disorder
of the corpus callosum are
unique in many different ways,
but there are many similarities
as well. The NODCC receives
numerous inquiries with
requests for information on
people with disabilities and
challenges similar to those of
children and loved ones. Due to
privacy laws, the NODCC does
not share information on the
conditions of its members or
contact information without the
prior consent of a member. Our
Stories on the website will help
address this challenge.
Our Stories is as an electronic
book, which will eventually
contain hundreds of pages
of individuals’ and families’
personal stories about living
with a callosal disorder.
These anonymous stories are
categorized by condition,
gender and birth date to help
you find the stories most
applicable to your situation.
Members of the NODCC can
visit the Our Stories section
of the website to enter brief
information about the family
member living with a disorder
of the corpus callosum. The
information entered remains
anonymous and contains only
what you choose to post.
Viewing the submissions for Our
Stories is open to the public;
however, to regulate access,
you must be a member of the
NODCC to submit your story.
Please share your story today!
From the Heart of a Parent ...
The 2007 Conference in Dallas got
off to a great start with a big Texas
barbeque, visiting with old friends, and
making new acquaintances. There were
many families in attendance whose
children were newly diagnosed. It was a
joy to meet these families and encourage them on this journey. Just a quick
glance at the program gave the sense
that you were among friends and in the
right place to learn.
One of the highlights was the keynote speaker, Martha K. Downey. Mrs.
Downey holds a degree in social work
and is an author and speaker. She combines a sharp wit with her soft-spoken
demeanor to share her experiences raising her special needs daughter, Kate.
Mrs. Downey’s stories about Kate,
now age 25, sounded much like the stories shared by parents at the conference
all weekend. It was a heartwarming reminder that, even though the diagnosis
may not be exactly the same, families
with a special needs child have similar
trials and joys. We are not alone.
Mrs. Downey reminded us to have
confidence and remain hopeful. Even
though we can’t always control the
people or things around us, we can
decide how to respond. Kate Downey
said it best: “The worst disability is a bad
attitude.”
Although life with a special needs
child can be a roller coaster, Mrs.
Downey reminds us that life will be
what we make it. In one of her books,
she writes that you can become a professional worrier, or you can hang on
and enjoy the ride.
The wide variety of workshops and
lectures at the conference was appealing. For example, the workshop on
toilet training was encouraging, and
the information shared could be useful
for any behavior modification needed
in a child with special needs. The
sibling panel was a great resource for
families with multiple children. These
young people spoke so openly about
their joys and struggles having a special
needs sibling. Their strong character
and fierce love for their sibling reminds
us to recognize their uniqueness also.
The adult panel was, as always, full of
laughter and hope. The adults shared
their struggles growing up, their
thoughts on their jobs and families, and
many jokes and tears. While the future
may be uncertain for our kids, watching the adults with callosal disorders
reminds us that the future will come
soon enough, and that we should enjoy
our wonderful children.
As an organization, we are blessed
to have so many people willing to
donate their time and resources to
host the yearly conferences. The Dallas
conference was truly an enjoyable and
informative weekend.
-- Jessica Owens, mother to Caitlin, 12; Zac, 11; Maddy, 8; and Abby, age 4 with ACC
Welcome New Board Members!
The NODCC welcomed three new members to the Board of Directors in July:
Ross Clary, Paul Guilbualt and Allison Richards.
Ross is a Vice President/Pension Consultant for the Institutional Consulting
Group in Texas and has a 10 month old son, Jackson with ACC. Paul is a
family physician in Lousiana and has an 11 month old son, Reid, with ACC.
Allison is a marketing executive for the Atlanta Regional Commission and
has an 18- year-old daughter, Anna, with ACC.
NODCC News • FALL 2007