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…
Finding Joy in the Journey - a Column by Paige Rivard
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.” …
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 after my husband and I were married, when we were excited for the future we would…
Recent Posts
- Sensory processing issues act as major driver of irritability in PWS
- Heart data prompts FDA to halt trial of Prader-Willi syndrome drug ARD-101
- May brings awareness days, a sweet 16, and a reminder from peonies
- Phase 2 trial of nasal spray for Prader-Willi hunger delayed to 2027
- Infants with PWS show early blood flow changes in key brain regions
- United in Action campaign kicks off PWS Awareness Month
- Gene therapy delivers lasting weight loss, metabolic benefits in PWS mice
- Study uses mobile app to collect data on PWS caregiver burden
- Study shines light on how Prader-Willi kids experience puberty
- The quiet and noble work of caregiving in Prader-Willi syndrome