Matt's ALS Journey

10/22/2026

Mention this fundraiser all day Lunch or Dinner at Torchy’s in Rogers! 15% of your purchase will go to the ALS Association!!

10/05/2026

Matt Update — 10/5/26 🤍

We went up to KC yesterday for Matt’s clinic appointment this morning.

I wish I had a better update, but unfortunately, Matt’s breathing test didn’t go as well as we had hoped. His number was significantly lower this time than it was at our last visit in June, and our neurologist was a little concerned about the drop. He recommended that Matt start wearing a specialized breathing machine at night. The goal is to give his breathing muscles a much-needed rest while he sleeps so that we can hopefully protect them and preserve their function for as long as possible.

Other than his breathing score, everything else was pretty standard. We have been noticing some stiffness in Matt’s legs, which can make it more difficult for him to walk at times. Dr. Varon explained that this is from spasticity in the muscles of his legs rather than muscle weakness. We’re going to try a specific muscle relaxer to help with this and, hopefully, make it a little easier for Matt to get around.

Matt is also now at the 24-week mark in the drug trial he is participating in. In December, everyone in the trial will move to actually receiving the drug. So, if Matt has been receiving the placebo up to this point, he will be guaranteed to receive the drug starting in December. We are really looking forward to that.

Thank you all so much for your continued love, prayers, and support as we navigate this terrible disease. It truly means more to us than we can put into words. 🤍

06/26/2026

Hello everyone! It’s been a busy month for our family.

Immediately after the ALS Walk, Matt, Emily, Rick, and I headed to Kansas City for Matt’s regular three-month appointment. This is when his care team evaluates his condition and determines whether there has been any progression of his ALS symptoms.

Overall, the appointment brought both encouraging news and a few subtle changes. Matt’s breathing score, which measures lung function, was stronger than it was at his last visit. He had noticed some weakness in his left arm, and the doctor confirmed that change during the examination.

During his speech evaluation, Matt also mentioned that he had noticed some slight changes in the way he pronounces certain sounds. The changes are very subtle, and unless you spend a lot of time with Matt, you probably wouldn’t notice them. As is often the case, these changes become more noticeable when he is tired.

Thank you for your continued encouragement and support. We are so grateful to have you alongside us on this journey.

06/15/2026

On Saturday, we participated in the Northwest Arkansas ALS Walk. This was our first in-person event since Matt’s diagnosis last year, and we were completely overwhelmed by the support and sense of community we experienced throughout the day.

Thanks to the generosity of our friends, family, and supporters, our team raised $8,700 for the ALS Association, and the event raised approximately $68,000 overall.

We are incredibly grateful to everyone who came out to support our family. Your encouragement, kindness, and generosity mean more than words can express.

We'll be sure to keep you updated as new opportunities come up to support Matt and the ALS Association. Their foundation continues to provide vital resources and hope for families like ours, and we are so grateful for your ongoing support as Matt navigates this journey.

Thank you for standing with us in the fight against ALS. 💙

06/02/2026

Happy 36th birthday, Matthew! Lots of celebrating with family and friends!

05/08/2026

Hi Everyone!

We would love to invite everyone to Join Team Smish for the Walk to Defeat ALS

We’re walking with a Mission for Matt by walking with community, strength, and beside those we love through the fight against ALS. 💙

Come join Team Smish on:

📅 June 13
⏰ 9:00 AM
📍 Osage Park — Bentonville, AR

Whether you walk, donate, order a shirt, or cheer us on, your support means everything. Let’s come together as a community to raise awareness, honor those impacted by ALS, and show Matt and so many others they do not walk alone.

The form below will close on 5/13 so we can get shirts ordered for the walk! Pricing,pickup, and registration information is included in the form.

“I can’t carry it for you… but I can carry you.” 💙

Thank you for Supporting Mission for Matt in the Walk to Defeat ALS. To join Team Smish and register for the walk please click here: Team SMISH Registration Please complete the form below to order a shirt for the walk! (Shirts are Comfort Color Tees) Pricing: Venmo or Cash will be accepted on the da...

