SWARTHMORE, Pa. (KYW Newsradio) — Around 2,500 people in the Philadelphia area live with a rare, incurable disease that isn’t often talked about, but one local mom is rallying the community to raise awareness.
Kayla Amoroso’s 17-year-old daughter, as well as her son, live with Charcot-Marie-Tooth disease, or CMT — a hereditary disease that damages the nerves outside the brain and spinal cord.
CMT isn’t a terminal disease, but it is painful. It can lead to foot deformities, difficulty walking, and sensory loss.
“When we got the diagnosis, it was like, ‘Okay, this is life-altering,’” Amoroso recounted. “Even though it’s not terminal, it’s an everyday challenge.”
Her daughter was diagnosed when she was 12 years old.
Now, Amoroso has teamed up with the Charcot-Marie-Tooth Association, which funds research for treatments and a cure. They plan to host a walk at Nelson Hall in Swarthmore on Oct. 24.
She said that while walking is hard for people with CMT, the goal of the event is to bring the community together.
The walk will be a roughly quarter-mile loop and will be followed by a lunch and raffle.
“It’s a way to get the community together… and focus on the cause,” Amoroso said. “If walking is something you struggle with, don’t worry — there’s plenty of people that are there that can walk for you.”
Event and registration info is available on CMTA’s website.
A walk to raise awareness for Charcot-Marie-Tooth disease will take place in Swarthmore on Oct. 24
A walk to raise awareness for Charcot-Marie-Tooth disease will take place in Swarthmore on Oct. 24
