Executive Message - Joubert Syndrome Awareness Month 2018 Begins Today - Joubert Syndrome & Related Disorders Foundation
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JS Awareness Month - $31K in 31 Days learn more at tinyurl.com/31k31days

Hello JS community,

October is Joubert Syndrome Awareness month, and once again the Joubert Syndrome and Related Disorders Foundation is encouraging members of the JS community to help spread awareness and take part in our $31k in 31 Days fundraiser.

The goal of the fundraiser is just like it sounds: To raise at least $31,000 for the foundation during the 31 days of October – all while raising awareness about Joubert Syndrome.

An easy way to participate is to simply ask your family and friends to make a donation through the $31k in 31 Days web page. Donations made in the name of a family affected by Joubert Syndrome can help that family earn free conference registration fees and hotel nights for the 2019 JSRDF Family and Scientific Conference, which will take place in Baltimore this July (click here for details).

But if you’d rather take a different route, we’ve got you covered. This month we’ll be highlighting a few different kinds of fundraisers to give you ideas on ways to raise money and information to help you turn those ideas into action.

And while I have your attention I’d like to update you on some of the things the JSRDF board has been working on lately. The board had a great meeting last week and continues to work hard to figure out the best ways we can support our families. Each of the board’s committees has been making substantial progress. The fundraising committee has had a record-breaking year. The family support committee has produced some wonderful materials to welcome new families and grieve with those that we lost this year. Communications has increased the foundation’s social media presence and will continue to update you on new things on the horizon. And the conference committee has been hard at work getting ready for our JSRDF Family and Scientific Conference in July. We look forward to getting together with our awesome community.

Thank you in advance for your continued support and helping spread awareness for the JS community. We look forward to seeing you at the conference in July.


Larry Munger

Larry Munger, President, JSRDF


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