Hope is on the horizon for JdVS families.
Building a community. Spreading awareness. Supporting research. Uplifting families.
Our Mission
Raising Hope, Together.
A hub for research, support, and hope.
The Jansen de Vries Syndrome Foundation is a nonprofit organization created to provide support and a sense of community to families touched by a JdVS diagnosis.
We are focused on education, practical resources, and stronger connections between families, researchers, and medical professionals. Through fundraising and grant efforts, we also work to expand research into the PPM1D mutation and future therapies.
What We Do
Support newly diagnosed families.
Share trusted resources for families and clinicians.
Fund and encourage research.
Raise awareness so more families can find answers sooner.
Support
By uniting families and sharing stories, we help newly diagnosed families connect with others and navigate unfamiliar territory together.
Resources
We connect families and providers with tools, guidance, and examples of what has helped individuals with JdVS thrive.
Research
Fundraising and partnerships help researchers better understand PPM1D and explore treatments that can improve quality of life.
Advocacy
We work to put JdVS on the map by increasing awareness, strengthening community, and helping more families get connected.
Featured Pathways
Start with the section that matches where you are right now.
Learn About JdVS
Understand the syndrome, the PPM1D gene, and common questions families ask early on.
Explore Resources
Find materials for patients, caregivers, and medical professionals in one evolving library.
Join the Community
Connect with other families, read stories, and stay close to the growing JdVS network.
Stories That Inspire
Family stories are a powerful reminder that support, progress, and joy can grow alongside diagnosis.
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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