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, Education, and Research to the Joubert Syndrome community. If you are interested in becoming a board member, please review the guidelines and submit an application today.
We’re kicking off the series with the Executive Committee! What does the Executive Committee do?
The executive committee serves as the board’s leadership team. It includes the president, the president-elect, the past president, and the treasurer. The executive committee is tasked with running board meetings, overseeing the board’s internal operations, managing the foundation’s finances and providing guidance to the broader board. In some cases, the committee can make decisions on behalf of the foundation.
Father of Leyla, 8 (JS) and Lucas, 5 (non-JS)
Board Member since July 2013
Why I joined the Board: We always want bigger and better things from the non-profits that we are passionate about and the only way to achieve that is to volunteer. Small organizations like ours need all the help they can get and this was a big topic during the general meeting at the 2011 JSRDF conference. I knew right away that I needed to get involved to support our amazing community and Leyla.
Favorite conference memory: The dance after the closing dinner at every conference hands down. It is such an amazing thing to see so many kids loving life and having an amazing time. It also celebrates a long, emotional, yet loving and fulfilling week. It is such a powerful moment that I always look forward to.
What helps get me through tough days: Knowing that there will also be good days. It’s a rollercoaster and sometimes you have to wait for the sick feeling to pass. Talking with other families is always great as well. Whether venting or talking about anything else it just brings comfort for me to talk with someone who knows exactly what you are going through.
Hobbies: woodworking, reading, BBQ, and board games
Favorite TV show: Friends
Favorite musical artist: Bob Seger
Something not many people know about me: I probably watched Big Trouble in Little China over 100 times in my childhood. “Wasn’t easy!”
Father of Peyton, 9 (JS), Ellie, 7 (non-JS), Kamryn, 5 (JS)
Board Member since July 2015
Why I joined the Board: To give back to our amazing community
Favorite conference memory: Seeing the smiles on the kids’ faces
A product I’d recommend: Cocoon swing
Website or app JS families might find useful: Injini app
What helps get me through tough days: Exercise and Faith that it will be better tomorrow
Hobbies: Learning and being outside
Favorite TV show: College Sports
I know all the words to this song: Crush by Dave Matthews Band
Something not many people know about me: I have lived in 14 different states and only one since I have been married.
Mother of Leyla, 8 (JS) and Lucas, 5 (non-JS)
Board Member since July 2017
Why I joined the Board: I joined the board after serving on the conference committee for 6 years and feeling the need to do more!
Favorite conference memory: It is really hard to pinpoint just one! Most recently, I would say that Mom’s Night Out in Phoenix was incredible. It was so great to see all these women who are under so much pressure all day, every day, be able to just sit back and enjoy the company of other moms who just get it and take some time to connect with this beautiful group of women.
What helps me get through tough times: Faith. Trusting that no matter how hard each day is, there is a bigger plan for us and for Leyla.
Parenting tips and tricks: Have patience and prepare your children for transitions!
Hobbies: Reading and shopping. . . maybe to a fault!
Favorite TV show: Law and Order: SVU
Favorite musical artist: This is a hard one for me; I have a diverse love of music and artists. From Michael Jackson to Missy Elliott, Old Dominion to Otis Redding, Poison to Paul Simon, Stevie Wonder to Sam Hunt, you get the idea.
I know all the words to this song: You’re the One that I Want from Grease!
Something not many people know about me: I have a special place in my heart for all things 80s!
Mother of Tyson, 12 (non-JS), Mia, 8 (JS), Colton, 6 (non-JS)
Board Member since July 2017
Why I joined the Board: To give back to the JS community and be the first to know of any new findings in the field.
Product I’d recommend to JS families: Cascade brand orthotics
Parenting tips and tricks: Make everything fun to avoid meltdowns, sing through a clothing change, make funny jokes during an unwanted bath, be silly to keep the good mood good. When it turns bad, if one more funny doesn’t stop it, walk away as long as it’s safe. Give them space to sort out their feelings. Don’t argue or repeatedly ask what’s wrong. It only escalates from there. Just give them time and maybe a really tight squeeze if it’s safe to do so.
Hobbies: Bike riding, yoga, hiking, art museums, snowboarding
Favorite TV show: At the moment. . . Handmaid’s Tale
Favorite musical artist: At the moment. . . Sylvan Esso
Something not many people know about me: I LOVE to dance. I have impromptu dance parties in the kitchen with my kids all the time.