Sunday, November 1, 2026

11/01/2026 Here We Go, Steelers: A Weekend We'll Never Forget

11/01/2026

Some dreams are bigger than football.

For Jacob, a lifelong Pittsburgh Steelers fan, the chance to experience an NFL game from the sidelines wasn't just another weekend getaway. It was the opportunity to live a dream that many people helped make possible.

Making that dream a reality required far more than purchasing a game ticket. Traveling with advanced ALS involves accessible medical transportation, wheelchair accommodations, nearby lodging, equipment, caregivers, and extensive planning. When friends organized an online fundraiser to help cover those expenses, people stepped forward in a remarkable way. Many of them had never met Jacob, but they believed in helping make this experience possible.

Because of their kindness, Jacob was given the opportunity to do what so many Steelers fans dream about: feel the energy of game day, wave a Terrible Towel alongside thousands of fans, hear the roar of the crowd, and experience the team he has loved his entire life up close and in person.

What happened next was more than we could have ever imagined.

There are some weekends that come and go, and then there are weekends that become part of your family's story forever. Our recent trip to Pittsburgh was one of those unforgettable moments.

As soon as we crossed into the Steel City, the excitement was through the roof. Jacob could hardly contain himself. This wasn't just another road trip. For a lifelong Steelers fan, this was a dream unfolding in real time, and from the very beginning, Pittsburgh welcomed us with open arms.

One of our first stops was Yinzers in the Burgh, where owner Jim Coen treated us like family and outfitted us with Steelers gear. Even Barb ended up sporting black and gold, which gave us all a good laugh. The excitement was contagious, and before we knew it, we were fully immersed in Steelers Nation.

From there we made our way to Mount Washington, where the breathtaking view of Pittsburgh stretched out before us. Looking across the city skyline and spotting Acrisure Stadium in the distance made everything feel real. We captured some incredible photos, including one of Jacob with the stadium in the background, a reminder of why we had made the journey in the first place.

Our home for the weekend was the historic Omni William Penn Hotel. To be honest, it felt a little fancier than a couple of West Virginia hillbillies are used to, but it quickly became the backdrop for one of the most remarkable evenings we've ever experienced.

That night, Jacob was the guest of honor at a private dinner where he met Pittsburgh Steelers legends whose names are woven into franchise history.

He spent time with four-time Super Bowl Champion John Kolb, former Steelers wide receiver Ernie Mills, Steelers great Dwayne Woodruff, and the legendary Rocky Bleier, whose story of military service, perseverance, and championship success continues to inspire generations.

For Jacob, these weren't simply former football players. They were heroes.

The highlight of the evening came when Rocky Bleier allowed Jacob to wear his four Super Bowl rings.

Not one.

Not two.

Not three.

But four Super Bowl championship rings resting on Jacob's hand.

For a young man who has faced more challenges than most people can imagine, that moment was priceless. 

Then came game day.

We had on field passes and watch both teams warm up before the game. 

The surprises continued when Steelers long snapper Christian Kuntz took time to stop by, share a few moments with Jacob, and pose for photographs. Every interaction throughout the weekend served as a reminder that beyond the jerseys and accomplishments are people with generous hearts.

The energy throughout Pittsburgh was electric, and as the Steelers earned a victory, Jacob soaked in every second of the experience. The sights, sounds, cheers, and sea of black and gold created memories that will last a lifetime.

Yet one of the most meaningful moments of the entire weekend happened away from the stadium lights.

We met an incredible woman named Michelle White during a tailgate gathering with the RENAGE Tailgaters. She spent time talking with Jacob, laid hands on him, and prayed over him. In the midst of all the excitement and celebration, it was a powerful reminder that God's presence can be found in the most unexpected places.

As we reflected on everything that happened, one thought kept returning to our hearts:

Blessings are all around us.

Sometimes they look like a stranger helping fund a dream. (Thank you Shawn Spinda)

Sometimes they look like football legends treating a young fan like family.

Sometimes they look like a simple prayer offered from the heart.

And sometimes they look like a young man from Putnam County living a dream that once seemed impossible.

Pittsburgh gave us memories, photographs, and souvenirs. But more importantly, it reminded us how much goodness still exists in this world and how extraordinary people can be when they come together for someone else.

We came home with full hearts, overwhelming gratitude, and memories we will treasure forever.

And whenever we think back on that remarkable weekend, we'll hear those three familiar words echoing in our minds:

"Here We Go, Steelers!"





Thursday, October 22, 2026

10/22/2026 Back to the Movies

 10/22/2026

We took Jacob to see Heart Of The Beast at Marquee Cinemas in South Charleston tonight!
Heartwarming, heartbreaking and all around AWESOME!
Go see it!!!!! WE LOVED IT!


Tuesday, October 20, 2026

10/20/2026 BCI (Brain Computer Interface) Struggles

10/20/2026

Right now, Jacob’s entire voice is reduced to a single beep.

The only communication method we have relies on surface EMG sensors reading muscle signals from his right quad. At 27 years old, Jacob has so much to say, so much knowledge and personality to share with the world, but he is trapped behind technology that only gives him a binary signal.
We have spent the last few years desperately pursuing a Brain-Computer Interface (BCI) clinical trial to restore his ability to communicate, only to run into brick wall after brick wall built by rigid trial requirements:
Neuralink (Elon Musk): Disqualified him simply because he is enrolled in another trial for an ALS medication—even though his drug trial has zero technical or physical overlap with a neural implant.
Paradromics (Matt Angle): Disqualified him because he has a tracheostomy and relies on full-time mechanical ventilation. The tragic irony is that in ALS, the diaphragm frequently fails before total loss of communication; excluding ventilated patients virtually eliminates the very people who need neural interfaces the most.
Synchron (Bill Gates/Jeff Bezos): A cutting-edge avenue we were deeply hopeful for, but their trials are currently paused due to software setbacks, leaving no clear timeline for resumption.
Precision Neuroscience (Private Corp): One of our first and top choices given their minimally invasive approach, but their clinical trials are still over a year away from being ready.
This experience highlights a glaring systemic flaw in how assistive neurotechnology is being evaluated. BCIs hold life-altering promise, but exclusionary criteria are actively screening out the patients living in the greatest urgency. When trial protocols mandate that you must not be fighting the disease on any other front, or that your progression must stop short of respiratory compromise, they fundamentally miss the reality of ALS.
We are sharing Jacob’s story not just out of our own frustration, but to advocate for an urgent shift toward flexible, patient-centered clinical trial design. Technology must be designed and tested around the lived needs of real patients, not ideal laboratory conditions. Jacob deserves a voice—and so does everyone fighting this battle alongside him.




Wednesday, October 14, 2026

10/15/2026 Follow‑Up With Dr. Trump POST PNEUMONIA

10/15/2026

We had our follow‑up appointment with Dr. Trump at Dunbar Medical today, and it was one of those visits that leaves you breathing a little easier. Everything looked great for Jacob. His blood pressure was perfect, and even his pulse — usually much higher — came in at 84 beats per minute, which is incredibly low for him.

Dr. Trump was genuinely pleased with Jacob’s progress and with how strong all his vitals looked. He didn’t make any changes, just encouraged us to keep a close eye on him, the way we always do.

He wants to see Jacob again in three months, which feels like another sign that things are finally settling into a healthier rhythm.

Step by step, Jacob keeps moving forward — and today was a good day.



Sunday, October 4, 2026

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.






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.