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Curing Rett Syndrome: How do we get there? PART II

May 26, 2010

On April 18, 2010 the Rett Syndrome Center at The Children’s Hospital at Montefiore in the Bronx hosted their third Parent Gathering.

I presented the second part in a series explaining RSRT’s research strategies and the very interesting scientific tools and discoveries on which they are based. I want to make this work comprehensible to parents and other interested members of the lay community, so that families have a perspective on research that is grounded in clear understanding of some unique and very hopeful possibilities. Several of the topics discussed are also the focus of RSRT’s most recent scientific meeting, which yielded a rich exchange of ideas and is catalyzing new partnerships and directions to explore. I will discuss RSRT’s dynamic approach to meetings in an upcoming blog. Viewers who have questions or comments about the video presentation are encouraged to contact me.

Three other presentations at the April 18 gathering will be online shortly. Director of the Rett Syndrome Center, Aleksandra Djukic M.D., Ph.D, summarizes a recent scientific workshop, organized by Dr Djukic and sponsored by RSRT, convened to brainstorm about appropriate clinical trial design. Dr. Shlomo Shinnar, a clinical trialist and Professor of Neurology and Pediatrics at Montefiore will share his vast experience on the topic.

Michael Beloff of the Barnum Financial Group, an office of MetLife, discussed aspects of legal planning with our children in mind, in a talk entitled Family Dynamics of Special Needs Planning.

These discussions will be available at the Montefiore website so that parents unable to attend in person can always have free access to this information.