Local family working to cure dementia nearly 10 years after father’s death

PITTSBURGH — A family who lost their father to a rare form of dementia is telling their deeply personal story to Channel 11.

It’s a story about Don Jameson and his battle with frontotemporal dementia. Jameson was in his 60s at the time.

The husband, father and grandfather was ready to retire.

But his kids, Hayley and Matt Jameson, noticed personality changes and extremely out-of-character behaviors.

After several years the official diagnosis came — frontotemporal dementia.

“It just breaks your heart; it just breaks your heart,” they said.

The Jamesons knew they wouldn’t be able to stop their father’s disease from progressing. They say the pharmaceuticals he was taking seemed to be making things worse, but they wanted to prevent another family from experiencing this horrible disease.

They created the Clear Thoughts Foundation.

“Ultimately what we’d like to do is raise enough money to fund the discovery of a drug that would treat or prevent dementia. Until we do that, our mission is not accomplished,” they said.

In 2013, seven years after his diagnosis, Don Jameson passed away. It was Christmas Day.

“We all said at the time, it was the best Christmas gift one could receive,” his children said.

The Clear Thoughts Foundation funded a consortium of the brightest minds at the University of Pittsburgh to work together to find a cure.

“A collaborat(ive) cohort that brings together not just researchers but practicing clinicians, neurosurgeons that all have expertise in the dementia field,” Cait Fenello, the executive director of Clear Thoughts Foundation, said.

“We’re talking about, fantasizing about clinical trials — what is it we’re going to do, how will our work impact and help humans. That’s a really exciting part of working together,” University of Pittsburgh Medical Center’s neurological surgery chair, Dr. Robert Friedlander, said.

“That has really guided the more basic science research I do in my lab: thinking more in the clinic setting and applications for therapies, to develop therapies and developing therapies for the disease,” UPMC assistant professor of the department of neurology Dr. Amantha Thathiah said.

The team agrees that, with their synergy, 1+1+1 is more like 100.

“From the basic sciences to the development of possible interventions, to implementing a trial, which is my part of this relationship, it works really well,” Dr. Oscar Lopez, the director of the Alzheimer’s Disease Research Center, said.

For Hayley and Matt Jameson, their work is for their dad — and so families don’t lose entire generations of wisdom and memories.

“I made my mother and father a promise I would fight the terrible disease for the rest of my life, and that’s what we’re doing.”

Download the FREE WPXI News app for breaking news alerts.

Follow Channel 11 News on Facebook and Twitter. | Watch WPXI NOW