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‘We could make it better’: Former patients hit the pavement to raise money for neurological research in Edmonton

The trails at Kinsmen park were full Saturday morning, with people out to raise money – and awareness – around life-saving research in Edmonton.

The Nerd Run brought out dozens of doctors, patients, researchers and supporters to walk or run in support of the University of Alberta’s Neuroscience and Mental Health Institute.

For Holly Frances and Rob Agostinis, crossing the finish line was extra meaningful. Both recovered from autoimmune disorders that drastically altered their lives and left them re-learning how to walk and talk.

“I went from being healthy to completely paralyzed, breathing on a ventilator in I.C.U,” Frances said.

Diagnosed three weeks after giving birth to her daughter, Frances spent three months in intensive care with a severe case of Guillain-Barré syndrome.

The potentially life-threatening condition caused her immune system to attack her peripheral nervous system.

“I was in I.C.U and my daughter was a newborn,” Frances said. “I couldn’t be the mom that I always wanted to be, and I couldn’t spend time with her during a time that we should have been enjoying our lives together.

“It was devastating, and it was heartbreaking.”

Agostinis also fell ill suddenly and without warning, while visiting his mother in B.C. two years ago.

“Within 24 hours I was a quadriplegic and placed on a ventilator,” Agostinis said.

Placed in an induced coma, he was transferred to the Neurosciences Intensive Care Unit at the University of Alberta.

“When I woke up, I realized I could not move at all, and I was very, very scared,” he said.

Agostinis suffered from what is known as anti-neurofascin syndrome. It’s an extremely rare disorder, with only 16 other people having ever been diagnosed.

He credits his medical team for finding a treatment that worked, and has helped him recover and get his life back.

“I didn’t think I could ever walk again,” Agostinis said. “And it’s thanks to all my physicians.”

“We have an excellent system here, we have an excellent team of neurologists, and we could make it better if we had more research into all these diseases,” he added.


Francis and Agostinis were both treated for their neurological disorders at the Neuroscience and Mental Health Institute.

However, a doctor there said there are many more kinds of patients that rely on the work done there, including those with multiple sclerosis, Alzheimer’s disease, depression and dementia.

“The institute at the [University of Alberta] is there for everyone,” said Dr. Dougal Zochodne. “We do need your help for the research, it’s tough times for research funding in Canada.”

“Unless you’re affected by the disease, there’s not a lot of funding out there because people are donating more for Cancer and the more known diseases,” Frances said.

Money raised at the run will support student researchers specializing in neurological disorders and their treatment.

Zochodne said it’s also an opportunity for those doing the research to see the results in person.

“It’s inspiration for everyone,” he added. The trainees in the lab may not have the opportunity to see how their work translates to people, what difference it might make and this is a really good example.”

Thanks to the institute, Frances and Agostinis were both able to take part in the run Saturday and they were glad to be able to help.

“I had to learn how to walk, [to] sit, to stand – and here I am. And I can walk now, I can climb stairs,” Agonstinis said. “We need to fundraise money to get research going. And that’s what’s really important. So I will be a Nerd runner for many years to come”

“I was in a wheelchair for a long time, didn’t know if I was ever going to recover,” Frances said. “So now, to be here, to be able to take part in the Nerd run and run 5k is so rewarding and it makes me really appreciate everything.” 

With files from CTV News Edmonton’s Jessica Robb

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