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RAINBOW FUNDRAISER LETTER
Dear Family & Friends:
The Joubert Syndrome Foundation is
celebrating its 15th year! Our organization
began back in January of 1992 when 3 mothers set out to
tackle the impossible. At that time, there were only 8
known families in the United States whose children
shared the diagnosis of Joubert Syndrome. Because there
was very little medical information available, these
mothers began working with the medical community to find
answers. They located more families who had children
with Joubert Syndrome, and started the Joubert Syndrome
Parents-In-Touch Network. Now, 15 years later, we have
membership from all over the world. We have expanded
our Foundation to include people with other cerebellar
disorders. We are now known as the Joubert Syndrome
Foundation & Related Cerebellar Disorders (JSF&RCD).
As
many of you know, Joubert Syndrome is a rare genetic
condition characterized by absence or malformation of
part of the brain where coordination and balance are
controlled. Infants display low muscle tone and
irregular breathing patterns. Development is delayed and
speech is difficult or absent. Our children face many
significant challenges, but they are able to defy the
predictions of the past. Children with Joubert Syndrome
previously were given a bleak prognosis. Many families
were told that Joubert Syndrome was a terminal condition
and that their child had an abnormality of the brain
that was incompatible with life. Many believed that
survival meant severe handicaps. Today, many children,
and adults, with Joubert Syndrome, are walking and
talking, graduating from high school and college, and
enjoying successful professional and social lives.
The Joubert Syndrome Foundation & Related
Cerebellar Disorders continues to spread the word about
Joubert Syndrome. As public awareness increases, more
children and adults are diagnosed with Joubert
Syndrome. This means that word is spreading about
Joubert Syndrome, and our Foundation! As a result, the
financial needs of the Foundation are increasing.
In 2008, the JSF&RCD will host our 9th
biennial family conference. Planning has begun to set
up consultations with specialists and researchers, and
to arrange speakers to present helpful information to
our families. Conference costs include meal and
lodging accommodations and speaker honorariums.
Additional expenses incurred by our Foundation each year
include participation at the Child Neurology and
Genetics Meetings, the production and mailing of family
information packets, research surveys, and a quarterly
newsletter - The Rainbow. Costs also continue to
rise as phone calls are made to families who have
questions or concerns about their child or to parents
who are reaching out for support. The Foundation has
successfully launched a database, is working on a
National Registry, and is maintaining a BioBank for the
collection of biological samples and medical information
to help further research. All of these activities are
accomplished through an active and dedicated Board of
Directors, a Professional Advisory Board and a
Scientific Advisory Board. All who serve the families
in the JSF&RCD do so as volunteers, donating their time,
money and energy to educate others about Joubert
Syndrome.
Our goal as a Foundation is to spare
other parents the isolation and despair that was once
part of the Joubert Syndrome diagnosis and to ensure
that families remain hopeful about the future for their
children. Each year, the Foundation sees the long road
ahead, but we also look back at all that we’ve
accomplished since 1992.
As
someone who knows our family personally, you have
witnessed first-hand the challenges and hard-won
triumphs of raising a child with Joubert Syndrome. We
respectfully request that you consider making a donation
to the Joubert Syndrome Foundation. There is still much
to be done from funding research to reaching out to
families worldwide who are in need of information and
support. We are thankful for any contribution you make
and for partnering with the JSF&RCD to continue to turn
the impossible to a future of hope for the children we
love.
Through
fundraising efforts, and your donations, the medical and
professional communities have a better understanding of
the future for a person with Joubert Syndrome... and it
is hopeful! Progress continues to be made; however,
there is still have a long way to go. Thank you for your
support!
Joubert Syndrome
Foundation is a non-profit organization with 501-C-3
status. (Tax ID #52-1871536)
Yes, I would like to help the JSF & RCD, Enclosed is my
gift of $_____________.
This gift is in honor of
_____________________________________ (child with
Joubert Syndrome or Related Cerebellar Disorder).
This donation has been made by:
NAME
__________________________________________________________
ADDRESS_______________________________________________________
CITY _________________________________ STATE ________
COUNTRY ______________
Please circle: Visa or MasterCard
Credit Card Number
_________________________________________
Expiration date _____________________
Name on Credit Card
_______________________________________________
Signature__________________________________________________________
Types
of payment accepted: Money Orders, Cashier Checks,
Checks (US Currency Only), Credit Cards (Visa, Master
Card)
Please send your gift to:
JSF & RCD
c/o Janet Gundling
8 Ash Road
Jackson NJ 08527
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