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!