04/19/2026

Hello everyone,

We’ve been back to KU’s Medical Research Center twice this month and have an important update to share. Matt is officially enrolled in the HEALY ALS Platform Trial, and this past Thursday he received his first dose of the study drug!

He is potentially receiving a drug called NUZ-001 ((S)-monepantel). This medication is designed to stimulate a natural process in the body called autophagy, which helps clear out waste products in cells. In ALS, this process can be impaired, leading to a toxic buildup that contributes to motor neuron damage. NUZ-001 works on a pathway inside cells (mTOR) that helps regulate how proteins are made and recycled. The hope is that by improving this process, it can prevent harmful buildup, protect motor neurons, and ultimately slow or stop the progression of his ALS symptoms.

There is a 3 in 4 chance that Matt is receiving the active drug and a 1 in 4 chance of placebo. We are encouraged by those odds and remain hopeful.

The study will last 36 weeks and includes a combination of in-person and virtual visits. We truly believe participating in research like this is important—not just for Matt, but for the entire ALS community.

It’s been incredibly eye-opening to learn more about how these trials work and what it takes to bring them to life. We feel very fortunate to be part of this effort.

We’ll return in 4 weeks for the next follow-up and will continue to keep you all updated. Thank you all for your continued support!

*The photo is Matt having his first ever ECG. This was one of the tests they did to make sure he was a candidate for the trial.*

03/02/2026

We traveled to Kansas City last night for Matt’s ALS clinic appointment this morning. Matt’s parents came with us, and last night they treated us to dinner at 1587 Prime, the new steakhouse opened by Patrick Mahomes and Travis Kelce. It was such a special way to spend the evening together.

This morning we started the day at University of Kansas Medical Center meeting with the clinical trials representative. He shared some really encouraging information. It looks like Matt will be eligible for the Healey & AMG Center for ALS Platform Trial. We are incredibly excited about this opportunity and are planning to enroll as soon as possible.

Next, we saw his respiratory specialist. They perform breathing tests at each visit since lung function is a major concern with ALS. We’re so thankful that Matt’s numbers were great today.

We then met with Dr. Varon, Matt’s neurologist. We discussed any new symptoms or changes since our last visit, and he performed a physical exam to evaluate Matt’s major muscle groups. I’m happy to report there were no major changes today!

Our last appointment was speech. They monitor closely for any bulbar symptoms or speech changes. She noted a very mild change, but nothing concerning at this time.

Overall, it was a really positive visit. We’re grateful for good reports and hopeful about Matt’s involvement in this new clinical study. We’ll share more as we move forward.

02/24/2026

Welcome to Matt’s Journey! 💙

​We wanted to start by saying a huge THANK YOU to everyone who has followed this page so far. Seeing this community come together to support Matt as he navigates life with ALS means more to us than words can say. This page will be our home for sharing updates, milestones, and ways you can help.

​What’s next for Matt?
Many of you have asked how he’s doing and what the plan is. Matt has an upcoming appointment at the ALS Multidisciplinary Clinic in Kansas City, which is a huge part of his ongoing care.

​What happens at an ALS Clinic?
Unlike a regular doctor’s visit, clinic days are intensive. Matt will spend several hours meeting with an entire team of specialists all in one place, including:

​Neurologists to monitor progression and medications.

​Physical & Occupational Therapists to help with mobility and equipment.

​Speech & Respiratory Therapists to support his breathing and communication.

​Nutritionists & Social Workers to ensure he has every resource he needs.

​These visits happen every 3 months to help us stay proactive and prepare for any changes before they happen. They are long days, but they are vital for ensuring Matt gets the best care possible.

​Stay Tuned!
We will post an update here after his appointment to share what we’ve learned and what our next goals will be. In the meantime, please feel free to share this page with others who know Matt. Your thoughts, comments, and support are the fuel that keeps us going!

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02/21/2026