Connecting families with insights and love


“I am Isabella” – A School Team Tool

  It’s August, and the excitement, anticipation, and, yes, fear of the back-to-school rituals are palpable across neighborhoods. No matter what your child’s actual school start date is, the moments of preparation leading up to that day have become an annual tradition for most families with school-age children. It’s fun, it’s hectic, and our kids […]

Read Categories: Tools

New JSRDF Executive & Board Member Election Process

Incoming President Larry Munger, and outgoing Past President Stephen Mack, share some important updates to the JSRDF Executive and Board Member election process. Please take a moment to watch each video for new information and exciting announcements. Thank you for being part of the JSRDF community!

Read Categories: JSRDF Update

Reflections from Board Members Departing in 2017

Every two years there is a shift in leadership here at the Joubert Syndrome and Related Disorders Foundation. New members are elected to the Board of Directors, and we say thank you to the wonderful people who have served two terms and are now cycling off of the team. As we prepare to announce new […]

Read Categories: JSRDF Update

Sneak Peek at the 2017 JSRDF Conference!

  The 2017 Joubert Syndrome & Related Disorders Foundation Family and Medical Conference is fast approaching! It’s happening July 19th-22nd in beautiful Phoenix, Arizona. Conference co-chair Jenni Swenson offers us a peek into some of the wonderful activities and agenda items in store for participants.  As we approach these last few weeks leading up to […]

Read Categories: Events, JSRDF Update

The Race for Rare Virtual 5K

The 1st Annual Race for Rare Virtual 5k is coming this fall! Co-organizers Meghann Grace and Jenni Swenson have been hard at work getting the logistics for this exciting fundraising event in order. I recently spoke with Meghann who filled me in on the details. Meghann is a proud mother of three, and an advocate for […]

Read Categories: Events