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Valerie Tharp Byers, EdD, is an education researcher living in Spring, Texas, with her husband, Tim, and children, Will and Samantha. Valerie became a rare disease advocate in 2015 following Will’s diagnosis of Sanfilippo syndrome, a degenerative and fatal genetic disorder. Valerie is also a board member of the Cure Sanfilippo Foundation, where she works to raise the public profile of Sanfilippo syndrome to support research and clinical trials. With “Plot Twist,” Valerie hopes that her reflections on working through life’s numerous hiccups will make readers feel less alone as they face their own challenges.
I gasp as I watch the numbers flicker on the screen of our digital scale. Is that 116? 118? It’s certainly not 122, there’s no way. The anxiety I’ve been trying to meaningfully work through the past few months…
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