Finding Joy in the Journey - a Column by 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.
July 4, 2025 by Paige Rivard

How we foster independence in our son with Prader-Willi syndrome

Thinking about potential independence for my 15-year-old son, Jake, who has Prader-Willi syndrome (PWS), brings mixed emotions. He faces unique challenges, but he also has unique opportunities. It’s natural to feel both pride and apprehension when your child expresses desire to do things on their own — especially if…

June 6, 2025 by Paige Rivard

Detailed planning is key to pursuing our joy of traveling

School is out, and thoughts of summer travel and making family memories are here! Our family has always enjoyed traveling, which is reflected in one of our favorite quotes attributed to St. Augustine: ​​”The world is a book, and those who do not travel read only one page.”  …

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