Cowgirl Up for Jaci : Roping in a CURE for ALS

08/28/2026

This is incredibly special to us, and I hope you’ll take a few minutes to listen.

My heartfelt thank you to Nadia for bringing this story forward. It means more to us than I can say to have her and North Star ALS honor not only the origin of jacifusen, but the lives and people who made it happen.

I’m so grateful to share this conversation with Erin. She lived so much of this history alongside our family, and together, Erin, Valerie, Meredith, and Project ALS were the driving force in bringing together the remarkable team that answered an urgent call to help Jaci and changed what was possible for FUS ALS.

More than anything, we hope people understand the place our courageous girls hold in this history. How jacifusen came to be cannot be told without Alex and Jaci-their lives, what they gave, and how each helped make this treatment a reality. Alex’s selfless gift after her death helped advance the research. And when Jaci became sick, with time desperately against her and no guarantees, she took an extraordinary leap of faith-not only for the chance to save her own life, but with the hope that what was learned from her could one day help others.

As their Mom and Dad, our hearts will always ache for the years and the lives Alex and Jaci should have had. Nothing will ever make that loss okay. But alongside that heartbreak is an indescribable pride in our girls. Through everything ALS took from them, they still gave so much of themselves-and what they helped set in motion did not end with them. A treatment created in a desperate race to save Jaci is now offering others with FUS ALS a chance that did not exist before.

Their lives mattered…. what they gave mattered….. and what they helped make possible continues today.

I hope you’ll listen and share.

Behind jacifusen (ulefnersen) is a story of two daughters, a family facing unimaginable loss, and a global community of FUS families determined to make their rare form of ALS matter.

In this episode, Lori Hermstad shares the lives and legacies of her daughters, Alex and Jaci, and how their family’s advocacy helped change the trajectory of FUS-ALS research. Erin Fleming, now co-founder and COO of ProJenX and formerly Director of Research Operations at Project ALS, brings the perspective of the organization that supported the Hermstad family and, together with the ALS Association, helped fund the therapeutic’s initial development.

What began with impacted families finding one another, seeking answers, and connecting with the right researchers became a clinical development program.

Jacifusen, the investigational antisense oligonucleotide first developed for and named after Jaci, is now also known as ulefnersen and has advanced to an international Phase 3 trial.

This is not a simple story of heroism. No family should have to endure what the Hermstads did to move science forward. It is a story of love and loss, philanthropy and scientific collaboration, and why even the smallest subgroups within a rare disease matter for us all.

ALS Network | Les Turner ALS Foundation | Target ALS | Genetic ALS & FTD: End the Legacy | Payne In The A.L.S.

Listen here:
Apple Podcasts: https://podcasts.apple.com/us/podcast/perspectives-the-human-side-of-als-research/id6793122559?i=1000786071491
Spotify: https://open.spotify.com/episode/5AqU8JSXFXEVTdC5nkyltu?si=4f5bc2023ede404c
YouTube: https://www.youtube.com//podcasts

08/22/2026

Thank you so much to Project ALS for remembering Alex and Jaci on their birthday and for honoring their lives in such a special way. It means more to us than words can say to know they are still remembered and that their impact continues. 🫶🏻

08/03/2026

Thank you, North Star ALS, for creating a platform that gives a voice to the ALS community.
I’m truly honored to be part of this important conversation and grateful to stand alongside such incredible people. Thank you for the opportunity to honor Jaci and Alex while advocating for families whose lives have been touched by this disease.

Join us August 4 for this conversation.

Register here or at link in bio: https://northstarals.app.neoncrm.com/forms/21

Sporadic. Genetic. Familial.

These words describe ALS and FTD, but they rarely capture what it's actually like to live with them.

What if there's a new genetic mutation with no family history? What if ALS is all your family has ever known? What if genetic testing doesn't provide answers? Or one mutation can lead to ALS, FTD, inclusion body myopathy, Paget's disease, or some combination?

These experiences remind us why understanding disease biology matters. Some therapies may help many people by targeting shared disease mechanisms, while others will need to address the specific biology driving an individual's disease.

Join us on August 4 at 1pm PT / 4pm ET for this conversation. Four remarkable individuals share perspectives that challenge assumptions, deepen our understanding, and remind us why lived experience belongs at the center of research.

Because in the end, this isn't just research. It's our research.

Register here: https://northstarals.app.neoncrm.com/forms/21

ALS Network | Les Turner ALS Foundation | Target ALS | Genetic ALS & FTD: End the Legacy | Payne In The A.L.S.

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 ...