JSRDF Blog

Connecting families with insights and love

10.01.17

$31k in 31 Days

  October is here and as we head into fall, we are also heading into our first Joubert Syndrome Awareness month. For the first time this year, the JSRDF will be launching the $31k in 31 Days Fundraiser to raise awareness and funds for the Joubert Syndrome community. Our goal is to raise $31,000 in […]

Read Categories: $31k in 31 Days, Fundraising, JS Awareness Month
09.28.17

2017 JSRDF Board Retreat

  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 […]

Read Categories: JSRDF Update
09.15.17

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 […]

Read Categories: Events
08.11.17

“I am Isabella” – A School Team Tool

  It’s August, and the excitement, anticipation, and, yes, fear of the back-to-school rituals are palpable across neighborhoods. No matter what your child’s actual school start date is, the moments of preparation leading up to that day have become an annual tradition for most families with school-age children. It’s fun, it’s hectic, and our kids […]

Read Categories: Tools
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