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Help us on our mission of finding a cure for INAD/PLAN. Sage’s family is fundraising to help us bring our gene therapy program to a clinical trial:

Sage P.

3 Years Old | Rhode Island, USA

About This Superstar

Age of Diagnosis
Just days before her second birthday

Finding A Diagnosis:
She was diagnosed via whole genome exome sequencing after many more and more worrisome symptoms, some requiring hospital stays and surgical intervention

How INAD Has Impacted Their Life
In every way possible. She has lost almost all of her words, but can still communicate with us somewhat. She can still crawl but gets very tired. She is fed primarily via GTube due to weakness with chewing.

Favorite Activities
Spending time with her brother and cousins, being in the water, going for stroller rides outside, patting her dog and cats, and anything sensory.

Favorite Foods
Chocolate! And yogurt.

Favorite Television/Movie Character
Cocomelon’s “Wheels on the Bus”

Favorite Books
Any colorful pop-up book!

What They Would Like the World to Know About Their Experience Living with INAD
We are doing our best to give her a (far too) short but very sweet life for the time we have her with us. This disease is absolutely devastating to the child, and all of their family.

Special Fun Facts
Sage has a 5 year old brother who she loves to play with. We have a dog, Maxine, and two cats, Murry and Arwen, who she likes to pet and crawl after. Both of her parents are doctors who are working to bring more recognition of INAD to the medical community.

To share your child’s story with us fill out our Child Stories Form