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RAINBOW FUNDRAISER LETTER
Dear Family & Friends:
The Joubert Syndrome & Related Disorders
Foundation is celebrating its 20th 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, 20 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 & Related Disorders
Foundation (JSRDF).
As
many of you know, Joubert Syndrome (JS) 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 JS previously
were given a bleak prognosis. Many families were told
that JS 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 JS
and Related Disorders, are walking and talking,
graduating from high school and college, and enjoying
successful professional and social lives.
The Joubert Syndrome & Related Disorders
Foundation continues to spread the word about JS and
RD’s. As public awareness increases, more children and
adults are diagnosed with JS & RD’s. This means that
word is spreading about JS & RD’s, and our Foundation!
As a result, the financial needs of the Foundation are
increasing.
In 2013, the JSRDF will host our 11th
biennial family conference in Minniapolis, MN July
2013. 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 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&RDF do so as volunteers, donating their time,
money and energy to educate others about Joubert
Syndrome & Related Disorders.
Our goal as a Foundation is to spare
other parents the isolation and despair that was once
part of the JS & RD’s 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 JS or Related Disorder.
We respectfully request that you consider making a
donation to the Joubert Syndrome & Related Disorders
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
JS&RDF 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
Related Disorder... 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 & Related Disorders Foundation is a non-profit
organization with 501-C-3 status. (Tax ID #52-1871536)
====================================================================================================
Yes, I
would like to help the Joubert Syndrome & Related
Disorders Foundation, Enclosed is my gift of
$_____________.
This
gift is in honor of
_____________________________________ (child with
Joubert Syndrome).
This
donation has been made by
Name
________________________________________________________________________
Address
________________________________________________________________________
City _________________________________ State
________ Country ______________
Please
circle: Visa 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: JSRDF*c/o Jon Morgan *414 Hungerford
Dr, Suite 252 *Rockville MD 20850
You may
also send donations online at
http://www.joubertfoundation.com/Donations.asp and
please specify the family/child’s name and Rainbow
Fundraiser. Thank you for your support!
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