Thursday, September 24, 2026

09/24/2026 PNEUMONIA

 09/24/2026

Another Unexpected Turn in Jacob’s Health

Over the past few days, Jacob’s secretions had become harder to suction, and something just didn’t feel right. Earlier this week, Ohio State University had reported his white blood cell count as significantly high. They recommended we follow up with our PCP and get blood work done to make sure everything was okay.

After the blood tests, we headed straight for a chest X‑ray. The next day, we got the call no parent ever wants to hear—Jacob has pneumonia.

Our doctor immediately put him on a seven‑day course of levofloxacin. The challenge was actually getting the medication. No pharmacy in our area had it in stock, and none could get it until the following week. So Mom made the drive to Huntington to pick it up from the Marshall University and Cabell Huntington Hospital pharmacy. When your child needs something, you do whatever it takes.

Through all of this, Jacob kept telling us he didn’t feel bad at all. No complaints. No mention of feeling sick or tired. Just that calm, steady spirit he always carries.

But that’s our boy. He never complains. He never has anything negative to say. He just keeps going.

Even in moments like this—when the tests say one thing and his attitude says another—Jacob shows us what true strength looks like.



Tuesday, September 22, 2026

09/22/2026 FUS-ALS Trial Meets it's Primary Endpoint

09/22/2026

Hope is powered by science, made possible through partnership, and driven by the determination of patients and families.

Today, we announced positive results from the Phase 3 FUSION trial evaluating ulefnersen, an investigational RNA-targeted medicine, in people living with FUS-ALS. As the first FUS-ALS clinical trial to meet its primary endpoint, these findings mark a significant milestone for the FUS-ALS community.
We are deeply grateful to the patients, carers, investigators, advocates and the broader FUS-ALS community whose courage, commitment and partnership helped make this achievement possible. Their contributions, trust and courage continue to move science forward and bring us closer to a potential targeted treatment.



Monday, September 21, 2026

09/21/2026 TREATMENT #22 ION363 PHASE III #7

09/21/2026

This week marked Jacob’s 22nd clinical trial dosing of Ion363 (Jacifusen / Ulefnersen), and it was a stretch of days filled with relief, gratitude, and one terrifying moment that reminded us how quickly life can turn.

Early Monday morning we arrived at the Martha Morehouse Center for Jacob’s lumbar puncture. Dr. Kolb remains cautiously optimistic — scientific, steady, and hopeful — and praise the Lord, the procedure went perfectly. Those smooth, uneventful dosing days feel like gifts, and we never take them for granted.

That evening, we were kicking back at the Hampton Inn OSU, finally relaxing after a long day and watching Monday Night Football. Out of nowhere, the hotel fire alarm exploded through the quiet. Panic hit instantly. No one at the front desk was answering, and we were scrambling to figure out how to get Jacob out safely — and quickly — without using the elevators. For a few minutes, everything felt chaotic and uncertain.

Thankfully, it turned out to be a false alarm. Someone had pulled the lever. But by then, our heart rates were through the roof and nobody was feeling tired anymore. It’s amazing how fast calm can turn into crisis, and how fast crisis can turn back into relief.

Tuesday’s drive home was peaceful and uneventful — exactly what we needed after the adrenaline of the night before.

All in all, it was a great trip. Another dose behind us, another safe return home, and another reminder of how fragile and precious each moment truly is.



Thursday, September 10, 2026

09/10/2026 NEW LIQUID HOPE

 09/10/2026

We’ve officially moved Jacob over to a new formula called Liquid Hope, and it has been an absolute blessing. It’s a fully natural, plant‑based formula that gives him 1800 calories a day while keeping his total carbs at just 136. That balance has brought Jacob’s diabetic numbers into a range that has been incredibly easy to manage.

Even better — he’s gaining body mass, looking stronger every day, and feeling fantastic. The difference is visible, steady, and so encouraging.

We are grateful, relieved, and excited for what’s ahead. Jacob feels great… and God is so good.