06/11/2026 A Special Gift

 06/11/2026

The Kind of Love That Changes Lives: Our Iowa Family

Many of you have heard us speak about the incredible Hermstad family from Iowa. Jeff and Lori are the kind of people whose story stays with you long after you hear it — a story marked by heartbreak, courage, and a love that continues to ripple outward in ways only God Himself could orchestrate.

Jeff and Lori lost their two beautiful twin girls to the same dreadful monster Jacob battles today — ALS, specifically the P525L gene mutation. Their journey has been steeped in unimaginable grief, yet somehow, they have chosen to turn that grief into compassion, connection, and purpose. And because of that choice, our lives — and Jacob’s life — are forever changed.

A Friendship Born from Shared Pain

From the very beginning of Jacob’s diagnosis, the Hermstads reached out to us. They didn’t know us. They didn’t owe us anything. But they knew our pain, and they stepped into our lives with open arms.

They have stood in our corner ever since — cheering, praying, supporting, and even driving all the way from Iowa to be here for Jacob’s Pioneer Award presentation in April. That’s who they are. That’s the kind of love they carry.

Jaci’s Legacy Lives On

Many people don’t realize that the clinical trial drug Jacifusion — the very drug keeping Jacob with us today — was named in honor of their precious daughter, Jaci. She bravely donated her own body so a drug that had never been tested on a human being could be tried.

Because of her sacrifice, Jacob is still here. There is no greater gift.

A Package on the Porch

This morning, a package arrived on our doorstep. When Barb opened it, we found the most beautiful, custom-made treasures from our Iowa family.

Inside were two handcrafted crosses — one for Barb and one for me — each with Jacob’s actual signature engraved on the back. (How Lori managed to pull that off… well, she is sneaky sneaky!)

And then there was the belt buckle.

Oh my Lord… the craftsmanship, the detail, the love poured into it. Anyone who knows Jacob knows how much he loves his cowboy bling. Boots and buckles were his everyday look before ALS tried to slow him down. This buckle wasn’t just a gift — it was a reminder of who he is, and who he has always been.

The Real Gift

But here’s the truth: The real gift isn’t the crosses or the buckle.

It’s Jeff and Lori themselves.

They are two of the most remarkable people God ever placed on this earth. Their strength, their compassion, their generosity, and their unwavering love have become part of our family’s story. They have walked through the darkest valley imaginable, yet they continue to shine light into the lives of others.

We will treasure their friendship all the days of our lives.

Love Is Stronger

God continues to weave people into Jacob’s journey who remind us that love is stronger than ALS, stronger than grief, stronger than fear, stronger than anything this world can throw at us.

And the Hermstads are living proof.

Their daughters’ legacy lives on — not only in the science that is saving Jacob’s life, but in the love they pour into others, day after day, mile after mile, heart to heart.

04/25/2026 Jacob’s In‑Person ProjectALS Pioneer Award Ceremony

 04/25/2026 

Today Was Jacob’s In‑Person ProjectALS Pioneer Award Ceremony

It was one of those rare days that feels bigger than itself — the kind you know you’ll carry with you for the rest of your life.

The ProjectALS Pioneer Award ceremony was held this afternoon at Winfield Baptist Church, and it was nothing short of extraordinary. Margo, Sage, and Meredith from Project ALS flew in from New York to be here, and Lori and Jeff Hermstad made the long drive all the way from Iowa to spend the day with us. Their presence meant the world.

Between 250 and 300 people filled the auditorium — friends, family, neighbors, supporters, and people who simply wanted to stand with Jacob on this milestone day. The atmosphere was warm, emotional, and full of gratitude. Everything came together perfectly.

The Ridgeview BBQ was a tremendous success, and there was more than enough for everyone. It felt like a true community gathering — people sharing food, stories, hugs, and tears.

Over the past week, we’ve had radio interviews, WSAZ News Channel 3 coverage, and even a feature on the Saturday evening news, all helping shine a light on Jacob’s journey and the importance of this award. Seeing the community rally around him in so many ways has been overwhelming in the best possible way.

Today wasn’t just a ceremony. It was a celebration of courage, love, and the incredible village that continues to lift Jacob up.

