KIF1A

A note from Kiara's family


Kiara is definitely a true Mainer and loves the outdoors. She always wants to be outside, likes to swim, play with her baby brother and older step brother. Kiara is a Grandpa's girl (Papa as Kiara says) and loves to play trucks, just like her dad. Kiara is a true leader already. She has produced the most #WeNeedAMouse videos on the internet and is responsible for raising funds that are vital to treating other children with genetic disorders. 


Kiara also loves camping. KIF1A kids have lots of trouble walking, especially on uneven ground, but this kindergartner is tougher than any grizzly bear, so a little hill won't stop her. A five year veteran of rare and undiagnosed disease, last month Kiara was finally diagnosed. Kiara has KIF1A-related disorder and is leading the charge to get all of the KIF1A kids a mouse model so scientists can get to work. With superheroes like Kiara, discovery is just around the corner. The girl rocks.​

 This week's KIF1A superhero is Kiara!

Superhero of the Week

KIARA

Hometown: Farmington, ME

Age: 6 years

Monster Truck Driver

Total ​Superhero​​

Every week a family member tells a story and shares a picture.