By Chuck Soder The 2017 Race for RARE raised roughly $10,000 for the Joubert Syndrome and Related Disorders Foundation – far more than organizers had anticipated.
October is here and as we head into fall, we are also heading into our first Joubert Syndrome Awareness month. For the first time this
I’ve been really excited since getting back from the Joubert Syndrome and Related Disorders Foundation board retreat in Kansas City. Excited … and just a
It’s been more than a month since the end of the conference, so we figured it was high time (way past high time, actually!) to say
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
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
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
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
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
Common knowledge undoubtedly proves that Dr. Andrea Poretti was a brilliant doctor, medical researcher, and scholarly author. According to several bios, he co-authored over 200 articles,
