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Summer 2005 July, August, September
Hello Everyone,
Things keep moving in the right direction with our
Foundation. The board has had a busy summer coordinating
our committees, getting our new board members up to
speed on our goals, and delegating jobs to each team
member. I am very excited about their enthusiasm and
willingness to find out past information in order to do
their best for the future of our Foundation. The board
members met last month in Rockville, MD in conjunction
with the National Genetics Alliance meeting. We were
able to meet face to face for a board meeting, as well
as attend workshops on issues related to running the
Foundation.
As Fall approaches, I am preparing to represent our
Foundation at the annual Child Neurology and Genetics
meetings. Participating at these meetings gives our
Foundation the opportunity to spread the word about
Joubert Syndrome and Related Cerebellar Disorders. It is
also a great opportunity for me to meet with our
scientists and get updates as we plan our next
conference.
Conference 2006 will be here before you know it! The
cost to host a conference every 2 years is very large.
Some of the items that make up our registration costs
include meals (hotels do not allow outside food, so we
have to assure a certain amount in catering in order to
get free meeting space), speaker's meals and hotel and
travel costs, scientist's meals and hotel and travel
costs, rental of audio visual equipment, child care
expenses, and entertainment for our children and
families. We are hoping to reduce the registration costs
to families next year, but this will depend on money
raised from donations throughout the year, as well as
conference sponsorships and advertisements. We can do it
if we all work together!
We plan to put together a conference
advertisement/acknowledgement booklet with ads and
special messages from families and friends. Please ask
your family and friends if they'd like to participate.
Including pictures of you, your children, and your
children's grandparents, would be a wonderful addition
to this booklet! We will also include an acknowledgement
to all those companies who sponsor a function at our
conference like a lunch or a dinner.
It is a great idea to start working on your own
fundraiser ideas now. This can really help you offset
your own expenses for the conference. Several families
who attended previous conferences have been able to
raise enough money to have all of their expenses covered
from airfare to hotel bills to registration costs.
Please share your fundraising ideas with others. If you
have any ideas that have worked for you in the past or
letters that you sent that helped you raise money, send
them to me (or to the newsletter editor) so they can be
shared in the conference registration packet, and in
newsletters.
If you have any ideas on conference session speakers, or
if you have heard of somebody good, please send the
information my way. I was able to get Mary Ann Trott to
come back and speak at our next conference. She is one
of our professional advisors (listed on the back of the
newsletter). Mary Ann gave a presentation at our 1996
conference in Chicago. Her session on sensory processing
was very valuable; you won't want to miss hearing her
and asking her your questions.
I wish everyone a happy end to your Summer as you hustle
and bustle with all the preparations for school.
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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