From our president: Get ready for a very special JS Awareness Month - Joubert Syndrome & Related Disorders Foundation
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Hello and welcome to the 2020 edition of Joubert Syndrome Awareness Month!

Jenni Swenson
Jenni Swenson, JSRDF President

October is always our favorite time of year, but this year it might just be just a tad more special.


Today, not only is the Joubert Syndrome and Related Disorders Foundation launching our annual $31k in 31 Days fundraiser (click here to create your fundraising page), but we’re also incredibly excited to launch the JSRDF Be Brave, Be Bold, Be You Grant Program.

The program will award grants to help JS families get through medical crisis situations and cover unexpected costs. Some grants also will be used to help individuals with JS reach their full potential. To learn more, visit the grant program home page, which is located under the “Support” tab at

This is a program we’ve really been looking forward to launching because it gets to the very reason why the foundation exists: To empower people with JS and their families with knowledge, support and hope.

So many of you are already doing so much to help us achieve that mission … which brings me to another reason why the 2020 edition of JS Awareness Month is so special.

Race for Rare takes place this Saturday, Oct. 3! Despite the fact that we had to push it back four months due to the coronavirus pandemic, more than 450 of you still registered to participate! It’s a virtual 5k, but participants won’t be on Zoom: They’ll be running, walking and rolling wherever they happen to be this Saturday.

Race for Rare blew its previous registration record out of the water, but our $31k in 31 Days fundraiser is still $31,000 away from its goal. Help us blow past that figure and secure the future of the foundation – visit to donate or to become a fundraiser!

One more thing: This month we’ll be releasing a few videos designed to raise awareness about Joubert syndrome and why the people affected by it are so special to us. And if you want to raise some awareness yourself, maybe start by adding this Facebook Frame to your profile picture.

That’s it for now. Have a wonderful October!

With hope,

Jenni Swenson
JSRDF President



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