Family runs to shine light on son’s rare disease

BY MARC HARDIN | LINK nky CONTRIBUTOR

When Jenna Neduchal won 14 high school state championships in cross country and track and field at St. Henry, the Class of 2006 distance runner didn’t foresee herself running something like a half-marathon.

“I did trade running for sport for running after toddlers,” said the 35-year-old mother of two, who also ran at Northern Kentucky University. “I’m here to report that both are challenging and rewarding all at once.”

Running anything more than a couple miles was a nonstarter for Justin Neduchal, who played basketball, volleyball and tennis in high school, but never ran competitively.

“To be perfectly honest,” said Justin , 39, “I am not a huge fan of running.”

The Walton residents are both running half-marathons during annual Flying Pig events May 7 in Cincinnati.

So, what happened?

Well, they met.

In St. Augustine, Florida, of all places. At Flagler College by chance encounter.

“One of my roommates, Patrick Tierney, was friends with Jenna’s family. The Siemers were visiting the Tierneys in St. Augustine,” said Justin, a human resources senior manager at Lockheed Martin. “We met in 2003 and dated for a short time in 2006. Then we reconnected five years later and ended up getting married.”

They have two children, daughter Jovie, 7, and son Jace, 6. Jace was diagnosed with SHINE Syndrome in December 2021. SHINE Syndrome is an extremely rare neurodevelopmental disorder with 104 known cases in the world. Jace was the 54th known case. There are a handful of cases in Greater Cincinnati/Northern Kentucky. Another is 10-year-old Nolan Palmer, son of Nate and Laura Palmer of suburban Cincinnati. He was diagnosed with SHINE Syndrome in October 2017. Laura Palmer is founder and president of SHINE Syndrome Foundation.

Ideally, all of them would be participating at the Flying Pig to help raise awareness about the disability, but Jace isn’t quite ready.

“I would love for Jace to be able to participate,” Jenna said. “They have an event called PigAbilities which is a movement for inclusion that supports families and individuals with a disability.”

It’s a one-mile race that participants and their supporters can run or walk.

“It would be so amazing if Jace could participate in that one day,” Jenna said. “He has extreme sensitivity to loud noises, so we obviously want him to be able to enjoy himself. Our goal for Jace is to have a meaningful and fulfilling life, so we will always focus on what brings him the most joy.”

SHINE Syndrome, also known as DLG4-related synaptopathy, is characterized predominantly by what doctors call global developmental delay and intellectual disability of varying severity, including attention deficit hyperactivity disorder, autism spectrum disorder, epilepsy and hypotonia. Many individuals with SHINE syndrome also experience sleep disturbances, and skeletal and structural brain abnormalities.

It’s caused by changes in the gene DLG4, located on chromosome 17. DLG4 encodes the protein PSD-95, which plays a big role in brain development and function, which when altered can induce susceptibility to SHINE Syndrome. A single copy of the disease-associated mutation is enough to cause it. Most with SHINE Syndrome are found to have new variants in DLG4, which means the variant occurs for the first time in them and is not inherited from a parent.

“Jace did not stand until he was almost 2 years old. He never crawled,” Justin said. “He’s been in multiple therapies since he was 6 months old. He used to wear braces on his ankles to build strength, and now at 6 years old he’s running around with other kids.”

When the Palmers found out Nolan had it, it led to the creation of the SHINE Syndrome Foundation. Laura Palmer communicates with rare disease organizations and researchers, creates peer-to-peer connections with other rare disease nonprofits, writes grant applications and is active with fundraising. The board works to organize medical resources and plans with researchers, develops patient registries, raises funding for research and drives awareness of SHINE Syndrome among the medical community and in the general public. Justin Neduchal is on the board. He’s the director of fundraising.

“We will all be wearing neon pink shirts with our SHINE logo on it. And Nolan’s stroller will be wrapped in the logos of some of the local companies that have donated to SHINE through our Flying Pig fundraising effort,” Justin said. “The fact that Laura is pushing Nolan for 26.2 miles in one of the hilliest marathon courses in the country is a testament to her dedication to her son, this foundation, and her goal of raising awareness about SHINE Syndrome. My wife and I are running the half-marathon as part of a way to support Laura and Nolan. We’re part of the group starting the race together to help push him where we can before we break off to the half-marathon.”

Jenna ran the Flying Pig half-marathon for the first time last year.

“She is the backbone of our family, the main caregiver for our son. I was just inspired watching her train and then cross the finish line,” Justin said. “I rode a bike to find her during multiple spots, and I just bought into it and decided I’d run this year. That’s how it started. Then, when Laura had the idea to push Nolan, it sparked an idea in us to also do this in support of SHINE Syndrome awareness and fundraising.

