10/16/2025 Dunbar Medical Check Up

10/16/2025

we had our 6 month check up with Dr Trump today. Everything is perfect. Blood pressure, oxygen levels, pulse, temperature, everything is perfect! Jacob continues to be amazing!!!

10/14/2025 Caregiving is no small task.

10/14/2025

Caregiving is no small task. It’s a journey filled with constant responsibility, and sometimes, one slip-up can feel like the world is crashing down.

Last night, I followed our usual bedtime routine with Jacob — removed the eyelid tape and got him settled in. But this morning, he woke up complaining that his eyes hurt and asked for drops. A few hours later, his eyes looked awful. I immediately messaged Dr. French, who said they looked very concerning and wanted to see Jacob that afternoon.

By 2pm, Barb got home and realized I had forgotten to take out Jacob’s scleral lenses the night before. They’d been in for nearly 20 hours. I was devastated. I cried and cried — I couldn’t believe I’d missed something so important.

But through prayer and grace, what seemed like a serious issue turned out to be a fixable mistake. Dr. French prescribed antibiotic drops, and Jacob should be back to normal in a day or two.

Lesson learned — this dad won’t be making that mistake again. 🙏

10/02/2025 Blood, Blood, and more Blood

 10/02/2025

When the Cough Assist Pulled Blood: A Night We Won’t Forget!

Tonight was supposed to be quiet. We’d just returned home from the Eastern Star event—grateful, tired, and ready to settle in. But caregiving doesn’t follow a schedule. As part of our routine, Barb and I decided to flush Jacob’s tracheostomy, a technique we learned from Dr. de Silva that’s been a game-changer in keeping his airway clear of bacterial buildup from saliva and mucus pooling above the cuff.

What happened next shook us.

As we flushed the trach and engaged the cough assist, it pulled a startling amount of blood. Not streaks. Not tinges. Blood. It was all Barb and I could do not to panic. We stayed calm on the outside, but inside we were terrified. I messaged Jeremy Cobb immediately and asked him to call me as soon as he could.

He called within fifteen minutes—bless him—and by then, the bleeding had already begun to ease. Jeremy explained that sometimes the cuff can adhere to the inside of the throat. When you deflate it, it’s like peeling skin off your lip. It bleeds. And when that blood mixes with mucus and saliva, it looks like far more than it is. A teaspoon can look like a pint when it’s running fast.

We monitored Jacob closely over the next few days, suctioning often and watching for any signs of distress. Thankfully, the bleeding subsided. Four days later, during the next flush, we were able to clear out the old blood and restore everything to normal.

This wasn’t just a medical moment—it was a spiritual one. A reminder of how fragile and sacred each breath is. A reminder of how quickly fear can rise, and how grace can meet it. We’re grateful for the wisdom of Dr. de Silva, the calm reassurance of Jeremy Cobb, and the strength that carries us through nights like this.

10/02/2025 Eastern Star Donation

 10/02/2025

We are deeply grateful to our generous donors, The Order of the Eastern Star, for their extraordinary gift. Today, they presented a check for $16,742 to ALS United Ohio in honor of Jacob.

Their tireless fundraising efforts will bring vital support to hundreds of individuals and families facing ALS—offering hope, resources, and strength to those on the frontlines of this journey.

Thank you for making a difference that truly matters! TeamJacobWV are making an impact on the world around us!

09/22/2025 How Scleral Lenses Helped an ALS Patient Maintain Communication

09/22/2025

In an publication by BostonSite, Jacob was used as the subject of the following article:

https://www.bostonsight.org/how-scleral-lenses-helped-an-als-patient-maintain-communication/

Meet Jacob

When 23-year-old Jacob Harper from Winfield, West Virginia, first heard the words “You have ALS,” in March 2022, he and his father sat in shock. Neither had a clear understanding of what the diagnosis meant. His mother, however, turned pale—she knew the weight of those three letters. Amyotrophic lateral sclerosis, or ALS, is a relentless disease. For Jacob, it was not just ALS but an ultra-rare genetic version, linked to the P525L FUS mutation. Doctors told him to expect only one to three years.

