Hope is on the horizon for JdVS families.

Building community. Spreading awareness.  Supporting research. Uplifting families.

Boy smiling with blue glasses.
Little girl in hat.
Teen in a swimming pool
Little girl with huge smile and clouds.

Our Priorities

We aim to create a meaningful community by focusing on these key areas to increase awareness and understanding of Jansen de Vries Syndrome.


By uniting families and sharing stories we support newly diagnosed families looking to connect with others. Creating community together, we will look to each others’ shared experiences to help us navigate this uncharted territory.


Connect with providers who have treated JdVS individuals, learn what works and share success stories. Hear from a variety of specialists who have a unique understanding of how JdVS individuals learn best.


Through fundraising and grant efforts, we will work to provide researchers the resources necessary to gain a better understanding of the PPM1D mutation and develop potential treatments and therapies to ultimately improve the lives of those living with this rare genetic condition.


Putting Jansen de Vries Syndrome on the map. Connecting researchers, uniting families and spreading the word we work tirelessly to increase awareness about JdVS.

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Online Communities

Together climbing mountains.

Stories that inspire

You are not alone - learn more about the families and children currently living with Jansen de Vries Syndrome.

Meet Daniel

By YokoCo | January 9, 2021

About Daniel Daniel is 11 years old. He lives with his dad, mom, and older sister. He loves to see his grandmother Lena every day and has many family members in South Africa and Australia. Early Years Daniel was born at term after an uncomplicated pregnancy. Still, his parents and the medical team knew right…

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Meet Wells

By Rachel Horne | February 19, 2021

About 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.   At twelve weeks, Wells underwent surgery for three hernias.  Around three months, Wells was diagnosed with laryngomalacia (underdeveloped vocal cords) which…

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Meet Noah

By Rachel Horne | February 19, 2021

Noah’s Story Over Noah’s first 4.5 months his mother Nicole spent countless hours and sleepless nights contemplating the cause of the myriad of symptoms that he was having. The twins were born at 37 weeks and 2 days and Noah did not require any time in the NICU. Over the next several weeks to months…

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Meet Ryan

By Kara Kilroy | February 24, 2021

Meet Ryan and the Stearn Family Ryan’s Race for Change Article About Ryan’s Path to Diagnosis Ryan’s School Community Showing Support

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