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Spring 2006 April, May,
June
Dear Friends,
The time is
getting closer to the big day - “JULY 5” - when we
will meet in Irving, Texas!! In this issue, my
letter will be short and sweet as I am very busy
with final preparations for the conference.
Please continue
to keep checking our web site for changes and new
additions to the conference agenda. I need to know,
as soon as possible, how many families may be
interested in the Six Flags Trip and the Stockyards
Trip. We will be reserving a bus for these events;
if we don’t have enough families attending, I will
need to cancel the bus reservation. Please either
email or call me with your interest in attending one
or both of these trips. Please let me know ASAP—even
ahead of your registration! Thank you!
A lot has been
added to the agenda. The most up-to-date version of
the agenda is included in this newsletter (p.11). We
have added a lot of entertainment and fun to the
conference—which is sure to be enjoyed by ALL!!!
Additional highlights include speaker Marilyn
Chadwick who will hold a workshop on “Using
Facilitation for Effective Communication” .
Marilyn Chadwick is a speech/language
pathologist who has worked for the Facilitated
Communication Institute since 1992, and
currently directs and provides training locally,
nationally and internationally. In speaking
engagements which include cities around the
country as well as in England, Germany and the
Netherlands, she commonly combines with FC users
to provide audiences an insiders’ understanding
of the benefits of the method. In 2000 she
chaired an international committee that worked
to publish standards on Facilitated
Communication. Marilyn has been a leader in
supporting FC users to work toward independence.
In the past six years, Marilyn has become
certified in Prompt, and Feldenkrais and is
currently developing her skills with ‘floortime’
to help FC users gain independence and/or
speech. She resides in Syracuse with her husband
and college age son, Josh, and travels regularly
to visit her other children and her
grandchildren.
Facilitated Communication is a method of support
that enables a person who cannot speak and whose
hand use is unreliable to access a device for
communication. Support typically involves
physical resistance to the hand or arm in order
to stabilize and slow down the person’s
pointing. By effectively pointing to
communication targets, a person can make
personal choices, participate in conversation
and express their ideas and feelings. This
method has been used in the United States since
1990 with people of all ages and disabilities.
This presentation will give foundational
concepts of the method, outline the process for
training, and highlight examples of its use with
people diagnosed with Joubert syndrome.
Our conference
will conclude with a “Texas Hoe Down”. Many fun
things are planned, including line dancing
instruction, a roper doing rope tricks and teaching
us all how to do them, carnival games, face painting
and our Silent Auction.
We hope to see you
there so “C’mon down y’all”!
With our
upcoming conference comes a change that the
Board of Directors voted on in January. I am
rerunning that statement from my last
President’s Report in case anyone missed it.
“Previously each January, several Board of
Director terms have come up for renewal. At our
last Board of Directors meeting, (January 17,
2006) a decision was made to coincide terms with
our Biennial Conferences. We will have a new
process of electing the Officers and Board of
Directors who will help run our Foundation. This
will take place at the Biennial Conference in
July during our General Membership Meeting. As
our membership grows, so too does our Board! We
are looking to expand our Board to include
family members, and individuals who don’t
necessarily have a direct involvement with a
child with JS. If you or anyone you know is
interested, and are willing to commit to a 4
year term, please send a resume and cover letter
to our Secretary, Karen Tompkins, by March 31,
2006.” Since the last newsletter, I have
received only 1 inquiry to serve on the board.
If anyone else is interested, and has not sent a
letter of intent and resume to me, please do so.
I will continue to accept them prior to the
conference. “Voting of paid members will take
place by ballot at the Conference. If you will
not be attending the conference, and you are a
paid member, you may submit your vote prior to
the Conference. A ballot will be available on
our website. Ballots will be sent back to the
Secretary by mail or email. All votes will be
tallied at the General Meeting. Newly elected
Board members will be announced in the Summer
newsletter.
We welcome and encourage your participation to
work on short or long term projects with any of
our committees. Please contact any of our Board
members via email or phone to offer your support
in helping us make a difference!”
Well, that just about wraps up this
newsletter. I will see y’all soon!!
Your friend and President,
Cheryl
Duquette
If you have any questions, please feel free to contact
Cheryl via email or by phone 410-997-8084.
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The views expressed do
not necessarily reflect those of the donors. The articles,
announcements, and resources included on this website are
for information only and should not be considered as medical
advice. Please always consult your physician for medical
advice. The Joubert Syndrome Foundation & Related Cerebellar
Disorders does not endorse any product, service, or theory
referred to on the website.
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