Finding Joy in the Journey — Paige Rivard
Paige Rivard is the former CEO of the Prader-Willi Syndrome Association and a mom to her son, Jake, who is living with two rare genetic disorders: Prader-Willi syndrome and neurofibromatosis (NF1). Paige has over two decades of experience in both corporate and nonprofit sectors. She brings a unique blend of experience through executive leadership, strategic vision, and rare disease advocacy. Paige and her family live in Nebraska. Her lived experience as a rare disease caregiver and founder of a Nebraska Prader-Willi syndrome nonprofit fuel her advocacy and desire to spread awareness, education, and hope.
Our son’s Prader-Willi diagnosis sparked journey of advocacy, hope
People often ask me, “How did you become such a strong advocate?” Many times, I’ll begin my story with the birth of our son, but it really started when I was 24. A year…
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