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!

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.

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.

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.