Pennsylvania
2 families represented
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.
Our Mission
Raising Hope, Together.
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.
Community Map
Help put the JdVS community on the map. Every household adds to the picture, and families who opt in can make it easier for others nearby to connect.
Family Registry
See where families are represented today
Private submissions still count toward the map. Public opt-ins can share a display name and contact details so nearby families have a way to connect.
2
Households pinned
1
States represented
1
Public contacts shared
The map is US-focused for this first release. We're still storing non-US submissions now so UK and Europe expansion has a head start.
Add Your Household
Share your place in the JdVS community
We keep your submitted contact details private unless you explicitly choose to share them publicly.
Stories That Inspire
Every family story helps another family feel seen, understood, and hopeful.
Meet Daniel
About Daniel Daniel is 15 years old. He lives with his dad, mom, and older sister. He loves seeing his grandmother Lena daily and has many family members in South Africa and Australia. Early Years Daniel was born at term after an uncomplicated pregnancy.
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Meet Wells
Wells was born at thirty seven weeks to his mother, Rachel. The pregnancy was mostly normal, except for excess amniotic fluid. Healthy at birth, he was discharged after two days in the hospital.
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Meet Uzziah
Uzziah and his family joined the JdVS community in 2019 after diagnosis by Dr. Cynthia Curry. Like many individuals with JdVS, he experienced delays in milestones, feeding issues, seizures, and short stature.
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Meet Ryan
Ryan's family has helped raise awareness by sharing his story, his path to diagnosis, and the support shown by his school community.
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Meet Noah
Noah's family spent months searching for answers before genetic testing identified JdVS. Their story reflects the uncertainty many families face before a diagnosis finally brings clarity.
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