09/29/2026 The NEW Control Bionics NeuroStrip

 09/29/2026

A Big Step Forward in Jacob’s Communication Journey

Today Jacob and I met with Christina Dietz from Control Bionics (Cincinnati Office) at Teays Physical Therapy Center. She arrived with something we’ve been eagerly waiting to try—the brand‑new NeuroStrip.

At first, things didn’t go as planned. Christina worked hard to get the device running, but it just wouldn’t cooperate. She promised she’d get it figured out that evening and call us the next day. True to her word, she called on Wednesday and personally walked me through setting up the new device.

And let me tell you… it’s incredible.

The NeuroStrip weighs less than a sheet of paper. Jacob can’t even feel it on his leg. It functions almost exactly like the NeuroNode he’s been using, but the weight difference is a game‑changer for him. Because these devices are so small, each kit comes with two strips. They have a four‑hour battery life and only need about two hours to recharge, which means Jacob can keep one on his leg throughout the day without interruption.

We’re currently demoing the NeuroStrip for 60 days. After that, we’ll need to decide whether to purchase it. The device costs $2,500, plus a monthly fee for the bandage straps that adhere it to Jacob’s leg.

So… it looks like another fundraiser may be in our future, because as of right now, this new device feels like a definite win for our hero. Anything that helps Jacob communicate more easily is worth fighting for, and this little strip might just be the next big leap forward.

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.

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.

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.

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.

08/14/2026 Hospital Follow‑Up Appointment at Dunbar Medical

 08/14/2026

Today we had our hospital follow‑up appointment with Dr. Trump at Dunbar Medical, and it was exactly the kind of visit we needed. He examined Jacob thoroughly and walked us through several recommendations based on the concerns raised during his hospital stay.

One of the biggest takeaways: we are now convinced Jacob did not actually have pneumonia. The hospital bundled together a handful of worst‑case‑scenario infections and treated him with a barrage of antibiotics to wipe out anything that might have been present. While we’re grateful they were cautious, it’s clear now that Jacob’s lungs were not the issue.

Dr. Trump was very encouraged by Jacob’s vitals. He believes the high triglycerides were caused by the infection and the DKA (diabetic ketoacidosis) that happened when Jacob’s blood sugar skyrocketed the night he was admitted. With those issues resolving, Jacob’s numbers and overall stability look much better.

A huge blessing last week: Dr. Trump was able to get Jacob approved for the Dexcom Continuous Glucose Monitoring system. This means no more constant finger pricks — something Jacob’s poor hands desperately need a break from.

He does want to run some follow‑up blood work in about a week, just to make sure everything continues trending in the right direction. But overall, he feels very good about Jacob’s current health and the direction things are heading.

Step by step, Jacob is getting stronger — and today was another encouraging move forward.

08/12/2026 Marshall Health Endocrinologist

08/12/2026

Today we had our appointment with the endocrinologist at Marshall Health, and it was a really productive visit. We met with Lacy and Cindy, who were both incredibly kind and thorough. Cindy evaluated Jacob and made an important change to his diabetes management: she has taken him off the sliding insulin scale. Instead, Jacob will now receive his insulin 15 minutes before each meal, which should help his numbers stay steadier throughout the day.

They also adjusted his feeding schedule. Jacob will now have four meals a day instead of three. It’s the same total amount of formula he’s always had—just divided into an extra feeding to help his body process everything more smoothly.

When we first started this new insulin schedule, Jacob was receiving 7 units. Over the last three days, we’ve gradually increased that to 12 units. His glucose levels have been ranging from 130 to 255, and we’re working hard to keep him under 250 as his body adjusts. This period is known as the honeymoon phase, where his system is learning this new routine and settling into a more stable insulin pattern.

Every day brings new information, new adjustments, and new hope. We’re grateful for the team at Marshall Health and for all of you who continue to pray, support, and walk alongside us. Jacob is strong, resilient, and adapting beautifully—and we’re right there with him, learning as we go.