Jacob, once an avid outdoorsman who loved hunting, fishing, and working as a machinist and a welder, suddenly faced a future of increasing paralysis and loss. Yet, through determination, faith, and access to an experimental drug called ION363—nicknamed “Jacifusen”—he has lived beyond those initial predictions. Even as the disease advanced, Jacob and his family found new ways to fight for quality of life.

One of the most unexpected breakthroughs came not from a drug or machine, but from a pair of lenses.

Losing the ability to communicate

As ALS progressed, Jacob eventually lost the ability to move his eyes. He could no longer blink, and his eyelids wouldn’t stay open. Severe dry eye followed, leaving his eyes painfully irritated and threatening to take away his ability to watch television, enjoy car rides, or even communicate. At times, his parents resorted to using cosmetic tape to hold his eyelids open. It was an exhausting, imperfect solution that underscored how fragile his remaining independence had become.

How scleral lenses help ALS patients retain communication longer

Enter scleral lenses. Traditionally used for patients with corneal disease or extreme dry eye, these specialized contact lenses are larger than normal and vault over the eye, creating a reservoir of fluid that bathes the cornea. Jacob’s care team at The Ohio State University had never tried them in someone with ALS before, but they were willing to innovate. Working with Dr. Stephanie Pisano and her team, including a dedicated resident, Dr. Shihij Takoo, Jacob went through multiple fittings to find lenses that worked. They had to account for astigmatism, depth, and comfort, making careful adjustments along the way.

The impact was immediate. With the scleral lenses in place, Jacob’s eyes could stay open and moist, protected from damage and discomfort. Combined with cosmetic tape, the lenses allowed him to keep his eyes open long enough to enjoy daily life again and, most importantly, stay engaged with the people he loves. His father calls the lenses “a blessing,” explaining, “I don’t know what we would do if it had not been for the scleral lenses. In a world where we had already lost almost everything, and we only had communication left, these lenses made sure we were able to hang on to this piece of dignity.”

Maintaining dignity

Communication is one of the cruelest battlegrounds in ALS. Before his eye paralysis, Jacob was lightning-fast on an eye-gaze computer system, astonishing his speech therapist with his speed. He could email, text, and even shop online almost as quickly as before his diagnosis.  In fact, it was almost as if his family could have regular conversations with Jacob. As his voice deteriorated, Jacob’s family connected with Bridging Voice, a nonprofit based in New York City, who assists ALS families with communication technology. They were put in touch with ElevenLabs, who uses clips of a person’s voice to create an electronic voice. Using videos, they created an AI duplicate that sounded almost identical to Jacob.

When he lost the ability to move his eyes, that option disappeared. Today, he communicates using a neuro-node system connected to his leg muscles. Though slower, it still allows him to share his thoughts and direct his smart home devices. Today, scleral lenses make it possible for him to keep his eyes open, protected, and moisturized, allowing him to interact with his environment and preserve the vital connection between his mind and the outside world.

For the Harper family, the lenses are more than a medical tool. They are a bridge. They have enabled Jacob to remain present in everyday moments, whether watching movies with his parents, listening to vinyl records, or taking long drives, where his father straps him into his beloved Mustang and takes him out on the open road.

ALS is a disease defined by relentless loss: the loss of movement, speech, independence, and time. But in Jacob’s case, scleral lenses hit the pause button, allowing him to maintain communication longer. They offer comfort, vision, and dignity in the face of one of life’s harshest challenges. And in doing so, they keep open a window to the world that would have otherwise closed too soon.

Learn more about Jacob’s journey at www.TeamJacobWV.org

09/13/2025 A New Carport for Jacob

 09/13/2025

Today was a beautiful reminder of what community looks like in action. Randy, along with five friends from our church, showed up with tools in hand and hearts wide open to help us build a much-needed covering for Jacob’s transfers from his room to our van. What they created is essentially a carport—tall, wide, and thoughtfully designed to shield Jacob completely from the weather. No more rain-soaked outings or scrambling to keep him dry.

