JSRDF Blog

Connecting families with insights and love

12.11.17

$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
10.26.17

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
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