04/17/2026 An Opened Door with Synchron BCI

 04/17/2026

After about two weeks of waiting since NeuroLink turned us down, we received an unexpected message — this time from Synchron, one of NeuroLink’s major competitors and a company known for having a far less invasive approach to implanting their device.

Jacob and I agreed to a call with their team. What we thought might be a quick conversation turned into a 45‑minute deep dive into Jacob’s history, his diagnosis, his progress, and his goals. Their team asked thoughtful questions, listened closely, and took the time to truly understand where Jacob is and what he’s fighting for. By the end of the call, they made a decision: Jacob is moving to the next stage.

This places him in what they call a “virtual waiting room” — a holding space where candidates wait for their opportunity to see if they qualify for this next, potentially life‑changing step in communication technology.

So now we wait. Patiently. Hopefully. Prayerfully.

This could be a major leap forward for Jacob, and while nothing is guaranteed, we’re grateful for the door that just cracked open. One step at a time… and today, this was a big one.

04/13/2026 Treatment #20 ION363 PHASE III #5

​Monday marked our 20th clinical trial dosing of our miracle drug, Jacifusen — and the fifth dose since entering Phase 3.

It’s hard to believe we’ve reached twenty. Every single one feels like a gift, and today’s definitely earned a spot in our “top five” list. Everything went as smoothly as we could’ve hoped.

Dr. Kolb was genuinely excited about Jacob’s condition and the direction this drug is heading as it moves toward FDA approval. Jacob’s bloodwork was completely normal, and just like the last few times, he felt good enough afterward to ask for a movie. This time we went to see Super Mario Galaxy, and he loved it.

By Wednesday, the leg pain had returned — a lumbar puncture side effect we’ve unfortunately grown used to — but thankfully it’s nothing a little Tylenol can’t handle.

Another dose behind us. Another day to be grateful. Another step forward.

03/30/2026 Neurolink BCI...When One Door Closes, Another Will Open

​03/30.2026

Jacob and I had a call today with Neuralink’s Patient Registry Team. We went into it with real excitement — this felt like a chance to explore whether a BCI, a brain‑computer interface, might someday help Jacob communicate. Neuralink, Elon Musk’s company, is leading the way in this technology, so the opportunity felt meaningful.

But as soon as we shared that Jacob is enrolled in the Ionis Pharmaceuticals ION363 clinical trial, the answer was immediate. His participation in that study automatically disqualified him from theirs. Even though one is a drug delivered through lumbar puncture and the other is a technological implant, there was no flexibility in their criteria. The door closed quickly and firmly.

Moments like this used to shake us. Now, they remind us of something we’ve learned over and over: when we follow the Holy Spirit and trust the Lord with all our hearts, He is faithful to open another door — often one we never expected — right when we need it.

So we’re not discouraged. We’re not defeated. And we’re not done searching for ways to help Jacob communicate more freely.

We’ll keep praying. We’ll keep trusting. And we’ll keep believing that the right door will open in God’s perfect timing.

03/25/2026 PEG TUBE REPLACED

03/25/2026

Jacob's Mic Key feeding button had been in place since June of last year. These are generally replaced every three to six months, so we made the decision to go ahead and get it replaced. 

The radiology department did a fantastic job and had him in and out within minutes. 

Still loving the new button! So much easier for Jacob and us.

03/16/2026 FOUR Years Later

03/16/2026 

It’s hard to believe it’s been four years since we sat in that room with Dr. Hollinger and heard the words no family ever wants to hear: “It’s ALS.”

Four years since our world tilted… and yet four years of watching God do what only He can do.

And here we are.

Still standing. Still fighting. Still believing.

Because GOD IS AMAZING.

He has sustained us when we had no strength left.

He has saved us in moments we didn’t even realize we needed saving.

He has performed miracle after miracle—quiet ones, loud ones, undeniable ones—reminding us over and over that He has a plan and a purpose for Jacob’s life.

Our friend Sumitha said it best:

“Jacob is already healed… now we wait for his body to show the signs.”

And that’s exactly where we stand today—

in faith, in hope, in gratitude,

trusting the God who has carried us through every valley and every victory.

Four years later, we can say with full confidence:

God has never failed us, and He’s not about to start now.