Cowgirl Up for Jaci : Roping in a CURE for ALS

06/10/2026

Congratulations to Deidra Doeden on being selected as the recipient of the Jaci Hermstad Spirit Award during the Miss Rodeo Cherokee Pageant.

A heartfelt thank you to the Cherokee PRCA Rodeo brought to you by Central Bank & Central Insure
and the Cherokee Rodeo Board for continuing to honor Jaci each year and for keeping her spirit and legacy alive in a way that reflects who she was so beautifully. It means so much to see her kindness, determination, and love for rodeo continue to inspire future generations.

Thank you as well to ’ King Customs for designing such a stunning buckle each year as a tribute to Jaci. Your talent and creativity help capture Jaci’s story and the lasting impression she made on so many.

Congratulations again, Deidra! 🫶🏻

05/21/2026

Resilient sisters from Iowa, Alex and Jaci.
A story changing lives worldwide.

Thank you to Ben Stiller and Hugh Jackman for “doing the Jaci” in 2020, shortly before we said our final goodbye to Jaci.

We lost our twin daughters, Alex at 17 and Jaci at 26, but the love and goodness they gave continue to brighten this world.

Jaci fearlessly fought for an experimental ALS treatment she hoped would one day help others-and now it is.

This ALS Awareness Month, I’m sharing an updated video and opening the opportunity for anyone who would like to honor both Jaci and Alex through “doing the Jaci.”

“Doing the Jaci” is simple: a small act of kindness, joy, encouragement, or love in honor of the way Jaci and Alex courageously lived.

Whether you’re a lifelong friend, family member, athlete, artist, or someone hearing their story for the first time-your voice truly matters.

If this touches your heart, please share the video and help keep their light going.

And if this story reaches larger voices who feel inspired to help carry it forward- people like Caitlin Clark, Indiana Fever Cooper DeJean, Philadelphia Eagles George Kittle, San Francisco 49ers Lindsey Vonn
Cody Johnson or Momoa-we would be incredibly honored. It would mean so much to see Alex and Jaci’s story reach hearts far beyond Iowa in ways we never imagined.

Do the Jaci ~ Share the video ~ Pass it on. 💛

From hometown friends to familiar faces around the world, every voice helps carry Alex and Jaci’s story forward with compassion, hope, and greater awareness-reminding families facing ALS that they are seen, supported, loved and never alone.


*Video clip courtesy of CBS News

04/29/2026

It is our honor to share a powerful tribute from an extraordinary event we were extremely proud to be part of this past weekend-an experience that will stay with us forever.

We had the privilege of attending a special celebration for Jacob Harper, a phenomenal young man who has now courageously reached his 20th clinical trial dosing for FUS-ALS and his fifth dose since entering Phase 3.
Jacob has been part of the jacifusen trial, and to share in this moment was truly hard to put into words.

Years after Jaci’s fearlessness, perseverance, and hope in helping bring this treatment to life, it felt like a full-circle moment.
The very therapy she helped set into motion is now part of a larger story, and we continue to pray it brings help and healing for others. The trial has now concluded, and we patiently wait with hope for the data.

We are incredibly grateful for the opportunity to meet the amazing Harper family in person. They were every bit as wonderful as we imagined-and Dale, your music was outstanding!

Jacob, Dale and Barb ….finally meeting you face to face was such a blessing and gift! Words will never fully describe what it meant to us!
Your family carries a rare kind of strength rooted in love and held together by faith. It’s not just something you see-it’s something you feel when you’re with you.

We are truly grateful to Project ALS for supporting this extraordinary opportunity and for opening the door to moments like this-where research, persistence, and a shared commitment come together to move things forward. Jacifusen is living proof of what becomes possible when science is guided by urgency, compassion, and love.

And now, in this season of his treatment, Jacob is continuing that work in real time-infusion by infusion-with a courage that doesn’t waver and a presence that’s impossible to miss!

A sincere thank you to Project ALS for recognizing Jacob with the Erin and Leigh Viestra Pioneer Award. This honor is so well-deserved. He doesn’t just walk this ALS path, he carries it forward with grit, heart, and an indomitable strength that keeps going even when the road is anything but easy!

Congratulations, Jacob-way to go! We are beyond proud of you! Your perseverance, and the light and inspiration you bring to everyone around you, are truly inspiring!

This is what hope looks like when it refuses to give up….🙏🏻

We love you Harper Family!! 💙💜



Teamjacobwv

04/06/2026

There are moments in life when heartbreak and hope collide-and this is one of them.

This remarkable drug exists because of two extraordinary girls-our courageous daughters, Jaci and Alex Hermstad.

Alex endured and suffered a battle few could even imagine, and in doing so helped uncover the exact mutation that would later guide this science. Jaci, knowing exactly what lay ahead, heroically stepped forward anyway-not just for herself, but for humanity-so others might one day have a chance. Because she fought so relentlessly, she became the first person in the world to receive this experimental therapy.

This was never just about her life.
It was always about making the impossible possible for others.

The day we heartbreakingly lost Jaci, we made the final decision to send her to Mayo to donate her brain tissue - so her final act of selfless sacrifice could carry forward the fight she never gave up, bringing answers, advancing progress, and unlocking groundbreaking possibility through JACIFUSEN.

Even in loss, she continues to speak.

In that moment, Jeff and I had just one request-that Jaci and Alex would never be forgotten.

This link is about JACIFUSEN-the drug Jaci so fearlessly fought for, a journey so many of you witnessed and stood beside her through. Her Dr in this story is who initially named the drug jacifusen, in her honor.

We are incredibly grateful it is now creating a path toward treatment and real advancement for others-just as Jaci always intended.

