For many—even medical professionals—ALS is a distant and unfamiliar disease. But for Michelle, it’s deeply personal and painfully real. Through her family’s research, they’ve traced ALS back at least seven generations, with around 65 extended family members lost to the disease—including her mother, grandfather, and great-grandfather. Today, her brother is living with ALS, and her son carries the SOD-1 mutation, which increases the risk of developing the disease.

Diagnosed with familial ALS at 48, Michelle has become a strong advocate for the ALS community. She shares her story on podcasts, participates in support groups and webinars, fundraises and participates in local ALS walks, and has lobbied for ALS legislation. She helped advance the approval of Tofersen (an ALS-SOD1 treatment) and was the first in Wisconsin to receive it. Michelle serves on national and international patient advisory boards, supports research as a NEALS (The Northeast Amyotrophic Lateral Sclerosis Consortium) ambassador, and has been featured in media and educational panels. 

For Michelle, ALS is more than a rare disease, it is a generational reality. Its devasting effects has impacted her family for decades, but she is fiercely committed to changing that legacy.