When Alan Shukovsky and his wife, Eva, were getting married, their rabbi told them that it was really important for their family to find a personal mission—a cause—they could support throughout their lives. Alan and Eva Shukovsky welcomed their son Grayson on April 2, 2015, but at around six months they became concerned about his … Read More
6.25.20 COVID-19 Community Update As many states begin to re-open, we want to share the following message containing the re-opening status of the U.S. Rett Clinics and guidance from Rettsyndrome.org’s Medical Advisor on returning to therapies and schools. Rett Clinic Re-opening Status The following information summarizes U.S. clinics’ re-opening status for clinical care of Rett … Read More
Exceptional Group of Scientific Leaders to Guide Foundation’s Research Investment As IRSF’s Chief Science Officer, a physician, and a mom to a teenager with Rett syndrome, I am dedicated to overcoming the challenges presented by Rett syndrome’s complexity on the research front. Recognizing that the best way to do this is to have input from … Read More
Rettsyndrome.org has just released these resources to support families who are confined to their homes We know that the shelter-in-place guidelines are especially challenging for our families caring for a loved one with Rett syndrome. Many therapies have been stopped or are being done in an abbreviated version so that gained ground is not lost. … Read More
As a foundation, we know that caring for a child with Rett can be challenging. Connecting to other families, identifying current research and therapies, and finding educational resources can empower, provide hope, and impact families living with Rett syndrome. That’s why we’ve created these educational opportunities for 2020—4 regional Ed Days and 12 RettEd Webcasts—that … Read More