Together climbing mountains.
Community makes the path lighter.
By uniting families and sharing stories, we help newly diagnosed families connect, learn, and feel less alone.
Online Communities
Creating community together, we look to each others' shared experiences to help us navigate this uncharted territory. Families in the JdVS community continue to offer support, encouragement, and practical insight for day-to-day life after diagnosis.
The foundation's social spaces are a strong starting point for newly diagnosed families, extended family members, and supporters who want to stay connected.
Stay Connected
Join the wider JdVS community, register with the foundation, and help families and researchers stay connected.
Connect Online
Meet other families, share milestones, and learn from people who understand the JdVS journey firsthand.
Family Registry
Community participation helps build stronger awareness and supports long-term research and advocacy efforts.
Join Us
Register with the foundation to stay informed about events, opportunities, and the growing network of JdVS families.
Stories That Inspire
Every family story helps another family feel seen, understood, and hopeful.
Meet Uzziah
Uzziah and his family joined the JdVS community in 2019 after his diagnosis by Dr. Cynthia Curry, a member of the JdVS Medical Advisory Board. Like many individuals with JdVS, he experienced delays in major milestones, feeding issues, seizures, and short stature.
With support from therapy services and strong family advocacy, Uzziah continues to make great progress and brings joy to the community.
Meet Ryan
Ryan and the Stearn family have helped raise awareness by sharing Ryan's path to diagnosis and the support shown by his school community.
Stories like Ryan's remind families that advocacy can grow from a diagnosis into meaningful local and national awareness.
Meet Noah
Noah's family spent months seeking answers before genetic testing identified JdVS. His diagnosis came after an exhausting season of feeding challenges, specialist visits, and uncertainty.
His story reflects the resilience so many families carry into this community and the relief that can come with finally having an answer.
