The board of directors for the JSRDF serve two-year terms. This spring, the JSRDF sought out applicants for the board, reviewed the applications, and selected new members. At the biennial conference in July 2019, three new members joined the board. We’d like to introduce you to them!
Amy Ballock
San Ramon, California
Mother of Delaney, 8 (JS)
Conference Committee
Why I joined the board: I want to give back to the group that gives so much to me and my family, and I want to raise money for the JSRDF so we can do as much for the JSRDF community as possible!
Favorite conference memory: Watching all the families dance together at the final dance on Saturday makes my heart SO full. It’s a night filled with love and our kids get to feel super special for the whole night!
Website or app JS families might find useful: TouchChat – App for AAC devices:
What helps me get through tough days: I take time out for myself every week – even if it’s just a few visits to the gym or a pedicure, I do something for myself so I can reset and be present for Delaney and my husband.
Hobbies: Crafting, going to the gym (Orangetheory Fitness)
Favorite TV show: Grey’s Anatomy
Something not many people know about me: My first job was as a lifeguard at a local pool. I trained over the course of 4 years and became a professional lifeguard and competed in National Lifeguard Games and rescue events all around the country.
Michael Massa
Smithtown, NY
Father of Michael, 3 (JS)
Fundraising Committee
Why I joined the board: To help raise awareness for JS through funding and the advancement of research.
Favorite conference memory: 2017 Dance Party!!
Product I’d recommend to JS families:
For infants, I recommend the Boppy lounger.
For toddlers, I recommend a Mickey Mouse walker (see example).
Website or app JS families might find useful: Amazon Music or any music app (Michael loves music)
What helps me get through tough days: Working out and yoga
Parenting tips and tricks: Try not to compare your child’s development with any other child and remember that every child develops at their own pace.
Hobbies: Going to the gym, golf and softball
I know all the words to this song: Caribbean Queen by Billy Ocean
Cassie Meiers
Glendive, MT
Mother of Jaxton, 3 (JS); Ryler, 4 months (non-JS)
Fundraising Committee
Why I joined the board: I joined the board to help play an active role in raising awareness for Joubert Syndrome. My vision is to increase fundraising and promote donor retention.
Favorite conference memory: Seeing how capable our kids are.
Website or app JS families might find useful: I know there are a ton of calendar apps out there, but we use FamCal. It is very user friendly and others that help with your child’s care can have access to the app. We use it to enter therapies, daycare, and doctor’s appointments. We also use it to coordinate who is picking Jax up or getting him to his therapy sessions.
Parenting tips and tricks: We try very hard to treat Jax as any other three year old. He is held to the same behavioral standards and expectations. We talk Jax through what is going to be going on for the day and try to warn him prior to transitions. It seems to help with his behaviors and mood when we are consistent with this.
I know all the words to this song: Ice Ice Baby
