ALZ

Arizona researchers using Colombian village to research Alzheimer’s disease

Mar 15, 2017, 4:38 AM | Updated: Mar 16, 2017, 9:33 am
(Pexels Photo)...
(Pexels Photo)
(Pexels Photo)
LISTEN: Arizona researchers using Colombian village to research Alzheimer's disease

This is the third of a five-part, weeklong series studying how Alzheimer’s disease can affect you, no matter your age. Read the other parts here

PHOENIX — When a patient hears he or she has cancer or heart disease, there is often a glimmer of hope there might be a cure or a way to manage the diagnosis.

But, when that diagnosis is Alzheimer’s disease, the window of hope shuts tight. At least, until very recently.

When doctors diagnosed 86-year-old Richard Yavitt with mid- to late-stage Alzheimer’s, he was already 10 years on the decline and fit the scientific profile that one in three Americans over 80 would develop dementia.

His wife, Barbara, said he sleeps most of the day, and when he is awake, “he doesn’t always know who I am.”

Richard is fiddling with a large Rubik’s Cube.

“He likes the primary colors,” she said.

The former certified public accountant isn’t interested in solving the puzzle, but doctors working under one large umbrella here in Arizona are interested in solving his disease.

Specialists Dr. Edward Zamrini and Dr. Pierre Tariot at Banner Alzheimer’s Institute are just two of the hundreds of minds working collaboratively under the Arizona Alzheimer’s Consortium, a collaborative group of scientists from multiple arenas researching and treating dementia.

The two men are working on sister projects trying to get ahead of the disease with a specific premise.

“We had this idea that prevention research could be done,” said Tariot, who admits the idea was considered a little out there by industry standards. “Not many people believed in it, which is always a mark of a good idea.”

They remained optimistic, even though finding people who fit the prerequisite for participation in the study was less than 3 percent of the population.

First, they needed to identify people who definitely carried the Alzheimer’s gene, would live long enough to complete the study and, ideally, find them before they were ever diagnosed.

“We were struggling to identify people who were known to be at very elevated risk,” Tariot admitted. “We didn’t think we could find enough people.”

At the same time, 1,400 miles south of Phoenix, another team of scientists was discovering a very rare form of Alzheimer’s concentrated in a village near Medellin, Colombia.

A mutual friend and scientist connected Tariot with Dr. Francisco Lopera, who had found, “an extraordinarily large concentration of families that carry a genetic code that cause them with certainty to die in their 30s, 40s and 50s.”

What’s worse, he continued, “it will happen to half of their children.”

The discovery prompted Lopera and his team to scour centuries of Medellin church and hospital records.

“All of these families (traced) back to a single Spanish immigrant in the 1600s,” he said.

Because it was Medellin — a beautiful mountain village, isolated from most of the world — Tariot realized the families rarely migrated. From a scientist’s perspective, this tragic thread of life had a beautiful purpose.

“You’ve got this accidental laboratory for this very rare form of early on-set Alzheimer’s.”

His team met with the Colombian researchers and about 30 families agreed to participate.

Like any experiment, “It might or might not work,” he explained, and “they started nodding their heads and said, ‘We’re in!’”

“I still get goosebumps when I think about the first interactions with these families. It was humbling and inspiring how willing they were to listen, how thoughtful.”

Having found a 400-year-old single genetic mutation in the middle of the Colombian mountains was the proverbial needle in the haystack they needed to convince scientific, governmental and pharmaceutical leaders to take a chance and invest in their preventative Alzheimer’s theory.

“Let’s take people who have no trouble with memory and thinking, but are destine to develop symptoms of Alzheimer’s pretty soon,” Tariot proposed. “Let’s give them a promising experimental therapy and let’s see if we can stave off the inevitable loss of memory.”

The stakeholders agreed and set up a funding source to put Alzheimer’s research teams around the globe on the fast track.

The general consensus was, “Go big, or go home,” Tariot remembered vividly. The team set up the study’s infrastructure on a global scale.

With the U.S. government’s green light, a pharmaceutical giant’s support, and funding from global stakeholders, they set to work.

