Research Updates

Our CAMSAP1 Families

Meet Landon

“Hello everybody, my name is Landon! In 2018, my family found out that both copies of my CAMSAP1 gene were mutated. I love being with my family and have fun doing many things with them. Skating and sledding in the winter, swimming and swinging when it’s warm, and taking strolls around the house with the help of my gait trainer, Firefly UpSee, and stander are just a few of my favorite things to do. I love to eat BBQ, steak, and dessert, but my food has to be pureed.

After a long day, it’s on to bath time, and I get a kick out of making my parents laugh when I SQUEAL in excitement just before I plop into the tub! I giggle uncontrollably at fart sounds…if we’re being honest, WHO DOESN’T! Snuggle time with mom is the best, but chilling with dad isn’t all that bad either.”

Meet “Newt”

“Hi everyone! My name is Dracarys, but you can also call me by my nickname, Newt. It was discovered that I have two separate mutations of the gene named CAMSAP1. Singing and dancing with my nana are just a few of my favorite pastimes, and I absolutely LOVE relaxing during bath time! I also enjoy spending time with my dad, and he makes me laugh a lot!

I like to change positions frequently, but I enjoy being held and snuggled the best! It is hard for me to communicate how I feel, but my family and I are learning and navigating through each day together.”

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