2017 JSRDF Board Retreat - Joubert Syndrome & Related Disorders Foundation
Share this article:


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 little bit nervous.

Why? Because we have a lot of work to do.

On Friday, Sept. 22 – the first night of the two-day retreat – new board president Larry Munger made it clear that the foundation will ask a lot from its board members.

We discussed some of those expectations during the retreat. Here are just a few:

• Every board member will actively raise money for the foundation.

• Every board member also will volunteer their time and serve on at least one board committee.

• Those committees will set specific goals – and report on their progress toward those goals during each board conference call.

• There will be no hiding in the background on those calls. We will be talking to each other on video, and even lowly new members like me will occasionally be asked to give the report for their committee. So I better be on my game!

Board members on different committees split up to start setting those goals on Saturday during an all-day meeting moderated by Margaret Maat. Two hours later, representatives from all seven committees – brand awareness, communications, conference, family support, finance, fundraising and scientific – gave reports to the entire board. They rattled off all sorts of goals that could be achieved over the next two months. And the next two years.

If you happen to volunteer on one of those committees, you’ll get the chance to weigh in on those ideas on the next committee call. But even if you don’t, we’ll try to keep you up-to-date on what the foundation is doing through this website. At the retreat, we talked about how we want to be as transparent as possible about what we’re up to and the decisions we make. That’s why you’re reading about this on the JSRDF blog.

We won’t get into all the boring details – which is why I’m only going to briefly mention that we’ve started the exciting process of revamping the foundation’s Board Policy Manual! But the foundation was created to support you – so the least we can do is keep you informed.

Mosaic of photos from the 2017 Board Retreat

Chuck Soder JSRDF