Under Tariot’s supervision, the Arizona team, “secured FDA-like approvals in multiple countries, helped set up technology, trained the Colombian research team on how to conduct the study, and supported them every step of the way.”

“We can now harvest the data and analyze it … and we’ve committed to make it available to the entire scientific community a year from now.”

This month, the enrollment phase was completed and the data collecting is now underway.

And, because the program has U.S. and global government funding, that data will not be withheld for commercial profit.

“We have an agreement with our industry partner that the data and the samples collected during this study will be shared with the entire scientific community.”

The clock is ticking and, in March 2018, that data will be released for the best and brightest minds around the world to work under an even greater umbrella and hopefully find a cure or a path to finally solving the Alzheimer’s puzzle.

“This is good,” laughed Richard, still holding his Rubik’s Cube, while reaching for another puzzle, “How about more stuff?”

Although the study may not help him in his late stages of Alzheimer’s disease, Zamrini believes it could help the next generations that follow.

“Even if we delay [Alzheimer’s disease] by about five years, it would make a significant impact because we would probably eliminate half the cases,” he imagined. “If we delay it by about 10 years, we would eliminate 70 percent or more.”

To learn more about Alzheimer’s disease and research being done here and around the world, visit the following resources:

Arizona Alzheimer’s Consortium

The Banner Alzheimer’s Institute

Barrow Neurological Institute

Translational Genomics Research Institute

University of Arizona Health Sciences Alzheimer’s Research

Arizona State University Bio Design Institute

Hospice of the Valley

Duet Partners In Health and Aging

The Alzheimer’s Association

Lifetime Windows & Doors

We want to hear from you.

Have a story idea or tip? Pass it along to the KTAR News team here.

ALZ

(Pexels Photo)...
Holliday Moore

How you can join the cause to help find a cure for Alzheimer’s

Studies in Arizona and beyond require many more participants who want to volunteer in helping to find a cure for Alzheimer's.
6 years ago
(Kayla Wolf/Missourian via AP)...
Holliday Moore

Caring for loved one with Alzheimer’s disease weighs heavy on caregivers

While more than five million Americans in the U.S. are living with Alzheimer’s, another 15 million are sacrificing their own lives to care for them.
6 years ago
(Flickr/Borya)...
Holliday Moore

Arizona doctors work to shed stigma of Alzheimer’s disease, speed up diagnoses

Nearly every minute in this country someone is hearing the words: “You have Alzheimer’s disease" and experts fear it could become a trillion-dollar monster by the year 2050 if it is not stopped within the next decade.
6 years ago
(AP Photo/Matt Rourke)...
Holliday Moore

Alzheimer’s disease could become trillion-dollar health care crisis in US

Alzheimer's disease is among the top five killers in Arizona and economists are predicting the malady will soon become a trillion-dollar health care crisis.
6 years ago
...
Wayne Tormala

Epidemic rising? What you need to know about Alzheimer’s in Arizona

This article is Sponsored by Arizona Department of Health Services. At some point, most people have watched an older family member struggle with memory loss or other forms of dementia. As a result, people often incorrectly assume all people will succumb to similar issues as they approach old age. Many also falsely believe all memory […]
6 years ago
(AP Photo)...
Holliday Moore

Alzheimer’s in Arizona: There is hope on the horizon for patients, caregivers

Government leaders and the medical community have hope for the future of Alzheimer's patients and their caregivers.
7 years ago

Sponsored Articles

...
Day & Night Air Conditioning, Heating and Plumbing

Prep the plumbing in your home just in time for the holidays

With the holidays approaching, it's important to know when your home is in need of heating and plumbing updates before more guests start to come around.
...
Quantum Fiber

How high-speed fiber internet can improve everyday life

Quantum Fiber supplies unlimited data with speeds up to 940 mbps, enough to share 4K videos with coworkers 20 times faster than a cable.
...
Children’s Cancer Network

Children’s Cancer Network celebrates cancer-fighting superheroes, raises funds during September’s Childhood Cancer Awareness Month

Jace Hyduchak was like most other kids in his kindergarten class: He loved to play basketball, dress up like his favorite superheroes and jump as high as his pint-sized body would take him on his backyard trampoline.
Arizona researchers using Colombian village to research Alzheimer’s disease