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Winter 2005 January, February, March
HAPPY NEW YEAR to everyone…..
Yes, you read that right. A letter from the Vice
President. The President and Co-Founder of the Joubert
Syndrome Foundation & Related Cerebellar Disorders,
Cheryl Duquette, is busy with the placement of her
daughter, Stephanie, and asked me to write the letter
for this issue. She sends her best to each and every one
of you.
My name is Michele Abdulaziz, Vice President and Family
Resource Coordinator for the Foundation. The Foundation
is in its 13th year. Every year it gets better and
better! To date, there are over 600 families in our
Foundation. We continue to grow every year. Just think,
our Foundation all started with 3 women sitting around a
kitchen table 13 years ago. We’ve come a long way since
then!
For those that have not been in touch with the
Foundation for the past few years, we’ve changed our
name and logo. We are now the Joubert Syndrome
Foundation & Related Cerebellar Disorders. We made this
change to encourage other families who have received a
diagnosis of any type of cerebellar disorder, to reach
out to us to find comfort and support from our families.
Support from others that know exactly where you are
coming from is an incredible feeling. We’ve made
tremendous friendships along the way, too!
The Internet has made it much easier to stay in touch
with families. Families really enjoy being able to
contact other families all over the world. It is
wonderful to communicate with people from other states
and countries and then meet them in person at a
conference! If you have any questions about getting in
contact with other families, please ask a board member
and we will be happy to help get you connected!
One of the goals of the JSF & RCD is to attend meetings
and educate others (doctors, researchers, students,
families, communities, etc.) about JS. This year, for
the first time, the JSF & RCD will attend the American
College of Medical Genetics (ACMG) Clinical Genetics
Meeting March 17 - 20, 2005, in Dallas, Texas. As we do
at other meetings, we will spread the word about Joubert
Syndrome. By educating doctors, families who are given
the JS diagnosis also receive more information about
this disorder, and learn about our Foundation. I’m sure
you will agree that the support you receive from this
Foundation is almost as valuable as the information your
physicians give you about JS.
In the next newsletter, we will provide an update on our
new list of officers and board members. These
representatives will also be listed on the JSF website.
Please know that you can contact any of the officers or
board members at any time with questions, comments or
suggestions. Our Foundation also has Regional
Coordinators that are available to you. In addition, we
recently started a State Contacts list. You can look on
the website to see who the contact is in your State. If
you would like to be a contact for your State, please
let a board member know. We are also trying to expand
contacts for international families. International
contacts are listed above under Regional Coordinators.
If you would like to be a contact in your state, country
or province, please contact us. Having someone close by
that you can talk to is very comforting and helpful as
they might be able to direct you to people or agencies
to get services for your child, or be familiar with the
school district, doctors, and therapists in your area.
We’ve received some questions about the 2006 conference
, and we know how anxious everyone is to hear about the
location. The conference committee is still working on
choosing the location. We hope to announce it soon so
you can begin your planning and start saving. It is a
good idea to start looking now for help with funding
your trip to the next conference in 2006.
As some of you know, the Foundation has its own
Bio-Bank. If you are not familiar with the Bio-Bank,
here is a little summary. A Bio-Bank is basically a
blood bank. You can have your child’s blood drawn and
“deposited”. Scientists can make “withdrawals” of DNA to
conduct their research. Your child and your family (mom,
dad, brother(s), sister(s)- yes we need siblings as
well) only need to have blood drawn once. If you would
like more information about the Bio-Bank bank and how
you can participate, please contact Bonnie Tolles, Era
Hall, or Eric Rosenthal, or visit the JSF website at
www.joubertsyndrome.org and look under the
Bio-Bank section. At the 2004
conference, we had many participants make “deposits”,
and we’d like to encourage you to participate in the JSF
& RCD Bio-Bank, too. On behalf of the Foundation, thank
you for your participation and we look forward to
receiving future “deposits”.
In this newsletter, please find our annual membership
application/form. When you join the Foundation, you
receive our quarterly newsletter (this first issue is
complimentary to all families in our database), and
other materials throughout the year. Each newsletter is
packed with great information and stories about families
(which we all really enjoy reading—please continue to
share your news with everyone!). Please fill out the
application and include your current address, phone
number, email address, etc, so we can update your
information in our database.
Here’s a friendly reminder—Don’t forget to follow the
yearly recommended evaluations as outlined on the JSF
Website (www.joubertsyndrome.org) under the “Physician's
Research” section:
Recommendations for Evaluation and Monitoring of
Patients with Joubert Syndrome and Related Disorders.
If you are already following a set schedule, WAY TO GO.
If not, why not take time now to set up a schedule for
your child. I know that some of these things we don’t
like to do, but they are very important!
In closing, I want to thank each and every one of you
for helping make the Foundation what it is today. Our
“family” continues to grow every day. We work together
in every way possible—from supporting each other,
sharing our ups and downs, sharing our stories and our
children’s progress, and raising money and awareness to
help keep us moving along the right path. Please
continue to support the Joubert Syndrome Foundation &
Related Cerebellar Disorders.
Until next time, your friend and Vice President,
Michele Abdulaziz
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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