In a cruel twist of fate and genetics, two twins both lost their young lives to ALS. Here, I talk to their mother Lori Hermstad who is speaking up to help keep their legacy alive.

In this episode, I catch up with Lori Hermstad of Iowa. Lori lost her 2 twin daughters to ALS at 17 and 26. The youngest, Alex was diagnosed at 11, put on vent at 12, and died at 17. Eight years to the day that Alex died, Jaci was diagnosed at 25 and lived one year. They had no idea Jaci would get ALS too. I talked to Lori the week the girls would have turned 28. Lori broke down - saying some days she wants to curl up in a ball and the next she wants to tear down walls. It’s been 16 months since Jaci passed in May 2020. Lori’s biggest fear remains that her daughters would be forgotten. So in this episode Lori has a chance to talk about her daughters and how they inspired us to live this life to the fullest. In this emotional chat you’ll hear how the Hermstad family battled ALS and helped to develop a new treatment for this rare form of ALS. Research is showing that there is a particular gene that appears to be common among some of the few child ALS sufferers – the FUS gene. If you would like to help Lori keep Alex & Jaci’s legacy alive, share this episode with a friend or leave a review on Apple podcasts. That will help others find this and hear their story. Thank you for listening.

Hugs, Lorri

About Lorri Carey

On Friday the 13th, February 2004 at the age of 37, I was told I have ALS. I’m dying from ALS, yet I’m so encouraged to live life to the fullest. I’ve been inspired by so much to stay focused on the positive. I’m dying to tell you about what gives me strength, makes me smile and keeps me hopeful – in hopes of inspiring you too!


  1. Jennifer on October 2, 2021 at 3:40 am

    Wow. So beautiful. Lori is so brave.
    I’m so blessed to have Lori in my life. Beautiful Jaci was so amazing. I miss her voice, her smile and her friendship.
    I’m one of the other moms who lost their 16 year old daughter to ALS on the FUS gene.
    We are coming up on 4 years next week that we lost our precious girl a week before her 17th birthday. We sure miss her.
    Life is precious. You are amazing for maintaining your positive attitude.

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