Connecting families with insights and love


Stop ignoring your friends. It’s bad for your health.

By Chuck Soder Anyone else feel like they’re slowly turning into a hermit? Of course, even if you are, you may not have noticed. I didn’t truly grasp that it was happening to me until last year, when I read this column from The Boston Globe. I realized I had already started down the long […]

Read Categories: Perspective

$31k in 31 Days – Thanks & Recognition

By Jenni Swenson The month of October is now in our rearview mirrors and what an incredible month to reflect on as we head into 2018! For the first time, the JSRDF promoted the month of October as Joubert Syndrome Awareness Month and with that, the first ever foundation sponsored fundraising campaign; $31k in 31 […]

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

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 […]

Read Categories: Events, Fundraising, Race for Rare

$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

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