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…

A break from daily routines brought anxiety, then freedom, for my son

There is a word that has governed our family for 16 years: structure. With a child diagnosed with Prader-Willi syndrome, that is something we strive for — set mealtimes, routines, a scaffolding that keeps my son Jake’s world legible and his anxiety at bay. So when we left home…

Summertime with PWS means sun, fun, and structure

Summer always used to sound so simple to me. It meant slower mornings, later bedtimes, popsicles on the porch, and playing outside until the sun went down. Now that I’m the parent of a child with Prader-Willi syndrome (PWS), summer isn’t so much this idyllic setting, but rather a…

May brings awareness days, a sweet 16, and a reminder from peonies

There is a corner of my yard that quietly tells the story of four generations. The peonies blooming there started in my great-grandmother’s garden. When she passed, my grandmother replanted them in her backyard. When she was gone, I knew I wanted them in my yard. Every May, those same…

The quiet and noble work of caregiving in Prader-Willi syndrome

Caregiving for someone with Prader-Willi syndrome (PWS) is a role that often requires extraordinary commitment, consistency, and compassion. Much of this work happens quietly, behind the scenes, and without recognition. Yet it is some of the most important work that gets done each day. When I think about…

Collecting pop tabs is a small act that makes a big impact

When you open a can of soda, you might not give much thought to the little aluminum tab you pull up. For most people, it’s just a piece of metal, tossed away without a second thought. But for our family — and especially for my son living with Prader-Willi…

Celebrating a milestone in life with Prader-Willi syndrome

On Jan. 1, our 15-year-old son, Jake, walked off a plane from Los Angeles, having traveled entirely on his own for the first time. As he came through the gate with his backpack and a beaming smile, a wave of emotion washed over me — pride, relief, joy, and most…

How Prader-Willi families can enjoy the holiday season

The Christmas season has always been my favorite time of year. I treasure memories of going to the homes of my grandparents and great-grandparents, large family gatherings, the big “box bash” on Christmas Eve, the smell of freshly baked treats, and anticipating the day I could move up to the…