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 post, we will focus on the Communication Committee!
The Communication Committee works to convey information to the broader Joubert Syndrome community. They update the website, write the blogs, post to social media, and support the goals of the other committees.
Mother of Coltrane, 6 (JS)
Board Member since March 2016
Why I joined the Board: As a seasoned communication specialist, I wanted to use my skills to help raise awareness for Joubert Syndrome, and ensure that every JS affected family is aware of our foundation and invited to join our supportive community.
Favorite conference memory: Thinking of the dance party at the 2013 conference in Minneapolis always warms my heart. All those smiles and amazing dance moves were so inspiring! Seeing so many thriving children with Joubert Syndrome gave me such hope for my son who was only 8 months old at the time.
Product I’d recommend to JS families: The Honey Bear drinking cup, and the Arc Z-Vibe oral motor tool
Website or app JS families might find useful: Endless Alphabet is a wonderful app for preschoolers that works on fine motor skills while teaching the alphabet. The graphics are very cute and funny.
What helps get me through tough days: The JS Support Group on Facebook is a lifesaver. Taking some time to myself to see a movie, talk to a friend, or work on a creative project can also be helpful when I’m feeling overwhelmed. Sometimes I just need to put myself to bed early and remind myself that tomorrow is a new day.
Parenting tips and tricks: For kids that have trouble with transitions, try creating a visual schedule and also using timers. This approach has worked well for my son. If I say, “You have 5 minutes more of iPad time,” when the timer goes off he will amazingly put it away without a fight.
Hobbies: Sewing, art journaling, playing the ukulele. As a family, we enjoy going on bike rides, we take our son out in a Duet Wheelchair Tandem Bike.
I know all the words to this song: I know a lot of songs! As a bit of a musical theatre nerd, there are numerous entire scores that I could sing from start to finish.
Something not many people know about me: In a past life, I wrote/ran/edited a successful food blog.
Rocky River, Ohio
Father of Kate, 6 (JS); Charlie, 6 (non-JS)
Board Member since July of 2017
Why I joined the Board: Attending my first conference in 2015 was an unforgettable experience. So when I learned that the foundation was looking for volunteers, I signed up without a second thought. Why not do something to help other kids like my daughter Kate? And it seemed like fun – finally, something to think about outside of my standard work/family routine!
Product I’d recommend to JS families: Wireless doorbell – attach the button to your kid’s bed and put the bell in a drawer in your bedroom. Now they don’t have to scream when they wake up!
Website or app JS families may find useful: Connecting for Kids podcasts – medical speakers/experts focused on issues related to kids with disabilities.
Parenting tips and tricks: For therapy, I create obstacle courses using furniture and toys. I weave in physical therapy, occupational therapy, speech therapy (for instance, one obstacle might involve saying something with her talker) and academic challenges. And I create a more difficult version for Charlie. The kids love it. Probably because they get pieces of candy after every obstacle!
Hobbies: I need more of these! Reading (news and nonfiction), traveling (without kids!), playing chess and nerdy board games, watching nerdy super hero movies, listening to podcasts and rock music made between 1965 and 2009 (when guitars were still a thing)
Favorite musical artist: Pearl Jam, Led Zeppelin, Metallica, Foo Fighters, Ben Folds, Lorde, Macklemore (don’t make fun)
I know all the words to this song: Every early ’90s rap song (Bust a Move, Ice Ice Baby, etc.).
Something not many people know about me: I can turn my feet backward.
Fort Worth, TX
Mother of Blair, 11 (non-JS); Lucas, 6 (JS)
Board Member since July of 2017
Why I joined the Board: Luke has changed me for the better. Through him, I have become more cognizant of the differences of others and, hopefully, more accepting of others as well. I think that the more that others have exposure to diversity, the more they understand it. That is what I hope to accomplish by lending my skills to the foundation.
Favorite conference memory: We haven’t been able to attend a conference yet! I will say that the first time I ever met another JS parent in person was at the JSRDF board retreat in September of 2017. I saw Meghann Rutledge and recognized her on the airport shuttle. I came on WAY too strong, and I think I completely freaked her out. But I was so excited to meet another JS parent for the first time! Really that entire weekend was life-giving for me.
Product I’d recommend to JS families: I think the product we have used most consistently and for the longest time is Munchkin straw cups! Luke tends to choke, and the straw slows the flow of liquid. We have probably used these for 5 years! Also, we love these popsicle/ice cream cone holders.
Hobbies: I love to read, usually historical fiction. I like to listen to faith-based podcasts. Traveling, and making it to a beach as often as possible.
I know all the words to this song: Where Soul Meets Body by Death Cab for Cutie
Something not many people know about me: My grandfather was on a Navy destroyer at Normandy on D-Day, and I got to interview him as part of the State Bar of Texas Veterans History Project. The transcript and an audio recording of our interview is in the Library of Congress. No matter what I accomplish in life, this will always be one of the best: preserving his memories for generations to come.
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