01/02/2026
Landon’s League Foundation 2025 Year-End Update
The 2025 year was a whirlwind year from a personal, professional, and organizational standpoint. Dating back to 2018, LLF hosted an annual fundraiser but we postponed our 2025 efforts for a few reasons - a change of ownership at the golf course where our tournament has historically been held, selling our first house, moving into a new house, and starting new jobs (to name a few).
Not to be outdone, Landon threw his card into the mix in the waning days of 2025. After showing signs of pain and difficult nights, we unfortunately found out that he needs surgery on his right hip—the same grueling surgery he previously underwent on his left hip. This happens due to his dystonic muscles pulling the femoral head away from the pelvic socket despite our best efforts with muscle relaxers, regular Botox, physical therapy, and using his stander daily.
A few days after receiving this news, he contracted a bacterial pneumonia 🩻 from an unknown source resulting in sepsis, hypoxia (decreased blood oxygen levels), hypotension (decreased blood pressure), and hypothermia 🥶 prompting a trip to the ER, ambulance 🚑 ride, and overnight stay at St. Louis Children’s Hospital ICU. Fortunately, after transitioning to a step down unit, we were able be discharged just hours before midnight to have the best New Year’s Eve Party 🍾 fast asleep in our beds after a whirlwind 48 hours. Dick Clark’s Rockin’ New Year’s Eve festivities couldn’t hold a flame to our party!
That’s the glass 1/2 empty news…BUT HERE’S THE GREAT NEWS! Our collaborative CAMSAP1 research endeavors have reached the point we’ve been waiting for since 2018!
In 2025, we tied up “loose-ends” (so-to-speak) by answering a big question that remained unanswered and even highly debated within our own research team from our initial CAMSAP1 publication - does Landon have a partially functioning CAMSAP1 gene? Our brilliant research team at Nationwide Children’s Hospital (Ohio) discovered that there is indeed a partial functioning CAMSAP1 gene within Landon - inherited from his father (paternal inheritance). This was validated by a fascinating newer genetic analysis process known as “RNA-Seq” [RNA Sequencing] and confirmed by Western Blot Analysis that was conducted on the stem cells we created several years ago from Landon’s blood draw at WashU. This process also discovered that Landon’s maternally inherited CAMSAP1 gene mutation underwent a process called “nonsense mediated decay” - simply meaning there was no evidence of any partially functioning CAMSAP1 gene in Landon from his mother. With this information, the Undiagnosed Diseases Network (UDN) at The University of Alabama—Birmingham Center for Precision Animal Modeling ultimately and successfully created, validated, and shipped the mouse model with Landon’s exact paternal CAMSAP1 gene mutation to our research team at Nationwide Children’s Hospital.
In 2018, as you may recall, we initially created a CAMSAP1 mouse model by knocking out the entire CAMSAP1 gene. These initial “founder mice” had one normal copy of CAMSAP1 and one abnormal/fully knocked out CAMSAP1 gene. After several rounds of breeding, we unfortunately found that all of the affected mice embryos that would have both fully knocked out CAMSAP1 genes would not survive birth. This is what led to the debate about whether Landon (and the other affected children) had a partially functioning CAMSAP1 gene.
Now, under the hypothesis of needing a partially functioning CAMSAP1 gene to survive, our research team at Nationwide Children’s Hospital will breed the two mouse models together - the full CAMSAP1 deletion with Landon’s paternal deletion - with hopes of creating viable mouse models with Landon‘s exact CAMSAP1 mutation.
Okay, so we have 2 mice, and you’re probably asking yourself, ‘What is so exciting about that?’ Well, here’s the exciting part…
When we started Landon’s League Foundation in June 2018, our goal was to create a gene therapy in 10 years knowing drug/therapeutic developments typically take 20 years or more. We met with a gene therapy expert at WashU in May 2018 who said, “If you make a mouse model, I’ll make the gene therapy, and rescue the mouse. Then, if all goes well, I’ll pitch it to my contacts at the FDA to start clinical trials”. Very “Field of Dreams-esk”!
We didn’t meet our 10 year goal…we beat it! On 11/04/25 (the day after our 12th wedding anniversary), we introduced our research team at Nationwide Children’s Hospital to the gene therapy expert WashU who we initially met with 7.5 years ago and who agreed to start making a CAMSAP1 gene therapy 🧬💉! Once it is created, the CAMSAP1 gene therapy will be shipped to Nationwide Children’s Hospital to treat the affected CAMSAP1 knockout mice 🎉!
We are obviously excited and we thank everyone who has believed in and/or supported us since we started this process. To continue our fundraising efforts (and in hopes to avoid rain) we have moved our annual golf tournament to early June. Please join us on Friday, June 5, 2026, as our annual “Land-On The Green” Golf Tournament ⛳️ will be returning and at The Quarry at Crystal Springs Golf Club in Maryland Heights, MO. Sponsorship opportunities available and registration is now open for your team on our website!
