SWARTHMORE, Pa. (KYW Newsradio) \u2014 Around 2,500 people in the Philadelphia area live with a rare, incurable disease that isn\u2019t often talked about, but one local mom is rallying the community to raise awareness.<\/p>\n
Kayla Amoroso\u2019s 17-year-old daughter, as well as her son, live with Charcot-Marie-Tooth disease, or CMT \u2014 a hereditary disease that damages the nerves outside the brain and spinal cord.<\/p>\n
CMT isn\u2019t a terminal disease, but it is painful. It can lead to foot deformities, difficulty walking, and sensory loss.<\/p>\n
\u201cWhen we got the diagnosis, it was like, \u2018Okay, this is life-altering,\u2019\u201d Amoroso recounted. \u201cEven though it\u2019s not terminal, it\u2019s an everyday challenge.\u201d<\/p>\n
Her daughter was diagnosed when she was 12 years old. <\/p>\n
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.<\/p>\n
She said that while walking is hard for people with CMT, the goal of the event is to bring the community together.<\/p>\n
The walk will be a roughly quarter-mile loop and will be followed by a lunch and raffle.<\/p>\n
\u201cIt\u2019s a way to get the community together\u2026 and focus on the cause,\u201d Amoroso said. \u201cIf walking is something you struggle with, don\u2019t worry \u2014 there\u2019s plenty of people that are there that can walk for you.\u201d <\/p>\n