09/23/2026
🚨 ALS BREAKTHROUGH!🚨
Today is a day worth celebrating - and remembering. 🤍
The Cherokee PRCA Rodeo established the Jaci Hermstad Spirit Award to honor a young woman whose faith, courage, determination, resilience and love for life embodied the true spirit of a cowgirl.
Jaci Hermstad was crowned Miss Rodeo Cherokee in 2012. She loved horses, rodeo, and agriculture, and she had a way of making everyone around her feel special. Her infectious spirit and “Cowgirl Up” attitude left an impact that continues today.
Jaci also faced unimaginable challenges. After losing her beloved sister, Alex, to a rare and aggressive form of ALS, Jaci was diagnosed with the same devastating disease on Valentine’s Day in 2019 - eight years to the day after Alex’s passing.
But Jaci did not give up.
She fought relentlessly for a treatment, ultimately becoming the first person in the world to receive what became known as jacifusen. Although Jaci lost her battle with ALS in 2020 at just 26 years old, her fight continued far beyond her lifetime.
And today, the world received some truly incredible news.
Project ALS announced that the Phase 3 FUSION clinical trial for ulefnersen - the treatment that began as jacifusen - has met its primary endpoint.
Think about that for a moment.
What began as a desperate race to save one young Iowa cowgirl has now reached a major milestone in its clinical trial, bringing new hope to families facing this rare form of ALS across the world.
That is Jaci’s legacy.
Two sisters from Iowa, Alex and Jaci, helped change the story of FUS-ALS. Their courage, their family’s determination, and the tireless work of researchers, doctors, organizations, patients and families have carried their story forward.
Jaci once said:
“Courage is being scared to death but saddling up anyway.”
Today, we think of our former Miss Rodeo Cherokee and the incredible legacy she left behind.
Jaci, you were here. And you are still making a difference. 🤍
Today, we celebrate you, Cowgirl. 🐴
You can read and watch more about Jaci’s courageous story and the amazing international “jacifusen” Phase 111 clinical trial on her page, “Cowgirl Up for Jaci: Roping in a CURE for ALS”
https://www.facebook.com/share/v/1CR5Way66W/?mibextid=wwXIfr
Articles:
https://www.otsuka-us.com/news/otsuka-announces-transformative-phase-3-fusion-results-ulefnersen-bringing-fus-als-community
https://ir.ionis.com/news-releases/news-release-details/ionis-announces-positive-topline-results-phase-3-fusion-study
https://www.fiercebiotech.com/biotech/otsuka-heads-fda-ionis-partnered-als-drug-hits-primary-phase-3-endpoint
