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


Family Support 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 - POSITIONS OPEN

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?

Do you have WordPress experience?

Would you like to help out with marketing special events?

Contact Us


Fundraising Committee - POSITIONS OPEN

Are you interested in raising funds for the JSRDF?

Are you interested in planning future foundation fundraising events?

Are you interested in working to keep donors engaged?

Contact us