Our six year old Rose has a rare brain condition, Dandy-Walker syndrome. I am writing to let you know of support and research organizations, upcoming events, and Congressional action.
For more information about the condition, the Dandy-Walker Alliance has a website at this link:
http://www.dandy-walker.org/
I hope you will take some time to explore the site, learn more about the condition, find opportunities for advocacy, and meet some delightful individuals.
For those in the Denver area, a new documentary is scheduled to premiere here in January. In "Dandy Kids," one boy's aunt connects with families around the world in search of of what it means to live with the many faces of Dandy Walker Syndrome, and how she can help those receiving a diagnosis to look for answers. I am inviting you to join our family at the first screening of this movie, now scheduled for release on January 17, 2008. I hope you will put it on your calendar now, and watch for details regarding time and location.
Finally, the U.S. House of Representatives is currently considering a resolution in support of further research and activities to increase public awareness, professional education, diagnosis, and treatment of Dandy-Walker syndrome and hydrocephalus. To express your support of this resolution, please contact your Representative to ask that they sign up as a co-sponsor of House Congressional Resolution 163. It's really a simple process. You can look your member up at: http://www.house.gov/writerep/ and then navigate to their contact page to learn their Washington, DC office phone number. When you call, ask to speak to your member's Health Policy Legislative Assistant and express to this individual your desire for the member of Congress to co-sponsor the non-binding House Congressional Resolution 163 on Dandy-Walker.
I would love to talk with you more about this if you have questions. Leave your question as a comment, and I will get back to you right away.
Thank you for your interest in and support of this syndrome and the resolution.
1 comment:
thank you for your page with information
i know little about the DWS but i've been learning a bit more since i ve looked on internet for people who share their stories.
so here's mine...
a year ago i was 20 weeks pregnant when i found out it was a DW baby with very severe conditions.
i had an abortion ans after autopsy to the fectus i was told it was a very serious brain damage. me and my partner had some tests and were informed that the chances of a future DW pregnancy are 25% which means it'll happen again.
i'am terribly scared... i been tracing back our families and we have no one with DWS which leaves to wonder what are the causes?
can you help me?
what might be the causes for a DW baby?
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