The labor was going to be the most expensive part of this project, so having it gifted by friends was an incredible blessing. The materials were funded through a generous grant from Racing for ALS, and the final result couldn’t be more perfect.

Gratitude doesn’t even begin to cover it.

09/08/2025 Tracheostomy Change

09/08/2025

It has been 60 days since Jacob's last trach change. TOnce again, we called upon our friend, Jeremy Cobb, who has extensive experience in dealing with tracheostomies and has volunteered to come and do this change for us.

We elected to do it today with the help of Jeremy and Mark Toole. This change was again, the best yet! 
Jacob was completely at ease for this change and everything went fantastic. Even after the fact, his peak inspiratory pressure stayed down below 20 PIP and we experienced no issues whatsoever!

09/07/2025 Back on Glycopyrrolate

09/07/2025 

Controlling Jacob’s slobbers and excess saliva has been a challenge since stopping the Botox treatments. We elected to return to an old treatment, Glycopyrrolate. We started with .5 mg (a half pill) 3 times per day, but within a week, increased to 1 mg 3 times per days.

the 3 pills proved to be too much and the secretions became too thick for suction, so we backed it down to 1 mg Two times per day (morning and night).

this seems to be working nicely so far.

08/27/2025 Massage by Pam

 08/27/2025

After a small hiatus (due to personal issues), Pam returned today and massaged Jacob for a few hours. Sje said he still feels great, very little atrophy and muscle groups are still very much intact.

08/19/2025 Scary Movie Night

“Had a classic movie night with mom dad and Jacob the other night… he picked a spooky one, ‘Smile 2.’ We barely made it 40 minutes before he had enough and spelled out ‘Toy Story.’ Guess it’s back to the comfort of Buzz and Woody! 🤣🤣🤣”

08/09/2025 Wheelin' for ALS

 08/09/2025

Each year since Jacob’s ALS diagnosis, we’ve turned the trails into a beacon of hope. Jacob, a passionate Jeeper, lit the spark in 2022 with his vision for an off-road benefit ride. Unlike traditional walks, he wanted something everyone could join, even if they couldn’t walk. Our first ride raised $12,000 for ALS support. This year, on August 9th, we shattered records with $28,000. Scott Lloyd from Racing for ALS even gifted us the ADA-customized van we’d been using, a generous $90,000 gift. Through every twist and turn, our community keeps proving that together, we’re unstoppable.

07/29/2025 Havener Eye Institute

 07/29/2025

This was simply a follow up visit to Havener at OSU, Dr Pisano determined that the last set of lenses were perfect in doing exactly what they were designed to do. 

They scheduled Jacob for another 6 month follow-up. 

07/28/2025 TREATMENT #17 ION363 PHASE III #2

07/28/2025

Treatment #17! Everything went GREAT, blood work was good, although we ended up going down to the lab to have his blood drawn once again. 

We were able to use the AXON-R during the procedure, which worked flawlessly! I had to type Dr Kolb's question out on a computer, but the device displayed the questions perfectly and Jacob was able to answer without any hesitation. Doctor Kolb was a a different man. He was super exited about jacob's communication, responsiveness and alertness. He said he felt more strength returning! The treatment was perfect, but Dr Kolb actually hit a nerve when insterting the needle. This would prove to be very painful for Jacob for a few days And as with almost every injection, he had normal leg pain as well, which would persist through the Friday.

08/18/2025 Breaking Ground with the Axon-R

08/18/2025

On May 2, 2025, Jacob and I took a leap into the future with an exciting Teams call. Cole Heiner from Cognixion, all the way from their California office, introduced us to the Axon-R clinical trial. This isn't just any clinical trial. Jacob was chosen as one of only five people in the world to test a cutting-edge brain-control interface headset designed for communication.

