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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.
As February bleeds into March, which then bleeds into April, our family is caught up in a slew of emotionally taxing anniversaries. This month we … celebrated? Dealt with? Survived? Recognized? … that it has been eight years since…
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