Karly Goes to Prom

Missing one gene should not mean a little girl has to miss her prom When Karen Diller watched her son, Kyle, go to prom several years back she said “I guess Karly will never have a date to her prom” and Kyle said right away…

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Patti Waszkiewicz: International Foundation for CDKL5 Research

The following article appeared in the Long Island Press column blog by Beverly Fortune on March 30, 2013: February 28th marked Rare Disease Day, an international day of advocacy for those living with an uncommon medical malady. Patti Waszkiewicz of Holbrook spent the day at…

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CDKL5 Moms on the Today Show

On Saturday March 2, 2013 over 30 moms from around the world gathered in NYC to meet and bond as moms of children with CDKL5. Watch them on the Today Show!

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