The Axon-R, a brain-computer interface, or BCI, initially came with a hefty headset, but the weight caused Jacob's eyelids to droop, even with his custom scleral lenses designed to keep his eyes open. Realizing this, Cognixion adapted, swapping the headset for a lighter headband with electrodes along the back, paired with a Samsung Galaxy tablet. The headband was actually designed and created by my wife Barb, who did a tremendous job. She went through two or three iterations to get it just right, and Cognixion was extremely excited about the result. They will likely use it for other patients in the clinical trial.

Now, Jacob can engage with the Axon-R without the strain, as the tablet sits comfortably in front of him. We're in the midst of testing this breakthrough technology, hoping it paves the way for others like Jacob to communicate with ease. Each session, two or three times a week, is a step toward a future where technology and hope intertwine.

07/18/2025 No More Botox

 07/18/2025

We have decided to stop the Botox injections permanantly. In ALS patients with saliva issues, injections of Botox into the salivary glands, reduce slobbers and improve quality of life for approximately three months before needing repeated. Jacob's secretions will become increasingly difficult to manage, but we have elected to start using Atropine. 

• People with ALS often experience slobbers because they have difficulty swallowing saliva, leading to drooling. 
  Atropine's Role:
  Atropine, an anticholinergic medication, can help reduce saliva production by blocking the action of acetylcholine on muscarinic receptors in the salivary glands. 

• 
  

• Unlike Botox, there are very few "minor" side affects associated with Atropine, which is inteded to be used as an eye drop solution.

  
  
  

07/02/2025 Tracheostomy Change

07/02/2025

It has been 80 days since Jacob's last trach change. The plan was to go to OSU and see Dr Desilva for this change, But we have learned that our friend, Jeremy Cobb, has extensive experience in dealing with tracheostomies and has volunteered to come and do this change for us.

We elected to do it today with the help of Jeremy and Mark Toole. This change was the best yet! I believe part of the problem has been anxiety for Jacob. H
e was completely at ease for this change and everything went fantastic. Even after the fact, his peak inspiratory pressure stayed down and we experienced no issues whatsoever.

06/10/2025 PEG TUBE TROUBLE

 06/10/2025

Jacob's feeding tube pulled out this morning. His shirt was covered in blood. I deflated the balloon as flat as possible and reinsterted the tube. This bought us time to get to the hospital. 

The radiology department replaced it with a more streamlined Mic-Key button. We love this new design! So much easier for Jacob and us.

05/12/2025 TREATMENT #16 ION363 PHASE III #1 (#10 in Phase 2)

 05/12/2025

Treatment #16! Everything went well, blood work was good, although we ended up going down to the lab to have his blood drawn once again. 

Doctor Kolb once again expressed concern about jacob's communication, responsiveness and alertness.The treatment was perfect, as always!

And as with almost every injection, he had leg pain again, which would persist through the 16th (Friday).

05/02/2025 AXON-R

 05/02/2025

We had a Teams call with Cole Heiner from Cognixion today. The call was to determine if Jacob would be a good candidate for the clinical trial of the AXON-R (Augmented Reality) headset for communication. The call was a complete success and Jacob has been selected. Someone from the California or Canada offices of Cognixion will be bringing to us here in WV in the next 2 weeks! 

04/21/2025 Tens Unit = Finger Movement

 04/21/2025

Today, I made an interesting discovery. While using the 10s unit on Jacob's right hand I discovered he was able to move his fingers, specifically, his middle finger. The tens apparently provide the electrical current needed for Jacob to manipulate his own fingers!

04/14/2025 Tracheostomy Change

04/14/2025

It has been 65 days since Jacob's last trach change. I elected to do it today with the help of Mark Toole once again.This change was super easy, but Jacob still ended up sick. His peak inspiratory pressure (PIP), Which is normally between 17 and 19, shot up to the mid 20s again. It stayed this way for a few days. 

I think we may go to OSU and see Dr Desilva for the next change. Am concerned that Jacob Stoma has shrunk and the tracheostomy has become too large.

