Jean Swidler, I am a family member in a familial ALS family, a family member of someone living with ALS, an ALS gene carrier, someone who cared for a person we’ve lost to ALS.

Jean hopes that in organizing with other familial ALS family members and participating in research we can increase the standard of care for familial ALS patients, but also hopefully prevent and better treat this terrible disease.

“My first encounter with ALS was witnessing my grandmother struggle with paralysis when I was 6 years old, and she was in her late 60s. Following her passing, I was exposed to my mother’s intense anxiety over developing ALS for the next 25 years. After years of being worried about developing ALS, my mother was diagnosed with ALS, and after a brutal 18 months passed from this disease. Following her passing I decided to participate in research and became a research subject. I hope that in organizing with other familial ALS family members and participating in research we can increase the standard of care for familial ALS patients, but also hopefully prevent and better treat this terrible disease.”