Sallee takes over WaltonVerona volleyball program

After taking the 2022 season off from coaching, Katelyn Sallee has returned to the sidelines as the new Walton-Verona head volleyball coach.

Sallee coached at Highlands from 201421, guiding the Bluebirds to five straight 36th District championships and a 172-99 record. She won the Northern Kentucky Volleyball Coaches Association Coach of the Year three times during her tenure in Fort Thomas.

Sallee met with her new team on April 14 at the high school, listing her expectations such as constant communication, no gossiping, hustle, heart and an effort to attend every event. She said she believes it is imperative to fix issues as a team.

Sallee comes into a similar situation she found the Highlands program when she took it over in 2014. Walton-Verona has struggled the last two seasons, going a combined 15-42 including an 8-22 mark last year and has made the Eighth Region Tournament just once in the past four seasons.

Fort Thomas native Ordonez gets Guatemalan National team nod

FC Cincinnati soccer player Arquimides Ordonez has been called up to the Guatemalan under-20 national team as the country begins training for the 2023 U-20 World Cup that starts in May.

Ordonez is a Fort Thomas native who played club soccer throughout high school with Kings Ham- mer Academy and Cincinnati United Premier. His older brother Elias led Highlands in scoring his senior season in 2014.

Arquimides has been on FC Cincinnati’s roster since 2021, appearing in 13 games. He’s stood out on FC Cincinnati’s MLS Next Pro team, scoring four goals in two games this season and four goals in 13 games during the 2022 season.

He joined the FC Cincinnati Academy in the program’s inaugural 2019-20 season. He made a combined eight starts for the U-19 roster during the 2021 MLS NEXT season with three of those coming during the recent MLS NEXT Cup Playoffs. He was a big part in helping Guatemala qualify for the U-20 World Cup, scoring five goals in six appearances and was the only player in the competition to score in all three groupstage matches.

Five from NKY make Tom Leach All-Resilient Team

The Tom Leach All-Resilient-Team honors student-athletes from Kentucky high schools who have had to overcome some form of adversity to compete and often excel in sports, within the previous calendar year.

Tom Leach is the “Voice of the Wildcats” for the UK Radio Network, and the play-byplay announcer for football and basketball games.

Each year, Leach releases the student-athletes selected for the All-Resilient team. This year five NKY student-athletes made the list: Lloyd Memorial’s Jeremiah Israel, Scott’s Ava Coleman, Covington Catholic’s Blake Folke, Newport Central Catholic’s Vinny Petroze, and Bishop Brossart’s Robbie Verst.

Shortly after Israel was born, he and his siblings were sent to live with his grandmother because of drug issues with their parents. Israel eventually had to take on various jobs to help support his siblings, two of whom were diagnosed with autism. Through all this, Israel became a household name in Erlanger and he received a basketball scholarship to Northern Kentucky University.

After Coleman had two ACL tears during her high school career the doctor told her she may never play sports again. She would go on to earn All-10th region honors and all-37th district in both soccer and basketball. Not only that, but in the classroom Coleman was honored with Governor’s Scholars.

Between the seventh grade and his senior year, Folke underwent 11 major injuries. There were torn knee ligaments, two hip fractures, three broken clavicles, two wrist fractures, and torn labrum and a separated AC joint. Through all of those injuries, Folke maintained his positive attitude and supported his teammates–and achieved a GPA of 3.7 in the classroom. Folke is headed to the University of Alabama on an academic scholarship.

A simple cut on a leg suffered in a soccer match rocked Petroze’s world, after it was infected with a flesh-eating bacteria that put his life in jeopardy. His condition deteriorated quickly and there were multiple, daily surgeries needed to save his leg and his life. At one point, he was on a ventilator for two days but he recovered and endured one final operation to reconstruct the leg. Just 12 weeks later, he was back on the court with the basketball team at Newport Central Catholic, followed by baseball and soccer the next fall. In his first two years as a varsity starter in soccer, Petroze started every game and won a “more than a match” award along the way.

As a freshman, Verst suffered a broken back that sidelined him for that entire school year. As a sophomore, broken bones in both feet derailed his return to the basketball team and just after making it back for baseball season, he suffered a season-ending wrist injury. As a junior, torn ligaments in a knee ended his high school basketball career. As a senior, Verst decided to try and make the golf team despite never having played the sport. He succeeded, shot several rounds in the low 40’s, and helped his team win a 10th Region All ‘A’ title. Verst then developed a herniated disc, but he overcame that, too, and returned to the baseball diamond and got a hit and stole a base in his first game back.