From our president: It's time to celebrate JS Awareness Month - Joubert Syndrome & Related Disorders Foundation
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Jenni Swenson, President-Elect, JSRDF

On behalf of the Joubert Syndrome and Related Disorders Foundation (JSRDF), I would like to welcome you to our favorite time of the year!  You may be thinking, “Pumpkin spice season?” But no! October is Joubert Syndrome Awareness Month!  Whether this is your first time celebrating JS Awareness Month, or you have been working to bring awareness for 25 years, we are happy that you are part of our community!

We have many exciting things planned throughout the month. For instance, our Fundraising Committee has been working hard to build Awareness Kits that you can order online. They contain brochures, pens, bracelets, pins and other JSRDF-branded items that you can distribute to anyone who should know more about Joubert Syndrome.

Today also marks the first day of the foundation’s third annual $31k in 31 Days fundraising campaign!  The goal for 2019 is just as the name reads, to raise $31,000 during the 31 days of October.  The past two years we have been successful in reaching the $31,000 goal. Given the excitement flowing over from our recent conference in Baltimore and the added ease of giving through our BRAND NEW Text-to-Give platform, I am confident that we will blow the $31k goal out of the water!

To try out that new Text-to-Give platform, text Hope31 to 41444.

But if you want to go a step further and create your own fundraiser, visit the link below and click the “Become a Fundraiser” button to create your personal fundraising page.

Create My Fundraising Page for $31k in 31 Days by clicking here! 

JS Awareness Month is also a good time to get more involved with the foundation in other ways. If you’re interested in volunteering, visit tinyurl.com/JSRDFvolunteer and tell us a little bit about yourself. And if you have any questions, ask a member of our board of directors!

Speaking of the board, we’ll be meeting in Chicago later this month to plan out our goals for the upcoming year. We’ll be sharing information about the retreat and many other topics on the JSRDF Facebook, Twitter and Instagram accounts throughout October. We have a few surprises in store, so stay tuned!

With hope,

Jenni Swenson
JSRDF President

  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…