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Board of Directors Welcomes Alan Shukovsky —The Father of a Boy Living With Rett

Friday, July 10, 2020

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

COVID-19 Message for the Rett Community

Thursday, June 25, 2020

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

Rettsyndrome.org Announces New Scientific Advisory Board

Thursday, April 30, 2020

Exceptional Group of Scientific Leaders to Guide Foundation’s Research Investment As Rettsyndrome.org’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

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NEW Resources to Empower & Equip You During COVID-19

Friday, April 17, 2020

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

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Knowledge is Power

Monday, January 27, 2020

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

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