04/08/2025 Back on Botox

04/08/2025

Dr. Hollinger made the decision to begin the Botox injections again for Jacob. In ALS patients with saliva issues, injections of Botox into the salivary glands, reduce slobbers and improve quality of life for approximately three months before needing repeated. Since stopping this treatment, Jacob's secretions have become very difficult to manage.

03/27/2025 Stopped Glycopyrrolate

 03/27/2025

After our trip to the emergency room, it became evident that the glycopyrrolate is not the answer for Jacob's secretions. It did not lessen the secretions, it only made them thicker and more difficult to manage.

I discussed our decision with Dr Hollinger, and he agreed and elected to restart the Botox.

03/27/2025 Pneumonia / Levofloxacin

03/27/2025

This evening, we left home on our way to the ER with Jacob. Barb and I used a stethoscope to listen to Jacob’s lungs, and what we heard was truly alarming. Jacob was in tears, overwhelmed with anxiety. Even at the hospital, his heart rate stayed between 145 and 150 BPM. Despite our best efforts, his labored breathing and the secretions wouldn’t ease.

During the drive, we called our pastors and close friends, asking them to join us in prayer. In the van, we prayed together as a family, surrendering the entire situation to God and setting aside our own understanding. As always, God went before us, preparing the way to ease Jacob’s suffering and renew our hope. When we reached the hospital, the doctor couldn’t hear any issues in Jacob’s lungs. The x-ray revealed only a minor infection—easily treatable with a short round of antibiotics, Levofloxacin.

03/24/2025 Back on Glycopyrrolate

03/24/2025

Dr. Hollinger agreed to start Jacob back on glycopyrrolate (Robinul) for slobbers. Things are going great, But since halting Botox, the secretions have been very difficult to control.

03/11/2025 Dr Nusair Appt No More Tobromycin

 03/11/2025 

Telehealth appointment with Dr Nusair. He made the decision to permanently stop Tobromycin.

02/25/2025 Jacob's 26th Birthday

 02/25/2025

Jacob is 26 today! Thank you Jesus for allowing us to have him here with us still. Jacob continues to be a blessing and source of inspiration and hope in what God can do for those who trust and believe! 

02/21/2025 Marshall ALS Clinic

 02/21/2025

Today's clinic visit went very well. Dr Hollinger connected a portable EMG machine to Jacob's foot to witness his big toe movement. Additionally, he made the decision to suspend Jacob's Botox treatments for slobbers, citing a possible side effect, which could be directly causing Jacob's droopy eyelids and dry eye issues.

02/21/2025 Foley Catheter Came Out

 02/21/2025

Since we were due back at the hospital on today for Jacob's als clinic, we made the decision to wait until then to have the tube changed. This morning, the temoorary foley Catheter also fell out! Once again, I stuck it back in the hole and put a velcro elastic wrap around Jacob's midsection to keep it secure.  

Once we were finished with Jacob's als clinic visit, we headed over to the radiology department. They quickly got us in and changed it out to the correct MIC style tube.

 

02/20/2025 Stopped Tobramycin

02/20/2025

Today ended what should be our final 28 day tobromycin regimen. We are very happy to be ending this drug. Not only is it extremely expensive (thank goodness for our insurance) but it also carries with it a ton of side effects, some of which Jacob has been experiencing.

Difficulty urinating, eye irritation, kidney issues, diarrhea, fever, muscle weakness... 

There are so many more side effects, but these are the ones Jacob has experienced.

02/19/2025 PEG Tube Issues

02/19/2025 

It had been four months since we had Jacobs feeding tube replaced. Tonight, it just fell out! It appeared as if the balloon on the end had leaked and become flat. The feeding tube stoma can close within 24 hours , so I managed to slide the tube back in the hole to ensure it stayed open. It was a lot for him to endure, but after an already long week, we imediately headed to the Cabell Huntington Hospital ER. Unfortunately, the emergency room staff did not have access to the radiology department, forcing them to put in a temporary foley catheter, until we could return during normal business hours and have it changed properly. 

