JACKSONVILLE, Fla. — In memory of her brother, a Jacksonville resident is taking significant steps to bring attention to a little-known disease.

Daniel Hopkins lost his life to neurodegenerative brain iron accumulation (NBIA), an uncommon inherited disorder characterized by iron accumulation in the brain.

At birth, Daniel appeared to be a healthy baby. However, as he grew, his family began to notice alarming changes. Kairstin Quigley shared with First Coast News how quickly these changes became apparent as he aged.

However, as he started to get older, his sister, Kairstin Quigley tells First Coast News things began to quickly change

“About five years old, he started having regressions,” said Quigley, “He was losing muscle weakness in his legs.”

“Then from 10 to 11 he was wheelchair bound,” she said.

Daniel was diagnosed with neurodegeneration brain iron accumulation, NBIA. it’s a rare genetic disorder, characterized by extra iron buildup in the brain, which damages the nervous system.

“From 10 to 21 he went downhill really, really quick,” said Quigley.

First Coast News first covered Daniel back in May 2014, when Middleburg High School brought his graduation to his hospital bed.

Sadly, Daniel died one month later at the age of 21.

“Most kids and patients with that disease do not make it past 11 to 12 years old, so we were fortunate to have this extra 10 to 11 years with him,” said Quigley.

A decade later, Daniel’s sister, Kairstin is still keeping her brother’s memory alive, but also raising awareness about his rare disease

For the first time ever, she’s teaming up with the Superior Empire auto club to raise awareness and money for research into NBIA.

“It’s very foreign to me because until her, I’d never even heard of it,” said Hank Church, Co-Founder of Superior Empire, “Cancer is always talked about and this should be too, especially as aggressive as it is.”

On Saturday, November 1st the NBIA auto show will be held at St Anastasia Catholic Church. There will be food trucks, raffles, trophies and even a Scooby Doo Mystery Machine in Daniel’s honor.

“We’re gonna have pamphlets out there for people who want to know about the disease, and we’ll have Kairstin out there talking about it,” said Peter Gunston, Co-Founder of Superior Empire. 

Turning loss, into legacy.

“That’s how this show came about because there’s such a shortage of research and funding,” said Quigley. “I just want to do whatever I can to help find a cure.”

“I’m almost positive this will be something we do every year,” said Church, “This is definitely the start of something.”

The NBIA auto show is Saturday, November 1, at St Anastasia Church in St Augustine, from 9 a.m. – 2 p.m.

General admission is $25 and all proceeds go towards research to find a cure for NBIA.