But as their parents, NOTHING IS MORE PAINFUL THAN SEEING THE LIVES BEHIND THIS LEGACY GO UNMENTIONED AND FORGOTTEN!

Jaci never wanted to be an “experiment.”
She was a pioneer.
She was the first.

Her perseverance helped carry this treatment from possibility to reality-and she should always be recognized as part of its story.

We will always be deeply grateful for the breakthrough …
but we will never stop telling their story.

Because of their bravery, their priceless gift, and their unwavering determination, this treatment-once only an idea is now moving forward, bringing something ALS has never had before-

Real, tangible HOPE~

This is deeply personal-through Jaci and Alex’s selflessness, others are being given the invaluable gift of more time.
Even though Jaci and Alex are no longer here-their impact is everlasting. Their journey helped ignite research, accelerate an international clinical trial, and open doors to treatment that once felt impossible.

They didn’t just fight ALS…
they helped change its course.
Their fight didn’t end-it lives on in every life this drug will touch.

For every family facing this disease today-this is their legacy.

Hope lives here.
Because of them.

Thank you for caring about Jaci and Alex’s story and keeping their spirits alive~

God bless,
Lori and Jeff

https://m.youtube.com/watch?v=1BdZb67w43s

and Lou Gehrig ALS Center at Columbia University
Pharmaceuticals
Project ALS
Charles River Labs

"CBS Saturday Morning" looks at an experimental treatment for amyotrophic lateral sclerosis, or Lou Gehrig's disease, that is bringing hope to some patients ...

03/10/2026

Congratulations to Melissa for being such a passionate champion as she lives with ALS and continues to be a powerful voice and advocate for the ALS community.

Here is the direct link to the Alex and Jaci Hermstad Trailblazer Event.
https://youtu.be/sOM1eQowVhQ

A heartfelt thank you to Project ALS, Charles River Labs, and Ionis for your enduring support and for continuing to honor the legacy of Jaci, Alex, and this important work.

Blessings~

We are honored to present this year’s Alex and Jaci Hermstad Trailblazer Award to Melissa Diaz-Viera. 🏆

Melissa is a licensed clinical social worker whose advocacy and lived experience have made her an influential voice in the ALS community. Diagnosed with ALS in 2023, she has contributed to research through clinical trials, observational studies, technology pilots, and multiple patient registries. Congratulations Melissa!

02/04/2026

Twin sisters.
One devastating diagnosis.
And a path no one had built-until courage and extraordinary leaders stepped forward.

The 5th Annual Alex and Jaci Hermstad Trailblazer Award honors their legacy -where love meets science, and purpose meets hope, walking hand in hand.

This year’s theme, “Toward the Finish Line,” shares the remarkable origin of - born of love, driven by urgency, and sustained by an unwavering refusal to accept the impossible.

We invite you to join us as we look ahead toward what hope now looks like for the future treatment of FUS-ALS and related diseases, and toward a finish line once thought out of reach, now held in faith.

Please feel free to share this event to help spread awareness ~ thank you! 💖

🎟️ February 10 | 2 PM ET
This is a free event.
Register Now: https://bit.ly/4a0Y8Qv

~Thank you Project ALS, Charles River Labs and Ionis for your enduring support.

01/13/2026

So proud of Jacob! His perseverance and resilience are nothing short than extraordinary!
Thoughts, love and prayers continue for Jacob and his incredible family! 💙🙏🏻

Hello Everyone, this is Jacob.

I had my 19th treatment at OSU today! Dr. Kolb came in grinning! He was super positive, really excited about how I’m doing, and said my bloodwork and vitals looked great. He could feel my legs move and saw my eyes move a little too! He’s got big hopes for this clinical trial drug — and honestly, so do I.

After all that poking and prodding, I decided I earned a reward… so we went to see Zootopia 2. We were the only ones in the theater and the movie was great!

God is good. My team is amazing. And I’m grateful for every single day I get to keep fighting.

12/19/2025

Merry Christmas!

ALS took both of our daughters-but it did not take their legacy, their courage, or our unwavering determination to help end this disease.

Out of unimaginable loss, hope was born. Through research, our daughters helped change the course of ALS treatment worldwide.

As the year comes to a close, we invite you this giving season to stand with us and support the research that is transforming heartbreak into hope.

Please consider donating to Project ALS-fueling the science and accelerating the path toward a cure.

As always thank you for following Jaci’s page and the amazing love and support!
God Bless!
Lori and Jeff

Support ALS research today: https://bit.ly/3MqVICR ♥️

08/24/2025

Thank you Sonja for your kind words about Jaci and Alex. It truly helps our hearts.

Our prayers remain steadfast for Anna (in the picture) and for all our beloved, dear friends receiving jacifusen, courageously fighting this relentless disease. You are true heroes-extraordinary in spirit, unmatched in resilience, and a living testament to daily strength and hope.
Love and prayers always….❤️🙏🏻

08/21/2025

Weeks like this can be extra emotional as Jaci and Alex’s birthday approaches-Yet, in the midst of that ache, a gift of hope arrived just at the right time. A sweet video was sent to me—of our courageous little friend, Alonzo, just 7 years old, fearlessly riding bulls at the rodeos with a spirit far beyond his years. At the end of this particular ride, he lovingly tapped his heart twice, “doing the Jaci,” in a tribute and special memory for Jaci and Alex.
Thank you and bless you, Felicia and Alonzo. Your kindness transformed grief into light. You’ve given us a magical gift of remembrance, and gesture of love we treasure. What a joyful reminder that their spirit lives on in courage, love and unforgettable moments like this because you care! God Bless! 💙💜💫