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 third post, we will focus on the Family Support Committee!
The goal of the Family Support Committee is to serve the individuals and families affected by Joubert Syndrome. They provide support in a variety of ways: welcome packets to newly diagnosed families, birthday cards to affected individuals, and encouraging words to families going through hard times. When the unthinkable happens, they support families through the bereavement process.
Amanda Tulumalo
Amanda TulumaloLawrenceville, NJ
Mother of Devin, 20 (JS); Jaden, 15 (JS)
Board Member since July of 2015 (and previously from 2006-2011)
Favorite conference memory: My first conference in New Orleans in 2002 – meeting Lee, an individual affected by JS. He gave me Mardi Gras beads to wear, and we became instant friends!
Website or app JS families might find useful: Wrightslaw.com, for American families to help understand the law regarding special education, IEPs, and ARDs.
Product I’d recommend to JS families: Rifton Pacer gait trainer
Parenting tips and tricks: Always err on the side of love and patience.
Hobbies: Playing piano, singing, scrapbooking, planning Disney trips.
Favorite TV show: Speechless
Favorite musical artist: Billy Joel
Something not many people know about me: I am distantly related to Patrick Swayze.
Ann Pence
Ann PenceCedar Lake, IN
Mother of Xavier, 20 (JS); Troy, 11 (non-JS); Brandon, 9 (Autistic); Emma, 7 (non-JS); Jace, 4 (non-JS)
Board Member since July of 2014
Why I joined the Board: I wanted to be a part of an amazing team that helped me through some tough years. I love seeing the direction the board is taking the foundation.
Favorite conference memory: Our first conference was the first time we felt like we belonged. The instant connections we made with families; we are still friends. Also not having to explain why he wasn’t hitting milestones.
Parenting tips and tricks: Follow through with what you say. Listen to everyone’s advice, but only do what you think best.
Hobbies: Crafts, movies, working out.
Favorite TV show: Once Upon a Time
Favorite musical artist: Too many to say just one. Red Hot Chili Peppers, Metallica, NIN, Ramones…
Melissa Fields
Melissa FieldsNoblesville, IN
Mother of Cady, 15 (non-JS); Austin, 12 (JS)
Board Member since July of 2017
Why I joined the Board: It was time for me to give back! I watched from the sidelines for many years as our amazing board does amazing things for our community. When Austin was little, I felt I was too busy with his needs to give the time needed. Now that he’s older, I feel like my “mom experience” has given me extra ammo to help support our JS family.
Favorite conference memory: Florida 2011. Austin was four and a half. He used his walker fairly independently and could get where he wanted to go pretty well. We flew to Florida from Indy with his walker and stroller and 423 suitcases. The last night of the conference, he decided he didn’t need his walker anymore. He wanted to get around like the ‘big kids’ and took off. I chased him around the dance floor as he proudly showed off his new trick!!
What helps me get through tough days: Coffee, kids and Jesus.
Parenting tips and tricks: Schedules and routines are a must at my house!
Hobbies: Crafts, coloring, reading.
Something not many people know about me: I have crazy horrible sleep apnea and have named my CPAP ‘Sergio’. I imagine myself sleeping next to a Latin hottie every night!!
Scott MacLellan
Scott MacLellanOttawa, Ontario, Canada
Joubert Syndrome Affected Individual
Board Member since July of 2017
Why I joined the Board: I joined the board to be able to better advocate for other individuals with JS, especially older ones.
Favorite conference memory: Meeting so many other affected adults in Phoenix
Product I’d recommend to JS families: QuickSnap shoelace clips
Website or app JS families may find useful: My blog, http://rarewriter.blogspot.com/
What helps me get through tough days: I find social media is a big help when things get rough. Writing my thoughts down in a blog post, or being able to chat with other JS adults or parents via Facebook.
Hobbies: My hobbies include writing, public speaking, and reading (science fiction, fantasy, comic books mostly)
Favorite TV show: At the moment, The Walking Dead, The Blacklist, DC’s Flash and Legends of Tomorrow and The Big Bang Theory. All-time favourites still include ALF, Buffy the Vampire Slayer, and X-Files.
Favorite musical artist: I don’t really have one favourite. Pearl Jam, Bob Seger, and Hootie and the Blowfish rank pretty highly though.
