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.”
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. Laura has hit her goal and I’m about $1,200 short.”
Meanwhile, Jenna gets to pursue her lifelong passion.
“My favorite thing about running is how it’s both an individual and team effort and Justin taking this on with me is a reflection of that,” she said. “Being an example that we can overcome hard things and being that example for our kids.”
To help the organization reach its goal, donations can be made at shinesyndrome.org. Click on Take Action in the upper right corner of the web page.
“Awareness is so important, because it’s easy to say things like American Lung Association or the American Cancer Society or Red Cross, and people know exactly what you’re talking about and are willing to donate,” Justin said. “When I say SHINE Syndrome, I have to follow that with a lengthy explanation of what it is, how there are only 104 cases in the world, how we need money to fund research. We’re just not at the point of getting enough attention to bring in large donations that are really needed to make an impact for this community.”