Category: Events


Race for Rare 2017 Recap

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. Exactly 147 runners and walkers registered for the virtual 5K race – “virtual” because it didn’t take place at one particular location. Participants laced up wherever they happened to […]

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Looking back on the 2017 JSRDF Family & Scientific Conference

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 farewell to Phoenix – and point out just a few of the things that made this year’s conference so special. 1. It was huge. More than 500 people from […]

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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 […]

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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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