Meet the JSRDF Board! Fundraising Committee - Joubert Syndrome & Related Disorders Foundation
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This blog series highlights the JSRDF Board members and the committees they serve on. The JSRDF is a 100% volunteer-run nonprofit. Through the dedication of our hardworking volunteers, we are able to provide CARE: Connection, Awareness, Research, and Education to the Joubert Syndrome community. If you are interested in becoming a board member, please review the guidelines and submit an application today.

In this second post, we will focus on the Fundraising Committee!  What does the Fundraising Committee do?

The Fundraising Committee coordinates all of the fundraising activities for JSRDF.  This includes our two major initiatives each year: the virtual Race for Rare in June and the 31K in 31 Days fundraiser in October during Joubert Syndrome awareness month.


Meghann Rutledge Meghann Rutledge

Peaster, TX
Mother of Hayden, 11 (non-JS); Hunter, 7 (non-JS); Hensley, 3 (JS)
Board Member since July of 2017

A product I’d recommend to JS families: Baby Delight Go with Me chair. They are great for outdoors, and we keep ours in the car as an on the go high chair.  Also, a supportive baby/toddler carrier is a must.

What gets me through tough days: Praying, worship music, my husband, hugs from my kids & candy.

Parenting tips and tricks: Don’t be afraid to fire a doctor!

Hobbies: Crafting, reading & being outdoors

Favorite TV show: I Love Lucy

I know all the words to this song: Every country song written in the 90s

Something not many people know about me: I was on court TV before.  I WON!


Jennifer GrabruckJennifer Grabruck

Grosse Pointe Farms, MI
Mother of Madeleine, 11 (non-JS); Olivia, 8 (JS)
Board Member since July of 2017

Why I joined the Board: Awareness for those with special needs, Joubert Syndrome in particular, has been an interwoven part of my daily life since my daughter’s diagnoses. Understanding how her brain and body may or may not work is something that I’m very interested in and have an integral feeling to help others understand what that means. I felt that by joining the board, I would be able to help spread awareness and support those affected by JS on a broader level.

 

Website or app JS families might find useful: Curious World

What helps me get through tough days: Taking a moment to stop and reflect why my child is acting the way she does. This helps me best when I can steal a moment ALONE. I might have to tell my kids that I am walking away for a few moments or that I am not going to talk to them for a moment. Even just a few minutes can help me calm and regroup.

Parenting tips and tricks: Share doctor appointments! I take Olivia to some of our doctors and my husband takes her to others. Trying to take her to visit all 9 doctors regularly while working full-time is near impossible! Talk to each other about the “highs” and “lows” and any feelings you may have as they happen. It helps to just talk about what’s going on. It’s ok to be happy AND sad!!!

Hobbies: Running, baking, crafting, or going for a family walk.

I know all the words to this song: Hello by Adele. It’s Olivia’s FAVORITE song and she too knows all the words so of course, I have to too!

Something not many people know about me: I can remember places I visited as a kid based on what we had to eat!


Interested in joining the JSRDF Board of Directors? The call for applications is now open! Find more details and a link to the application here: Join the Board of Directors