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.

School emergency plans must include the needs of students with disabilities

Last Friday’s lockdown at my son’s high school brought the kind of phone call no parent wants to receive. My 16-year-old son, Jake, who’s living with Prader-Willi syndrome (PWS), called to tell me he was outside by the football field in an equipment garage, and they were under lockdown…

Lessons I’ve learned on my journey of caregiving

If you’d told me 15 years ago, when my son was diagnosed with Prader-Willi syndrome, that I’d one day be fluent in complex medical terminology, juggle multiple therapy schedules, and still find ways to laugh, I probably would’ve raised an eyebrow and reached for another cup of coffee. But…

Navigating the peaks and valleys of life with Prader-Willi syndrome

The past two weeks could be described as a master class in emotional whiplash — a wild ride that would leave even the most stoic parent reaching for the breath mints and tissues. Last month, I wrote about riding the emotional roller coaster of Prader-Willi syndrome (PWS), and…

Riding the emotional roller coaster of caring for my son with PWS

There are days, sometimes even weeks, when life as a caregiver for my 15-year-old son, Jake, feels almost normal. Our routines are established. His medications are working, and his therapies are consistent. Most importantly, he’s managing the symptoms of his two rare genetic disorders, Prader-Willi syndrome and neurofibromatosis…

The stakes feel higher as my son with Prader-Willi starts high school

Preparing for my son Jake’s first year of high school stirs a complicated mix of pride, hope, and anxiety. Unlike most freshmen, he carries with him the weight — and the resilience — of navigating not one, but two genetic disorders: Prader-Willi syndrome and neurofibromatosis type 1. Every milestone…

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…

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.”  …