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 hearts 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 to 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 its 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. Whether you have a specific committee you want to join or you’re still undecided, fill out the volunteer intake form and we will reach out to help you find the best use for your talents.
Reach out here: firstname.lastname@example.org
- Conference Committee
The Conference Committee coordinates the biennial conference. They scout locations, price hotels, find informative speakers, and put together fantastic programs!
Chair: Denise Mack
- Communications Committee
The Communications Committee organizes the foundation’s communication efforts. They update the website, write blog posts and newsletters, manage social media, and support the goals of the other committees.
Co-Chairs: Kristin Chacko & Yosef Travis
- Family Support Committee
The Family Support Committee handles our grants and scholarships program, sends care packages to families experiencing difficult times, and gathers the educational and support resources available through the JSRDF website.
Chair: Sarah Borders
- Fundraising Committee
The Fundraising Committee coordinates all fundraising activities, including the Race for Rare (a virtual 5K) and our 31K in 31 Days fundraiser in October during Joubert Syndrome Awareness Month.
Chair: Cassie Meiers