Victoria Purdum

Aug 10, 2024

5/2/22 I was diagnosed with ALS via a genetic test that showed a C9ORF72 mutation. My name is Victoria Purdum and I live in Maine. 5/2/22 I was diagnosed with ALS via a genetic test that showed a C9ORF72 mutation. My wife, Trudi Chase, is my caregiver. I have limb...

Edward Belair

Aug 10, 2024

I’m doing everything I can. I was a 70 years old in very good health. Very active. 8th July 2022 got bitten by a tick — bad rash but Lyme was negative. 1 month later I was unable to even walk my dog. It took until August/September of 2023 to get the...

Andrea Allen

Aug 10, 2024

Tianna passed away on April 5, 2015, at the age of 27. It was June 2014 when my daughter lost her voice. In March 2015 my daughter Tianna was diagnosed with a severe form of ALS caused FUS gene mutations. The doctor initially told us that she had 6 months to live....

Treg Charlton

Aug 10, 2024

Unexpectedly, I literally joined him in the fight after receiving the same diagnosis in 2010. My friend since childhood, Barry Winovich, was diagnosed with ALS in 2006. He was a beloved character & terrific advocate for finding a cure. Unexpectedly, I literally...

Brad Hansen

Aug 10, 2024

I will never forget the actions of the ALS team that day. They were comforting and compassionate. It started with left hand weakness and difficulty in grip strength. As a life-long athlete, I dismissed it as being out of shape or age related. This progressed from...