A lot can happen in a year, as they say.
It’s hard to believe that it’s already been a year since our inspiring gathering in Philadelphia of Skraban-
Deardorff Syndrome families from around the world. Shortly after that meeting, a dynamic group of parents
launched the newly formed nonprofit organization, the Skraban-Deardorff Syndrome Foundation.
Main goals of the foundation include promoting awareness, fostering relationships, raising funds to support
research and engaging some of the best minds in science to help understand the WDR26-related intellectual
disabilities. In response, many supporters responded generously and we are extremely grateful.
One of our first research endeavors we will be participating in a Neurodevelopmental Assessment Study. This project is being led by Dr. Tom Frazier, an international expert in neurodevelopment, to better understand aspects of cognitive and behavioral development in patients with Skraban-Deardorff Syndrome. Once we have a better idea of the developmental features of patients with changes in the WDR26 gene, we will be able to accurately assess the benefit of future potential treatments or interventions.
We have been able to provide some initial funds to assess a limited number of children; however, we would
love to involve as many children with Skraban-Deardorff Syndrome in this study as possible. To that end, the
Foundation is launching a campaign to raise $26,000 in order to study an additional 20 children with a WDR26-
related intellectual disability diagnosis. Your support in accomplishing this would be deeply appreciated.
Would you or someone you know be willing to help? The Foundation has made it easy to be involved. You
could mail a check to the address below, make a store or magnet purchase, or click to donate. Regardless
of which method you choose, please know that your support will go directly to funding this and other important research projects.
If you have any questions, please email email@example.com Thank you for your care and consideration.
Cara Skraban, MD
Human Genetics Attending Physician
Children’s Hospital of Philadelphia
Matt Deardorff, MD, PhD
Director of Translational Genomics
Children’s Hospital of Los Angeles
Your support means the world to us!
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14039 Hwy 74 E
Suite A6 #123
Indian Trail, NC 28079
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