Florida family creates dementia research program honoring their late father

Author: AMY OSHIER Writer: Matias Abril
Published: Updated:

Dementia currently affects more than 55 million people in the world, with the number of cases expected to grow in the coming decades.

A local family hopes to drive change by helping researchers better understand the brain. The program honors their father, who died from the progressive brain disease. 

Gene Armentrout was a people person and a loving father and husband, according to Tish Hevel, the founder of the Brain Donor Project.

“He could engage anyone, and he really enjoyed it,” Hevel said.” He sort of felt like, you know, that’s, that’s what we’re here for, to do what we can for each other and with each other.”

In 2014, after years of trying to get the correct diagnosis, he was diagnosed with Lewy Body Dementia.

“We noticed some changes in his behavior, and he seemed to get he’d like to walk with his dog,” Hevel said. “And he seemed to get lost a little bit at the beginning. So we knew there was some kind of cognitive decline underway.”

Despite the disease, Gene was in good spirits until the end and decided to help others.

“He was already going to be a body donor,” Hevel said. “So we knew he would love the idea of contributing to the science moving forward. So we made arrangements to donate his brain for neuroscience research, but at the time, it was complicated.”

Brain Donor Project

In memory of her dad, Trish Hevel launched the Brain Donor Project. The goal is to help people navigate the complex process of getting tissue into the hands of people who will use it for scientific study. 

“When people come to brain donor project.org, we have them fill out a pretty simple intake form that’s all online,” Hevel said. “And then from that, we decide which of the brain banks makes the most sense for that person. It’s largely geographic, but some of the brain banks have different areas of focus or different areas of decline.”

In the eight years since Gene’s passing, more than 18,000 people have signed up to donate brains to research. 

Understanding dementia

Advances in technology are helping scientists better understand dementia and other brain disorders, but it requires post-mortem tissue.

Dr. Wendy Bond is with the Neuropsychiatric Research Center in Fort Myers, specializing in Alzheimer’s Disease. 

“What we do here is that we try to figure out what kind of proteins are involved with the Dementia, there’s a whole camp that thinks that these amyloid proteins in the brain cause dementia,” Dr. Bond said. “And then there’s a camp that thinks that tau proteins are involved with Dementia, which you find both in the brains of people who have been diagnosed with Alzheimer’s Disease.”

“We want to see the amyloid in the brain we want to see the tau in the brain and correlate them to the pet scans that they had previously when they were living,” Dr. Bond said.

This center is involved in trials to find drugs that will remove the plaques that lead to brain wasting. Being part of cutting-edge research, Gene’s family confirmed his diagnosis and hopes their dad’s brain will lead to a more significant body of knowledge.  

“it’s not going to be that many generations until we know more about the genetic underpinnings of these diseases,” Hevel said. “And at that point, that’s going to be real valuable information for his kids and grandkids to have.”

Hevel believes her dad would have wanted nothing less than helping others in life and death.

The brain donor program, which is based out of Naples, feeds into the NeuroBioBank, which is part of the National Institutes of Health. 

The NIH is responsible for public health research.

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