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$5,000
goal
$1,205
Raised so far

24 % to goal

SHARE & CARE COCKAYNE SYNDROME NETWORK

2010 Butterfly Walk for Cockayne Syndrome - California Santa Rosa,  California

Donations as of September 02, 2014:

$0.00 Raised Offline
$1,205.00 Raised Online
$1,205.00 Total Raised

Edward Viljoen's Fundraising Page

Everybody falls in love with Isabella Theresa!   It's the eyes I think, or the hair, or... I don't know...It's just her....I fell for Bella at her baptism ceremony.  So when her mom asked me to participate in this fundraiser for the rare genetic disorder Bella has, I knew I would.
 
At first I couldn't even remember how to pronounce the name of the disorder - and  hardly anyone I know had heard of Cockayne Syndrome (CS)  a rare genetic disorder characterized by poor growth, microcephaly, progeria (premature aging), sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan.  That's what makes it so tender - its easy to minimize the need for support when the disorder is so rare and so few people know about it.  But it's impossible to minimize it when you know someone who has it.

Because it is so rare, funding for educational programs, exchange of information and support for research is slim.   So we raise funds!!
 
The Share & Care Cockayne Syndrome Network and our Medical Advisory Board members  have coordinated the first scientific conference focused only on Cockayne Syndrome, which was  held in September 2009 with the leading researchers in the field of CS from around the world gathering in Boston, Massachusetts to share information that will assist researchers and increase interest in helping CS patients.  That's where your contributions will go, to further the work of the Share and Care Cockayne Syndrome Network.

Thank you for visiting my fundraising page!

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

Much love,

Edward Viljoen

 

 

Supporters

Comment Donation
Michelle Thank you.
$100.00
Daisy B On behalf of Daisy B
$5.00
Diane and Dave Lots of Love
$25.00
Kathleen Geier Edward - thank you for being the
$25.00
Kim Dolinsek With Love
$20.00
Zanne Dawson
$20.00
Elaine Leitner & Lynette Gosch
$20.00
Kathy Rosenberg
$50.00
Tracy For Bella
$40.00
Mathew
$50.00
Sanna Rose Blessings
$20.00
Sherry H Who can resist adding more love for this beautiful child.
$20.00
Susan Overland Blessings to this child of joy!
$25.00
Ingeborg H. sweet blessings from the heart
$50.00
Pam J With love
$20.00
C J Only love
$20.00
Liz M
$50.00
Christine Ruzick With love and compassion, all the maladies of the world will cease to exhist.
$25.00
Anonymous Many Blessings
$50.00
Sue Deane ♥♥♥♥♥
$25.00
Lionel Babies melt my heart too. Public transportation has babies on it, so I love public transportation.
$5.00
Christopher blessings and love
$50.00
Center for Spiritual Living San Jose We are inspired by you!
$100.00
Gloria Diamond Conley Sending love and support...
$20.00
Michael Gott much love
$50.00
Karen Weingard I honor the gift of this child as a profound teacher
$100.00
Robin Smith Here is a few seeds to plant.
$25.00
Rev. Michael Torphy Blessing your cause!
$20.00
Bob Hart
$100.00
SharePrayer Many donations = lots of research and relief...
$25.00
Anonymous
$50.00

Donation Summary

Raised Offline
$0
Raised Online
$1,205
Total Raised
$1,205
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