WILLIAMSPORT, Pa. — Carlee Weber struggles with everyday, normal tasks. She has been using a wheelchair since she was four years old after being diagnosed with Spinal Muscular Atrophy at the age of two.
"It has greatly impacted my life but not in a bad way; I think it has changed my perspective on a lot of things, and it's given me a unique purpose in life too," said Carlee Weber, Rare Disease Advocate.
Spinal Muscular Atrophy is a progressive muscular disease that weakens muscles over time. There is no cure for the disease, and the first treatment was only approved in 2016. Two additional treatments were approved in 2018 and 2020. Carlee takes an oral prescription medication called Evrysdi to treat SMA.
"I have been on treatment since 2018, and that has slowed the progression of my disease, and I've even gained some strength back, which has been really amazing, but I still require help with all of my daily activities, said Weber.
This disease doesn't prevent Carlee from being productive. She recently graduated from Penn State University in December with a degree in Advertising and Public Relations. Although she finished college in three years, she dealt with accessibility issues while living on campus.
"They made more housing accessible there, and I realized that was the passion that I had; I love advocating, and I love seeing the change come to life and seeing what is possible for people like me," said Weber.
Carlee shares what Rare Disease Day means to her.
"It helps bring awareness to the lives of people with rare diseases and that is what leads to change in society, I mean—we live great lives, and that's what we're celebrating but there's also things that could be improved upon and that's what we're educating people about today."
Carlee is currently looking to attend Law School at Drexel University in the fall.