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Summer 2006 July,
August, September
Hi Everyone!!
Well, the 2006 conference is over, but our memories will
last a long time! For those of you that could not
attend, we missed you dearly, and hope to see you in
2008!!
About 55 families, and many professionals, attended the
conference. We started with a brief overview of the
conference and a “Getting to Know You” session. This was
followed by Dr. Melissa Parisi outlining the
consultation/research schedule for the week. Our first
night together was spent enjoying a delicious barbecue
and entertainment. Everyone had a great time - seeing
the children, seeing each other, meeting new friends and
dancing the night away.
The next few days were jam packed with workshops. First
up was our first “Key Note Speaker”, Mr. Ben Keckler.
Ben is the Brother-in-Law of Luise Reading, Board
Member, and Uncle to Judi Reading, 33 with JS. He talked
to us about “Living in THIS Moment” (see page 9). It was
the perfect start to a great conference. Ben was
welcomed into our JSF&RCD family with open arms, and,
because he said his time with our families was so
rewarding, he wants to join us for future conferences.
Our Foundation is blessed to have him join our family!
Maryann Trott presented our next workshop—Sensory
Processing in Learning and Behavior. Her program was
designed to “give families and educators basic
information related to sensory processing and how it
affects learning and behavior. Children with Joubert
Syndrome may have behavioral challenges resulting from
sensory processing challenges. These challenges cannot
be dismissed or used as an excuse for inappropriate
behavior. Developing effective behavior change programs
requires examining behaviors that are conditioned and
those related to sensory processing. Sensory processing
and behavioral techniques can be incorporated to help
children behave more appropriately.” Maryann’s program
was packed with valuable information and tools we can
all use with our children. Maryann has been a part of
our organization for many years. She last spoke at our
Chicago Conference in 1996 and has been on our advisory
panel since then. It was a pleasure to have her speak
with us again.
Our next workshop was titled “Facilitated Communication
Training” by Marilyn Chadwick MA CCC-SLP. Her workshop
reviewed the Basic Elements of Facilitated Communication
Training: 1. Physical Support, 2. Initial
training/introduction, 3. Maintain focus, 4. Avoid
testing for competence during the initial training
phase, 5. Work toward natural and open-ended
communication, and 6. Fade physical support over time.
Marilyn then covered who should use FCT, and what a
facilitator does. Her workshop was very interesting, and
opened up the possibility of having future workshops on
Facilitated Communication.
Rebecca Hallmark presented the next workshop on
Transitioning from School to the Adult System. Rebecca
came to us from the Dallas Area. She is such a powerful
speaker on the subject of transitioning from youth to
the adult system; I know her workshop would have been
beneficial for ALL families—and not just teens and young
adults closer to the transition stage. Rebecca was
positively impacted by our group and would like to do
more workshops at future conferences.
All of these great workshops were held on our first full
day! The day was packed with very valuable information,
and ended with a Parent Roundtable discussion on all
kinds of topics—from dating to friendship to college
experiences. The evening concluded with a very moving
and memorable Bereavement Ceremony where our loved ones
with Joubert Syndrome, who have passed away, were
honored and remembered.
Friday’s sessions began bright and early with Karen
Tompkins’ presentation on BRAINJUICE: How the chemistry
of your brain affects your behavior. Karen’s active
discussion focused on how specific aspects of your
neurochemistry cause you and your child to feel
angry/anxious… and how to feel better through activity.
The rest of the day participants enjoyed Carol Tashie’s
full day workshop on “Voices of Friendship”. Carol is a
powerful speaker who presented many thought –provoking
ideas and gave us a lot to think about as our children
grow and make friends.
To end the evening, our children enjoyed pizza and a
movie, and the adults had fun at the Stockyards in Fort
Worth.
Saturday was another day packed with helpful
information. The morning began with a Genetics Update
presented by Dr. Melissa Parisi and Dr. Ian Glass. Dr.
Parisi presented the exciting news that a third gene
that causes Joubert Syndrome was discovered. For more
information on this new gene discovery, please see Dr.
Parisi’s article on page 6. Please note that this
article is also on our website.
Following the informative Genetic Update session,
participants attended a workshop by Diane Lewis on
Oral-Motor Intervention. Diane’s session described how
the sensory-motor challenges in children with Joubert
Syndrome impact the development of feeding and speech
skills. Diane’s workshop was followed by group
consultations.
