I want to encourage everyone whose lives are touched by a young lady with Rett Syndrome to watch this presentation given by Monica Coenraads. It gives a wonderful overview of what Rett Syndrome is as well as the past, present, and future in research.
The end of this video reviews the different approaches that are being developed to treat and/or cure our kiddos - it is so exciting and motivates me to keep working hard each day to raise awareness and financial support to continue their efforts! I continue each day to pray for our cure!!!
On June 28, 2009 Dr. Aleksandra Djukic, Director of the Rett Syndrome Center in the Bronx, NY hosted the first of what will be quarterly Parent Gatherings. Monica Coenraads, RSRT Executive Director, gave the following presentation.
Wednesday, July 29, 2009
Curing Rett Syndrome: How do we get there?
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HI KELLY (and the Butler clan)!!! Obviously I do not get to "roam" on the internet often but thankfully did today after viewing Monica's wonderful presentation. And that led me to your site and Brooklyn's adorable photos as well as one of very handsome new baby brother! I am so excited for your family and Brooklyn will benefit so by having a sibling to love and who will love her. You will find the time and love for another child believe me and your family will blossom. Please keep posting with your progress- I hope you sail through your pregnancy and delivery. Please keep up your wonderful work with GirlPower2Cure (hope I have that correct?)- I do not have much information about it but it sounds wonderful. Larry and I have taken over the Indiana ISRF Parents Rep. position again, when the McGuires stepped down, but I am already wondering if we should have. It has been a terribly busy summer and I have not accomplished any of the plans I had. Now Sara has had a 3rd seizure today and I am wondering if she is getting ill? "Life in the RTT World"- oh well---- Blessings to your family, Susan Dockter
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