JSRDF Blog

Connecting families with insights and love

07.13.17

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
07.11.17

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
05.26.17

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
04.14.17

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 […]

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03.31.17

We Honor Dr. Poretti

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, 30 book chapters, delivered over 130 presentations at different conferences and consortia, and was invited to be a peer-review scholar with 25 journals. To say this was exemplary scientific, […]

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