Connecting families with insights and love


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┬áthe details. Meghann is a proud mother of three, and an advocate for […]

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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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Welcome to the JSRDF Blog!

Hello and welcome! We are extremely excited to launch our new blog. Our overall goal for this space is to connect you, and our community, with any information that we think may be beneficial. There will be articles about what is going on with the Joubert Syndrome Foundation, new or existing published articles on JS, […]

Read Categories: JSRDF Update