Mindy Uhrlaub

Aug 10, 2024

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...

Daughter, Familial ALS Family Member, C9 Gene Carrier

Aug 10, 2024

I took the test because I knew it would be positive. I thought: “I take after my dad in so many things, why would this be any different?” ALS does not discriminate against race or gender – We are Latinos. I lost my dad to ALS. He was kind, genuine, generous, ate...

Robert Purdy

Aug 10, 2024

All great things start with the littlest acts and I am trying to do my part in making a difference. My name is Rob Purdy and my family has inherited ALS. So far it’s claimed the lives of my mother, sister and two cousins. I’m inspired by this organization and am...

Kimberly Wilkins

Aug 10, 2024

There are a total of 10 children among my siblings and me who may also be gene carriers. My grandfather (whom I never met), my father, and my brother have passed from ALS. I am an ALS gene carrier. There are a total of 10 children among my siblings and me who may also...

Lisa Jensen

Aug 10, 2024

We joined walks to raise money and awareness and donated money in the hopes of a cure. My Dad died from ALS in 1994. His diagnosis opened a can of worms. We started hearing from aunts, uncles and cousins on his side, misdiagnosed and lost to us through lack of...