Sarah’s 8th grade graduation
Sarah’s 8th grade graduation
Sarah with her sisters and cousins
Sarah with her sisters and cousins

Announcements

November 25, 2015 - Huda Zoghbi and her lab member Yehezkel Sztainberg announce their lab findings that MECP2 Duplication Syndrome can be reversed.

February 18, 2014 - Neuren Pharmaceuticals granted Orphan Drug Status by the FDA for NNZ-2566, now known as Trofinetide.

August 21, 2013 - Systemic delivery of MeCP2 through “gene therapy" rescues behavioral and cellular deficits in female mouse models of Rett syndrome.

May 20, 2012 - New study suggests targeting long genes could be a new treatment avenue for the devastating childhood disorder Rett Syndrome.

May 29, 2008 - Until now, scientists thought that the gene behind Rett syndrome was an "off" switch for other genes. But the new study, published today in Science, shows that it is an "on" switch for a startlingly vast number of genes.

July 2007 - International Rett Syndrome Association and Rett Syndrome Research Foundation merge to create the International Rett Syndrome Foundation (IRSF).

February 8, 2007 - The symptoms of Rett Syndrome were reversed in a genetic mouse model study by Adrian Bird, Ph.D., of the University of Edinburgh.

2006 - Duplication of MECP2 gene also leads to neurological and cognitive problems in boys. Possible link to role of anxiety in behavior patters.

2005 - Nearby gene, STK9, mimics Rett in onset, giving opportunities for diagnoses, clarification of biochemical pathways. MECP2'S protein relationships to other genes established.

March 8, 2004 - New studies show Rett-like symptoms circumvented in mice.

October 24, 2003 - IRSA (International Rett Syndrome Association) recently elected Sol Varon to the board of directors.

October 23, 2003 - The CBS affiliate in Sacramento, CA produced and televised a video short, Rett Syndrome: A Family's Fight For A Cure, featuring Sarah. This will be sent to all CBS affiliates for televised showing.

Lindsay, Sarah and Lilly
Lindsay, Sarah and Lilly
Alix, Sarah and Lilly
Alix, Sarah and Lilly