PWS Roadshow Breaks Isolation for Rare Disease Families

The Prader-Willi Syndrome Association (PWSA) of Oregon and Washington is celebrating the immense success of its recent regional Roadshow stops in Bellingham and the Tri-Cities. These foundational gatherings served as vital resource hubs and community-building events for families navigating Prader-Willi Syndrome (PWS), a rare genetic disorder.

The momentum is now moving to Central Oregon. The PWS Roadshow will make its next highly anticipated stop in Bend on Saturday, June 27. Organizers hope to replicate the magic of the Washington events by uncovering “hidden” families in the region, fostering new local friendships, and delivering vital educational, behavioral, and nutritional resources.

Because PWS is exceptionally rare, families frequently face severe isolation, often traveling vast distances just to find specialized support. The PWS Roadshow is actively changing that narrative by establishing immediate, tight-knit local circles of permanent support right in these families’ backyards.

The recent stops proved to be profoundly life-changing for many attendees:

Bellingham, WA: The landmark launch brought together eight local families. In a profoundly moving moment, two attendees in their 30s met another individual living with PWS for the first time in their lives. The two instantly bonded, exchanged contact information, and are now best friends who talk every day.
Tri-Cities, WA: The tour successfully connected with multiple families who had never experienced a PWS support network before. In addition to building lifelong friendships, families dove deep into the latest research developments. Representatives from Soleno Therapeutics and PACE were on-site to provide details on a groundbreaking new treatment, allowing curious parents to speak directly with company experts and hear firsthand experiences from individuals already taking the medication.

“The connections made on this tour are absolutely priceless,” said Vonnie Sheadel, President of PWSA of Oregon and Washington. “Providing life-changing medical information is our goal, but seeing immediate, lifelong bonds form between these isolated families is the true success of the PWS Roadshow. We are building a permanent village of families and the providers who serve them across the Pacific Northwest.”

Following Bend, the summer tour will continue its outreach across the Pacific Northwest with subsequent stops planned for Spokane, Medford, Albany, and Olympia. Details and updates can be found on the events page at pwsa-or-wa.org.

This story is based on submitted information and has not been verified by our news team.