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Fall 2005 October, November, December
Hi Everyone,
Happy Thanksgiving!! I say that because not only will it
be here before we know it, but it is also that time of
year when I like to thank everyone in the Foundation for
all that they do. This Foundation exists because of all
of you. The support, friendship and advice we all share
with each other is invaluable, and it is what keeps us
all strong as we keep on going.
The JSF&RCD also exists because of our strong and
dedicated Board of Directors. I want to let you all in
on a little secret.. at every board meeting, I hear the
same statement over and over- "in the best interest of
our families and children". That about says it all.
Every decision made and project worked on is always done
in the best interest of your children and family. I know
that gives me great comfort as a parent and a
representative of our Foundation.
Now down to business! October has been a very busy
month. The annual Child Neurology meeting took place in
Los Angeles and the American Society of Human Genetics
meeting was in Salt Lake City. Both meetings were very
successful, having lots of attendees. I met with several
doctors who care for many of your children, and some
doctors who were interested in learning more about
Joubert Syndrome. We continue to spread the word
educating professionals about Joubert syndrome and
related disorders. I was very happy to hear from a
couple of scientists who, because they visited our booth
last year, were able to diagnose several patients who
previously had no diagnosis.
There were several abstracts about Joubert Syndrome
presented at these two meetings, and there will be
papers published soon. The authors were Dr. Joe Gleeson,
Dr. Melissa Parisi and Dr. Dan Doherty. Each of these
doctors are very familiar to our Foundation; it is
thanks to their dedication and research that
advancements and information about Joubert Syndrome
continues. When the articles become available, we will
post them on our web site.
Conference Update: In this issue of The Rainbow is a
flyer about our next conference. This flyer includes a
section of questions for your to complete and send back
to me. This information is very important-please give me
your feedback as soon as possible. The answers you
provide will be helpful in preparing the conference
packets and sending them to all of the families who are
interested in attending the conference. I continue to
work with our scientific team on the scientific portion
of our conference. Positive feedback from previous
conferences stated that families have enjoyed having,
and want to continue to have, individual consultations
with the researchers and scientists. This year we have
decided to limit the research that takes place, and
schedule individual meetings with the doctors and
specialists of your choice. This will be your time to
ask any questions you may have pertaining to your child.
Please understand that they can not examine your child
as they are not licensed in the state of Texas. They can
provide you with their expert advise and knowledge.
Diane Lewis will also be available for individual
consultations on speech and language.
Please feel free to add comments and or requests that I
may have missed on this form and I will do my best to
accommodate and/or answer your questions. Check out our
website for new additions as the planning continues.
Included with the last newsletter were forms for you to
use to get sponsors for the conference. This is
definitely a way you can help our Foundation keep our
costs down. Now is also the time to have "kitchen table"
fundraisers to assist you in getting to the conference.
Many families have raised money to cover the costs to
have their entire family come to the JSF&RCD conference.
Please note 2 changes on the conference flyer: 1.) The
conference dates have changed the by 1 day. The new
dates are July 5 - 9th, 2006; 2.) We are very pleased to
have Ben Keckler as our Key Note speaker at this
conference. Mr. Keckler is an uncle to Judy Reading and
his sister Luise sits on our Board of Directors. His
Biography will be up on our web site soon, so please
keep checking in.
That is all of the Foundation business for now. As
always, if you have any questions please feel free to
contact any board member.
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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