Helping people, changing lives.

In 1992, the Joubert Syndrome and Related Disorders Foundation (JSRDF) started as a group of mothers coming together around a kitchen table to create a better life for their children with JS.   They dedicated their time, money, and heart to help medical professionals better understand the signs of JS and create a framework of support for those families who would follow in their footsteps.  Without the generosity and selflessness of these women, the JSRDF would not be the national support organization it is today.

The JSRDF is looking for volunteers, like those first mothers, to assist with various tasks that are instrumental for the Foundation’s success.  The Foundation believes that establishing a strong volunteer base will help ensure that the Foundation continues to grow and expand to meet the needs of it’s members.  While we acknowledge that your lives are busy, we ask you to consider volunteering – whether it’s an hour a month, on a weekly basis or for a one-time project.

Numerous opportunities are currently available and include a variety of committees


Membership Committee

Do you want to help new families get connected with the JSRD family?

Do you lead or wish to start a local support group?

Do you want to increase the number of volunteers available to assist and promote the Foundation?

Contact Us

Communication Committee

Do you enjoy using social media (Facebook, Twitter) to connect with JSRD families and learn more about JSRD?

Are you interested in contributing to the newsletter?

Would you like to help out with special events?

Would you like to help with the biannual conference?

Contact Us


Scientific/Education Committee

Are you interested in research and scientific publications that relate to JSRD?

Would you like to assist with the JS LIFE project?

Are you interested in assisting/working with medical professionals who specialize in JSRD?

Do you want to create educational handouts for JSRD?

Contact Us

Operations/Finance Committee

Do you want to be involved with fundraising opportunities or campaigns?

Are you interested in increasing available donors to help financially support the Foundation?

Would you like to be involved with creating and selling JSRD merchandise?

Contact Us