By Leila Okahata/Allen Institute

Monte Strohl made a mean grilled peach.

As an avid home chef, Strohl was always researching new recipes and frequently invited family and friends to taste test his latest kitchen creations. He carried a mental cookbook containing 500 recipes he’d memorized, including lasagnas, burgers, and crab cakes — all with a “Monte twist,” as his wife Diann Strohl described.

But between 2004 and 2005, when the Washington-based technology salesman was 52, the pages in Monte’s cookbook slowly unwrote themselves. He started having trouble remembering his favorite recipes, and his ability to read and write declined. Diann recalled a time when he had asked her how to spell a simple, five-letter word. She laughed and told him to look it up. But when he responded with frustration, she realized that something serious was going on.

To investigate Monte’s condition, the couple went to their local clinic in 2006, but his neurologist couldn’t identify what was happening. He was then referred to the University of Washington School of Medicine, where in 2008 he was diagnosed with primary progressive aphasia, a malfunction in brain cells that causes speech and language impediments. Slowly, he would lose his ability to read, write and speak.

Monte was also diagnosed with corticobasal syndrome, a rare brain disorder that causes the gradual degeneration of brain cells in areas related to movement and information processing. For example, Monte developed troubles using tools, Diann said. Instead of hammering the nail on the top, he would hammer it on the side.

Because of his rare diagnoses, Monte’s neurologist suggested he consider donating his brain to science — a contribution that would leave a part of his legacy in research labs to help scientists understand more about brain diseases like his.

He answered without hesitation.

“If he could help science or anyone in the future that was having a progressive neurological disease, he absolutely wanted to do it,” Diann said.

The brain donation process

Brain donation is not the same as organ donation. It’s a common misconception that if you check “organ donor” on your driver’s license application, that includes brain donation. But organ donation — giving organs like your kidneys or heart after death to someone in need of a transplant — is a separate process from brain donation — giving your brain to scientific research.

Since a donated brain doesn’t go directly to a living person, one may question the significance of the donation. But to C. Dirk Keene, M.D., Ph.D., Professor and Nancy and Buster Alvord Endowed Chair of Neuropathology at UW Medicine, brain donation is “by leaps and bounds the most incredible gift a person can give to science.”

Donated brains from people of diverse backgrounds provide scientists with the material to uncover the hidden workings of the human brain and to discover new therapeutic targets for neurodegenerative diseases like Alzheimer’s disease, Keene said. For example, the Seattle Alzheimer’s Disease Brain Cell Atlas (SEA-AD), a collaboration between UW Medicine, Kaiser Permanente Washington Health Research Institute and the Allen Institute, uses cells from 84 brain donors, including people at different stages of Alzheimer’s disease and people without dementia, to help identify how Alzheimer’s disease progresses and alters the brain. Findings from this study can lead to the development of therapies that better treat or prevent this too-common disease, Keene said.

So how and where do you donate your brain to science? Many brain donations come through research studies, Keene said. For example, federally funded Alzheimer’s Disease Research Centers and Keene’s Biorepository and Integrated Neuropathology (BRaIN) Laboratory run studies that accept brain donations from their participants. You can also enroll into programs like the Brain Donor Project, which connects potential donors with an appropriate brain bank. It’s best to find a local brain bank for the most effective coordination and performance of the donation; coordinators at these studies and programs can help find the best donation center for you, Keene said, and they might also suggest additional opportunities to participate in local or national research.

You also don’t need to have a diagnosed neurological condition to donate your brain; all kinds of brains are needed for research.

“We have many different things that we prioritize but protecting our donors and donor families is top among them. That includes being very respectful and cautious during the collection procedure and also in how that tissue is utilized and deidentified,” Keene said.

The consent form also provides instructions for the donor’s family on what to do when the donor passes away. For example, when Monte passed away last year, Diann was instructed to call the UW research team’s transportation company instead of 911, she said. Once notified, the transportation company will arrive as fast as possible, and they will take the deceased to a local facility where researchers collect the donated brain. After brain dissection and preservation, the donor is transported to the funeral home or crematorium of the family’s choosing. Ideally, this all happens within 12 hours to ensure optimal tissue integrity, Keene said.

“We try to minimize the burden to families. We try to make sure that there’s not a delay to services or an impact in any way,” he said. “Our goal is to be able to collect that donation as quickly as possible. The clock is ticking when a person dies so the quicker we’re able to collect the brain, the better it is for everyone.”

Over the next few months, a pathology report of the brain’s medical condition is produced: Any diseases found will be noted. If the family chooses to, they can request a copy of that report.

But studying a donated brain isn’t a one-and-done process; Keene said his lab has brains that were donated 30 years ago that are still being studied today.

“It really is a gift that keeps giving,” he said.

With that, he and his team are happy to keep long-term connections with donor families and to let them know what’s happening with their loved one’s brain. He is also eager to invite them into the lab to learn more about their loved one’s diagnosis and, if desired, to tour the lab and learn about the research being performed locally and nationally with these tissues.

“If the family is interested, I’m happy to show them the brain tissue from their loved one. That is something that has a lot of meaning for some families. It’s the least we can do to thank people for this gift,” he said.

A new chapter

It has now been more than a year since Monte’s death and brain donation, and this year is also his and Diann’s 48th anniversary. They met when they were both 16 in high school. Diann thought Monte was cute and so they started dating on and off — “mainly on,” she added — during school, moved in together at 19, and married at 20. Having met as teenagers and together ever since, they witnessed each other’s growth as individuals.

“We changed a lot over the years. But fortunately, we changed together,” she said.

Diann wishes brain donation had more widespread public awareness, adding that potentially doctors can be the ones to present the idea to their patients. A lot of people would be happy to donate their brains if they were asked, she said. For Monte, knowing he could help someone else was more than enough to sign the form. He was always a caring person, Diann said.

And a perfect father to their two children.

“He was a good listener, which helped him in sales but with those talents he could talk to our kids and make negative moments a learning experience,” Diann said.

Now in a new chapter of her life, Diann is looking to find who she is as an individual and wants to help people during these ever-changing times of the ongoing COVID-19 pandemic. Hoping to give back to those in need, she plans to volunteer at food banks and charities.

“Because at this point I feel lucky. I mean, I wish I had Monte. But I’m in a good place enough to where I can help others. So that’s what I’d like to do,” she said.