Research institute built by “City of Volunteers” achieves international acclaim

May 30, 2006

By hammersmith

“Welcome to the City of Volunteers,” reads the sign at the entrance to Sun City, where row after row of small, one-story houses with manicured lawns, low walls, and evenly spaced citrus trees line the streets. Through the streets the elderly steer their golf carts and few, if any, teenage drivers can be found. This is a place, as many Arizonans will tell you, that is unlike any other in the Valley.

Sun City, a master-planned retirement community founded in 1960, has one of the world’s most concentrated geriatric populations, according to CenterWatch, a clinical trials listing service. The average age is 72, with around 1,500 residents over the age of 90.

When Dr. Joseph Rogers, an Alzheimer’s disease researcher, visited this city more than 20 years ago, he looked around at the homes and the golf carts and set his eyes on a remarkable opportunity.

As people age, their chances of contracting crippling diseases and developing disorders like Alzheimer’s and Parkinson’s disease, arthritis, prostate cancer, and pancreatic cancer increase dramatically; for example, according to the Alzheimer’s Association, Alzheimer’s affects 1 in 10 individuals over 65, and nearly half of those over 85.

That means that Sun City, with its large elderly population, is likely to have a remarkably high (if not the highest) concentration of Alzheimer’s, Parkinson’s, prostate cancer, and pancreatic cancer.

Rogers was the first research scientist to turn his attention to this community when, in 1986, he left the University of Massachusetts and Harvard’s National Alzheimer’s Disease Research Center to found the Sun Health Research Institute (SHRI) in Sun City.

The institute, resting in the shadow of the much larger Sun Health Boswell Hospital system, looks like just another research center. But a closer look—beyond the place, to the people inside—reveals something more extraordinary: SHRI is not just a place for science; it is an internationally recognized institute that has built its success upon a reciprocal relationship between dedicated scientists and an extremely generous community.

It is a community-based research center that understands both its history and its purpose today, as an institute extending its reach beyond the walls of Sun City and its influence across the bioscience landscape in Arizona and throughout the world.

“What we want is for the patient to live a longer life with dignity, a quality of life with dignity,” said Dr. Alex Roher, senior scientist and head of the Napolean M. Longtine Center for Molecular Biology and Genetics.

When Arizona’s Bioscience Roadmap laid out a ten-year plan on how Arizona could become a national and international leader in niche areas of the biosciences, it listed as Strategy One the need to build the state’s research infrastructure. Strategy Four, the Roadmap went on to report, was to “encourage the state’s citizens to become a more informed citizenry in the biosciences.”

Since founding the institute, Rogers has made Strategy Four his number one priority, and all his scientists today continue to do so as they also focus on developing that critical research infrastructure.

“This city might be one of the most unique resources the Arizona bioscience community could offer to the world,” said Dr. Tom Beach, senior scientist and head of the Dr. W. Harold Civin Laboratory of Neuropathology.

Homegrown Research

The idea for Sun Health Research Institute began more than 20 years ago with a vision championed by Sun Health Boswell Hospital’s first CEO, W. Austin Turner, its board chairman at the time, Dr. Haakon Bang, and an early medical staff leader, Dr. Baird Horton. They wanted a research institute committed to studying age-related diseases.

The nonprofit hospital system faced formidable obstacles, including a lack of institutional funding for such an enterprise. If research was to be done, it would need support from the community, and it would need scientists willing to take a risk on the fledgling institute, said Pamela Meyerhoffer, chief executive officer for the Sun Health Foundation.

Meyerhoffer, who helped spearhead the campaign to establish SHRI, said people were initially skeptical that the community would be willing to invest in research that would not benefit them immediately. But once hospital officials reached out to the community, the skepticism abated.

“They were saying that while what’s discovered may not help me, it will help future generations,” she said. “They captured the universality of it maybe even before we did. “They were excited by the thought that as these discoveries are made, they wouldn’t just help the people who built this institute but everyone everywhere.”

To build the institute, Sun Health recruited Rogers, a well established Alzheimer’s researcher on the East Coast and an assistant professor at University of Massachusetts Medical School.

“He had to really have a lot of faith and confidence in the possibility of Sun Health Research Institute in order to make it happen, because he came to nothing,” Meyerhoffer said.

In terms of funding and buildings, there really was nothing for Rogers when he came to Sun City in 1986. His first office was in an abandoned building, and his first lab bench was a plastic fold-up table borrowed from the hospital cafeteria. But Rogers says that did not matter to him because Sun Health offered him something incredibly valuable: a community like no other that he could tap into for research.

“You can do great aging research at Harvard or Johns Hopkins in theory, but without the subject population it really becomes difficult,” Rogers said. “Here we have a community that is not only generous but enthusiastic about participating. And they participate at every level: Every piece of equipment and furniture, every inch of the walls and floors represents the charitable contributions from the community.”

After meeting with Rogers in 1986, Cleo and Bob Roberts, two prominent members of the Sun City community, latched on to his vision of improving the quality of life for the elderly. They gave Sun Health Foundation its first donation of $750,000 to get the institute off the ground.