Alison Rickerl, one of our members, presented a very
educational and informative session entitled “Visual
Impairments in a Nutshell”. Alison, who is the mother of
a child with Joubert Syndrome and legal blindness,
discussed information on how the visual system functions
and what can go wrong in visual impairments, the purpose
of vision reports from ophthalmologists, the legal
definition of blindness, and the basics about services
for children with visual impairments. Alison had a
helpful assistant, her daughter Madison, who
demonstrated some of the basic adaptations used with
visually impaired children.
Karen Tompkins presented a wonderful session on Stress
and Relaxation Techniques—giving us all tips on things
we should do to reduce the stresses we feel every day.
Saturday’s workshops ended with a wonderful Teen/Adult
Panel hosted by Luise Reading. Panel participants
included Judi Reading, Timmy & Stephanie Duquette, Kelly
McLaughlin, and Madison Rickerl. It is so important for
us to hear what they have to say – they contribute so
much to us and help us understand how our children may
be feeling. Please see page 7 for a response written by
Judi Reading.
On Sunday, Ray Quigley, MD, Pediatric Kidney Specialist
from Dallas, presented information, and answered general
questions, about kidneys and kidney disease.
Throughout the week, families had an opportunity to meet
with all the professionals that attended the conference
this year. We had the pleasure of meeting with Dr.
Boltshauser from Switzerland. A big thank you to Dr.
Boltshauser for making such a huge journey to be with
us! From Seattle, we were happy to have Dr. Melissa
Parisi, Dr. Ian Glass, Dana Knutson, Nick Gordon and
John Adkins. From Maryland, we welcomed our newcomer and
specialist Karyn Harvey for Behavior and Neuro
Development. From Augusta, Georgia, we were pleased to
have Dr. David Flannery. Dr. Flannery is a new member of
the Joubert Syndrome Scientific Board.
A new feature added this year for our families were
support group meetings run by Ben Keckler. I received a
lot of positive feedback about these small group
sessions, and plan to have them again at future
conferences.
As you see we were all VERY busy!! But…… we also made
time to have some fun. Our children were busy daily with
a great team of childcare providers, giving our children
the opportunity to play with their peers, make crafts,
go swimming, etc. We had entertainment every day for the
children—a puppet show, a magician, zoo animals, and a
lively sing along! Our teens and young adults also had
their own time together. A big thank you to Judi Reading
for putting this program together! The teens and young
adults all enjoyed breakfast together, snacks by the
pool, and many social gatherings.
There were many unscheduled activities where families
got together, by the pool, in the pub, or in a quiet
corner of the lounge. Many new friendships were formed
during the week.
The conference closed on Sunday afternoon with a Western
Hoe Down. There were lots of cowboy hats, boots and
western attire to go along with our line dance
instruction, a cowboy doing rope tricks, and lots of
carnival games for the kids. Families also got to
participate in our Silent Auction. This major
undertaking was coordinated by Pat and Shannon Wilson,
and was a huge success! Close to $3,800 was raised
thanks to all the work from the Wilson’s, and for all of
the contributions donated from our families. A hoedown
of thanks goes out to all of you who donated, and
purchased items, for the Silent Auction!
I would also like to thank all of those who provided
sponsorships and donations (see page 4), and provided
photos for the program ads for the conference. Certain
payments that were made to the Foundation were
specifically designated as sponsorships or donations.
Other payments that were received in 2006, that fell in
to the sponsorship or donation categories, were applied
towards the conference. Your continued generosity is
very much appreciated! Thank you!
I have received many completed evaluations, and I urge
you to get them in soon if you haven’t already completed
one. If you were not able to attend the conference this
year, but would like to send in feed back on future
locations, please get in touch with me.
Regarding Foundation business, we now have a new
addition to our Board of Directors…. Mr. William
Pickett. Bill has been a part of our Foundation for many
years and has helped to build our database. We are very
pleased that he is now a formal part of our team. Bill
joined us in Irving, Texas, sitting in on a board
meeting, and getting a feel for the direction our
Foundation is heading. Bill will be a strong asset to
our board…. Welcome Bill!!
Well, that is all for now. I will be resting for the
rest of the summer as I continue to recuperate from my
second surgery. I will be back to work again full steam
ahead in the Fall. I wish you all a relaxing, healthy
summer… until next time,
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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