02/18/2025 Final visit at the Havener Eye Institute

02/18/2025

On this 2/18 visit to Havener at OSU, Dr Pisano determined that the fourth (last) set of lenses Were perfect in doing exactly what they were designed to do. She made a couple of very small changes and ordered a 5th set, which will allow us to have two good sets for alternating.

This was our final visit for lens fitting. Have scheduled Jacob for a 6 month follow-up. I had begun using double sided eye tape to help hold Jacob's eyelids open. This also seems to be working quite well.

02/17/2025 TREATMENT #15 ION363 (#9 in Phase 2)

02/17/2025

Treatment #15! Everything went perfect, blood work was good, although we ended up going down to the lab to have his blood drawn once again. 

Doctor Kolb expressed concern about jacob's responsiveness and alertness, but quickly dismissed this as soon as he saw Jacob's movements and ability to answer questions. We understand that these specialists are looking at Jacob from a scientific viewpoint, but there is so much more at play here than those numbers! Jacob had COVID in September, and unfortunately it affected his eyes, which affected his ability to communicate with his devices. This is a complication that Dr Pisano at the Havener Eye Institute is certain will rectify itself in time. Not to mention the fact that God is still in charge!

The treatment was perfect, as always!

And as with almost every injection, he had leg pain again, which would persist through the 21st (Friday).

02/08/2025 Tracheostomy Change

 02/08/2025

It has been 35 days since Jacob's last trach change. I elected to do it today with the help of Mark Toole, once again. I again following Dr. DeSilva's advice, I "flushed" the trach 3 times prior to making the change. 

This change was super easy, and probably the best one yet, but for some reason, Jacob still ended up sick. His peak inspiratory pressure (PIP), Which is normally between 17 and 19, shot up to the mid 20s, and even got as high as 30 at one point. It stayed this way for a solid week. Our medical professionals told us that this was not a terrible pip and that we should not be concerned. Still, after over a year of that pressure being a consistent 17 to 19, it was unnerving to see it in the 20s.

We would later learn that deflating the cuff with Jacob lying down flat was the reason for the issues. Moving forward, he will need to be sitting in a more upright position, to ensure I am able to suction everything out of his trachea all the way to the carina.

01/24/2025 Begin Tobramycin

01/24/2025

Our doctor told us he will likely take Jacob off of this nebulizer treatment in March. So this time should be our final round on this drug.

01/14/2025 Control Bionics "NueroNode"

 01/14/2025

Thanks to Sarah with Marshall University, we had a meeting today with Tricia McGee from Control Bionics. She was here to introduce Jacob to the NeuroNode.

The NeuroNode is a wireless, wearable sensor that gives Jacob the ability to access his technology by bioelectric signals or spatial movements. Unlike any other sensor, the NeuroNode uses the body’s EMG signals or 3D spatial awareness to give the user control. Individuals can access their computer, phone, tablet, and more with the NeuroNode.

Tricia was able to find several spots on Jacob's body, which will work with the device. 

Sarah has already sent us the computer that accompanies the node. We are wafting for Ins approval.

01/03/2025 Tracheostomy Change

01/03/2025

It has been approximately 45 days since Jacob's last trach change. I elected to do it today with the help of Mark Toole. Once again, following Dr. DeSilva's advice, I "flushed" the trach 3 times prior to making the change. 

The flush consists of deflating the inner cuff, while suctioning. Then reinflating the cuff and stop. Repeating this procedure three times. Doing this allows any excess buildup of drainage to run towards the lungs, while suctioning it back out. The whole point of this procedure is to keep Jacob from getting sick. Every time we've done this change, he has had a slight fever, with body aches and chills. He would be lethargic for a couple of days after every tracheostomy change.

The plan was to change this at 30 days following the manufacturer recommendation. Due to the holidays, we elected to wait until today. The change was still very difficult. It was a struggle to get the old tracheostomy out. Even with the cuff fully deflated on the outside, the inside balloon would not go completely flat. I gave Jacob the option to have this done by the doctor from now on, but he still prefers dad to do it. As of bedtime tonight, he was still not sick, so we pray this change was successful.