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I was the original Regional Rep…but my region was the whole world! At the time we called the program Parent to Parent. I kept a list of parents who were willing to be contacted, and whenever we got a new PRISMS member, I would call them and chat to see what they needed. Then I tried to connect them to another parent, either in their area or someone who had a child the same age. So I’m not sure how long ago I started, but I know it’s been more than 20 years.
On December 1, 2020, the Food and Drug Administration (FDA) approved the use of HETLIOZ® (tasimelteon) capsule and liquid formulations for the treatment of adults and children, respectively, with nighttime sleep disturbances associated with Smith-Magenis Syndrome (SMS).
My name is Haley and I am 23 years old, the youngest of three children. My oldest sister, Kristen, is 29, and right in the middle of us is Carley, who is 27 and is diagnosed with Smith-Magenis syndrome. Growing up, Carley always created exciting energy in our home. With her laughter, enthusiasm, and love for making conversation, her spirit was contagious.
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