October is Joubert Syndrome Awareness Month — a time to acknowledge the challenges faced by those affected by Joubert syndrome and to celebrate the many magnificent individuals that rise to those challenges each day with an incredible amount of grace.
Throughout the month, I encourage you to share your journey with Joubert syndrome within the JS community as well as with your extended network. Take time to educate your friends, family, neighbors and doctors on what Joubert syndrome is. You can start by adding this Facebook frame to your profile, by handing out JSRDF Intro Cards or pointing them to resources on our website, jsrdf.org.
This month the Joubert Syndrome and Related Disorders Foundation also will host its annual board retreat in St. Louis, MO. There, our board of directors will be working on a strategic plan designed to help us set goals for the next year — and beyond.
We’ll be joined by two new board members: Sarah Borders and Kristin Chacko. Both ladies come with great energy and backgrounds that will provide a ton of value to the board. They replaced two cherished members who had served since 2017: Thank you Jennifer Grabruck and Meghann Rutledge for your dedication to the JSRDF!
As you may know, we are marching right into a conference year, in 2022. We are excited to be heading to Seattle, WA, the backyard to Dan Doherty and his team at the University of Washington Hindbrain Malformation Research Program! The conference committee just recently returned from a site visit to ensure that all space needs and programming are accounted for when our families arrive in Seattle next summer. The conference is scheduled to take place from Wednesday, July 20, through Saturday, July 23. Be sure to save those dates! This conference is bound to be the best one yet! Registration won’t open until April 2022, but to learn more about the conference click here.
Finally, I’d like to take a minute to thank every single person who has volunteered either on the board of directors or as a committee member over the past year. This pandemic has not slowed us down one bit! The Family Support Committee continues to review and provide grants, circumstantial support and bereavement support to families in need. I’m not sure where we’d be without the Communications Committee keeping us informed and entertained via multiple channels: newsletters, social media posts, blogs and other content on our website. The Fundraising Committee has now completed the fifth successful Race for Rare and is responsible for continued growth in donations year over year. They are currently working to figure out how we can revamp our fundraising strategy to be more sustainable and scalable when the world throws speed bumps our way. Last, but certainly not least, the Conference Committee. It’s been a weird time for this group of ladies with the conference being pushed back to 2022, building a hybrid meeting, and the downtime that Covid had inevitably caused, but they have shown up and will deliver an amazing event next summer!
Most importantly, a big thank you goes out to you, for supporting the foundation and the people affected by Joubert syndrome in your lives. If you’re new to the community, introduce yourself in our Joubert Syndrome Support group on Facebook. If you’ve been here a while, give us an update!
See you in Seattle!
Jenni Swenson
JSRDF President
