**Alyssa passed away on November 7th, 2022. Below is her story in her own words.** In the fall of 2017, I noticed that my left toe would drag when I was running. At first I assumed it was a pinched nerve, and with some exercise and stretching I would be back to...
For several years, I kept my genetic results as a C9orf72 gene carrier a secret. The only people other than my doctor who knew were my husband, my brother, and my parents. I asked all of them to keep my news quiet until I told my kids three years later, when they were...
On my way home from his memorial I started to notice foot drop. In June 2019 my dad died from ALS. He told us, his children, that it was not genetic and we don’t need to worry. On my way home from his memorial I started to notice foot drop. Two and a half years...
This is a picture of my family with my dad who died 6 month after this picture was taken of ALS. This is a picture of my family with my dad who died 6 month after this picture was taken of ALS. Lo and behold I would learn that I had the C9orf72 gene that most likely...
I earned my BA in liberal studies in 2014, and in 2015 I started to take a state test, but started to fall. I also could not hold the steering wheel of the car and had to stop driving. My name is Renee Rizzo and I live in Lancaster, California. I earned my BA in...
