For Jeff Carroll, Huntington’s disease is not abstract. It killed his grandmother and mother, and as a carrier of the gene mutation himself, he knows he will one day develop it too.

So he made it his life’s work.

“I’ll be thinking about it anyway,” Carroll, an investigator at the Seattle-based Allen Institute, told As It Happens host Nil Köksal. “I might as well do something useful with all this anxiety.”

Carroll, 48, is helping lead the Brain Health accelerator, an international research initiative announced Tuesday that aims to improve understanding of how brain diseases develop and advance treatment options.

Based at the Allen Institute, a non-profit bioscience research centre, the project brings together researchers from around the globe to tackle neurological diseases including Alzheimer’s, Parkinson’s, Huntington’s, Lewy body dementia and ALS.

It is backed by a $400 million US investment, including $200 million from the Allen Institute, $100 million from the family of Amazon founder Jeff Bezos, and $100 million from Amazon Web Services, National Institutes of Health and EverythingALS.

The initiative aims to shift away from traditional neuroscience research that relies heavily on animal models, and instead prioritize studies on human tissue in the hope of producing findings more relevant to human disease and more quickly translated into therapies.

“All diseases deserve treatment and research,” Carroll said. “But what’s especially horrible about these diseases is that they really strike at the core of who we are as people.”

Carroll said he has experienced signs of Huntington’s, but is not yet suffering from the disease.

He watched the disease gradually erode his mother’s ability to work, keep her temper and communicate effectively.

“Our brain is the seed of all of those things,” Carroll said.

Dr. Michael Hayden, a Huntington’s disease researcher at the University of British Columbia and Carroll’s mentor, said the impact on families can be severe.

“It’s a devastating disease, and it really robs you of your humanity,” he said. “The cycle of destruction in families feels like a black cloud threatening to smother them.”

UBC’s Centre for Molecular Medicine and Therapeutics is home to the HD Biobank, which Hayden said is the largest collection of postmortem Huntington’s disease tissue.

With more than 300 donated brains available for study, it shares biological samples with researchers around the globe, and those samples could be used by scientists with the Brain Health accelerator.

Carroll said decades of research have still not produced effective treatments for many neurodegenerative diseases, in part because limited access to tools and technology has slowed efforts to approach them in an addressable way.

He said researchers have retreated into model systems using cells or mice, with low success rates in developing new therapies.

“We have cured many, many mice of Huntington’s disease, Alzheimer’s and Parkinson’s, but none of that has translated into humans,” Carroll said. “We have to admit collectively that we haven’t been doing it right.”

Carroll’s path into Huntington’s research began in Hayden’s lab at UBC.

“He came to me initially knowing that he carried the mutation for Huntington’s disease, and wanted to join the lab to try and do something to develop new approaches,” Hayden said.

Hayden said he hesitated before bringing Carroll into the lab because of the emotional stakes.

“I thought about it a lot because it’s quite complicated,” he said. “What happens if we’re not successful? What happens if he’s not able to achieve his goals? How will he cope with this?”

After speaking with Carroll, Hayden said he was satisfied that he was “resilient” and “committed,” and brought him into the lab.

Researchers involved with the Brain Health accelerator aim to expand scientific understanding enough to begin human trials by 2031, and Carroll said he expects to be part of that effort.

Over the years, he has taken part in numerous observational studies as both a scientist and a person living with the Huntington’s gene mutation.

Hayden said the project’s goals are ambitious, but moving from treatment identification to regulatory approval can take 10 to 15 years and cost up to a billion dollars.

“We have to be very cautious about raising too much hope,” Hayden said. “But we need to be hopeful … that we can make insights that in the long run will identify new targets for treatment.”

Carroll and his wife, Megan, also took part in a trial of preimplantation genetic diagnosis, an in-vitro fertilization procedure that screens embryos for Huntington’s mutation before implantation.

In 2005, Carroll’s twins became the first successful commercial preimplantation genetic diagnosis births in British Columbia. Neither inherited the gene mutation for Huntington’s.

While Carroll said advances such as preimplantation genetic diagnosis can stop the disease being passed to future generations, they do little for people currently carrying neurodegenerative genes, like him.

“We owe this generation our best work towards a cure,” he said.

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