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Transmissions
A frequently updated glimpse into our world, forever
changed by Batten Disease.
I'd love to hear from you. Please feel free to email me!
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Thursday, June 28, 2007
Research Update
Mom and I are going to Rochester in mid-July to attend the 11th International
Congress on Neuronal Ceroid Lipofuscinosis (the fancy name for Batten Disease). There, we hope to deepen our understanding
of Batten Disease and current research as well as evaluate the different projects out there for funding purposes. Time
is not on our side, but we're very excited to say that there is a lot of brilliant work going on in the research arena,
and Taylor's Tale is ready to fund something! Thank you to all of our gracious donors for making that a reality.
Your generosity will play a major role in the advancement of Batten Disease research--something that could potentially have
a direct effect on Taylor's life. I want to also say, though, that we're not there yet. We've made amazing
strides since formally kicking off our efforts in February with Chapter One, but there's still a long, difficult road
ahead of us, and we won't succeed without significant funding, greater public awareness, lots of love and--as always--some
luck. We will find a cure, but at the same time, this disease isn't going to go down without a fight.
For more information about the Congress, visit the BDSRA website, or simply click on this link: http://www.urmc.edu/ncl2007/.
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Batten Disease Research
www.bdsra.org
Last Updated 7/2/08
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