The Hermstads
The following is a personal message from the Hermstad family.
Our family unfortunately learnt the devastating reality of ALS when Alex, the first of our identical twin daughters, began experiencing weakness at age 11. She was later diagnosed with an aggressive form of ALS caused by a mutation in the fused in sarcoma (FUS) gene. We sadly lost our beautiful, brave Alex at just 17 years old.
Tragically, in 2019, our other courageous and mighty daughter, Jaci, became symptomatic at age 25. With relentless and steadfast help from Project ALS, Jaci became the first person to receive a groundbreaking novel medication, which is now in an international clinical trial and offering hope to other FUS-ALS patients. While we are shattered we lost our beloved Jaci too, we are deeply passionate about the research that Project ALS champions, turning heartbreak into progress and bringing us closer to a cure.
Just as our daughters were our whole world, everyone diagnosed with ALS means the world to someone. And in honor of our fearless girls we will continue to stand proud with Project ALS as they refuse to never give up until the day we can celebrate a cure together.
– Lori Hermstad
