Better Together: Highlights from the 2019 JSRDF Conference - Joubert Syndrome & Related Disorders Foundation
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Clearly, we are better together.

A record 575 people from 12 countries registered for the 2019 Joubert Syndrome Family and Scientific Conference, which took place in downtown Baltimore from July 24-27.

Attendees went home with more knowledge about Joubert Syndrome and more friends who can relate to the daily challenges they face.

But if you couldn’t make it – or even if you just want to relive a few conference memories – keep reading. Here are just a few highlights from this year’s conference, starting with one that might appeal to those who couldn’t attend:

You can now watch parts of the conference online.

A few sessions were recorded and posted to the Joubert Syndrome and Related Disorders Foundation Facebook page. They include a panel discussion featuring two adults with JS, Andrew Olson and Henry Nalker, sessions on Whole Food-Based Liquid Nutrition and Full Spectrum Cannabis Oils, a primer on how to fundraise for the foundation, and a recording of the foundation’s general meeting.

Though we aren’t able to record the research-related sessions, the foundation did record short video interviews with several researchers who spoke at the conference. Those will be made available online soon.

Baltimore’s Inner Harbor.

The Hyatt Regency hotel offered stunning views of the most beautiful part of downtown Baltimore – from both the atrium AND the glass elevator. But the area also was loaded with things to do. For instance, many people at the conference found time to visit Baltimore’s National Aquarium, which is regularly ranked as one of the best in the country. And there were plenty of options nearby for …


Moms night and dads night are always conference highlights. And we have photo evidence to prove it.

But those weren’t the only gatherings. For instance, adults with Joubert Syndrome held their own gathering on Friday night. And let’s not forget the Saturday night dance, which was, as always, off the hook.

The JS experts.

First, we love their work, much of which was presented at the conference. They also collected samples, consulted with JS families one-on-one and had at least a little bit of fun, judging by the picture below. It was taken during a session where a panel of scientific JS all-stars presented updated recommendations for how doctors should evaluate and treat Joubert Syndrome patients.

And, finally, the penguins.

At one point real penguins from the Maryland Zoo visited the hotel pool. The penguin in the picture below wasn’t one of the real ones but was similarly delightful.

Didn’t see your favorite memory on this list? Perhaps you can find it on this page, which includes hundreds of photos from the conference.

We hope to make some new memories with you two years from now. See you in Seattle in 2021!

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