Tennessee Family Hosts Walk for Son With Rare PKAN Disease

When Austin and Halley Scott learned last spring that their son Nathaniel had PKAN, a rare terminal neurological disease, they made a choice: turn heartbreak into action.

Next Saturday, February 28 at 1 p.m., the Charleston, Tennessee family is hosting a Walk for a Cure at Hoyt Berry Park. The event aims to raise funds for PKAN gene therapy research while bringing their community together for Rare Disease Day.

PKAN progressively takes away mobility, speech, and independence from those it affects. With only one to three people per million diagnosed worldwide, research funding remains critically scarce.

But the Scotts aren't waiting for someone else to find answers. They're fighting for Nathaniel and every family facing this diagnosis by creating their own momentum.

Sunny's Take

What makes this story shine isn't just one family's determination. It's how they've made space for their entire community to be part of the solution.

The walk will feature live music from Madelyn Tallent, waffles from Batter Axe Waffles food truck, and a petting zoo courtesy of MB Produce & Farm. It's more than a fundraiser; it's a celebration of community coming together when it matters most.

Every dollar raised goes directly toward gene therapy research that could change the trajectory of PKAN. For rare diseases like this one, community-funded research often provides the spark that leads to breakthrough treatments.

The Scotts are showing what's possible when families refuse to face impossible diagnoses alone. Community members can register for the walk or learn about sponsorship opportunities by emailing natesnationna@gmail.com.

Sometimes hope looks like a finish line, a waffle truck, and a town that shows up.