Hi! My name is Susan and I was diagnosed with Charcot-Marie-Tooth/Hereditary neuropathy with liability to pressure palsies (HNPP) in 2024. That was a mouthful huh?

I used to work a Nurse Practitioner until I became unsteady with falling and lost the ability to even put on a necklace or fix my hair. I have had multiple surgeries and seen multiple speacialists. All they can offer is physical therapy, braces (AFO like you see me wearing), and neuropathy or pain medications that make you drowsy.

They are researching for a treatment and my prayer is there will be one soon because I unfortunately passed this on to my daughter. Help support a cure by donating or sharing this page. Thank you SO much!