“It’s the baby I never had,” said Cleo, who has, along with her late husband, donated millions of dollars to the clinic. “It’s done so much for Alzheimer’s research. I’m just proud to see how far it’s come.”

The Roberts’ donation was a turning point for the institute, which, along with its Arizona consortium partners, is now listed as one of only 29 Alzheimer’s Disease Core Centers in the nation. With the Roberts money, SHRI was able to renovate an old office building and convert it into laboratories. From there, Rogers began to build his institute, modeled after one of his former employers: the Salk Institute for Biological Studies.

“The Salk Institute is an ideal place and culture and environment to do science—everything there was really geared towards making the science happen,” said Rogers, who is a recipient of the prestigious Lifetime Achievement Award in Alzheimer’s Disease Research from the National Alzheimer’s Association. “And that’s the way we are here.”

Alex Roher moved to Sun City in 1995 because he saw SHRI as a place where he could tap the community and focus solely on science with no teaching responsibilities. Since then, he has co-published a major paper linking cerebral arteriosclerosis (hardening and thickening of arterial walls) to Alzheimer’s.

Dr. Yong Shen, head and senior scientist of the Robert S. Haldeman Laboratory for Molecular and Cellular Neurobiology, recently published groundbreaking findings that show the molecular mechanisms by which a toxic molecule called amyloid peptide may be overproduced in a brain with Alzheimer’s.

When asked what attracted him to SHRI, this leading Alzheimer’s researcher replied simply, “Scientific freedom and minimal bureaucracy.”

Engaging the community

SHRI’s operating budget is run almost entirely on grant money. This year it has an active grant total of $30 million, including a $7.6 million award from the National Institutes of Health on behalf of the Arizona Alzheimer’s Disease Consortium and its partners.

“The scientists here are entrepreneurial scientists,” Rogers said. “They don’t look at science as an entitlement; they look at it as an opportunity to go out and get the funds they need.”

The money SHRI raises through grants must pay for just about everything except buildings and equipment. That, in part, is why the community involvement is so important to the institute. The volunteers save the scientists thousands of dollars.

“I triple my volunteers’ salaries every year!” Rogers said.

Sun Health’s retired medical chief of staff volunteers as a physician in the institute’s clinic once a week. Three retired Ph.D.s volunteer in Roher’s laboratory, and two of them have published more papers in their retirement hours at SHRI than they did while working in the universities or industry.

Perhaps the greatest volunteer, Roger says, was Dr. Harold Civin, a retired pathologist who joined Rogers in starting SHRI’s brain bank that today has become world-renowned for tissue quality and availability and is expanding into a full-body tissue repository.

Scientists who study the common age-related diseases such as Alzheimer’s and Parkinson’s face a stark challenge. These disorders are uniquely human and in order to study them, researchers need tissue collected as close to life as possible before the process of decay alters the organs and their chemicals.

Despite the obstacles, SHRI has managed to build one of the world’s best brain banks, shipping tissue to nearly every continent in the world.

“More than 2,000 people in the northwest Valley—without any advertising or financial inducement at all—have enrolled in our tissue bank,” Rogers said.

When Rogers first arrived in Sun City, he desperately wanted to start a tissue donation program, but he lacked a board-certified pathologist to run it. Then fate intervened.

In the early days of the Institute, Rogers spent a lot of time speaking to the community. At one point he found himself at a church lecture lamenting the need for a pathologist. As Rogers finished the lecture and prepared to leave, Civin approached him.

“Not only am I board-certified,” he told Rogers, “I’m bored, period. Just give me an office and a microscope. I’ll do the job for you.”

Civin ran the program for the next ten years of his life until the onset of Parkinson’s forced him to retire as a volunteer.

By the time Civin donated his brain—his final gift to the institute—the tissue donation program, under his watch, had reduced the time between death and autopsy to an average of 2.5 hours. It is the shortest port-mortem delay in the world.

“The next closest place is maybe 8 hours or 12 hours,” Beach said.

To keep the time so short—to make the science happen—all the scientists pitch in and help. At some point during their career at SHRI, everyone is on call 24/7 to retrieve a donor’s body, even if the death occurs in the middle of the night.

“The only way you’re going to get a short post-mortem delay reliably and consistently is by spreading the responsibility out over many people,” Beach said. “So we have three rotating team captains who are on call one month out of every three. The technicians and scientists are supposed to help by being on call one month every year and a half.”

This dedication seems to be a character trait of the SHRI scientists. Many of them leave leading universities from around the world to work in Sun City and focus exclusively on the science. To that end, they will help collect the tissue and reach out to the community they need to do research.

“You see, here we are not only using financial resources from the community for the benefit of Alzheimer’s disease research, but also the human asset,” Roher said.

For her research on fibromyalgia (a debilitating condition characterized by muscle, joint, or bone pain, fatigue, and other symptoms), Dr. Dianne Lorton, who left a pharmaceutical startup to become senior scientist and head of the Robert J. Hoover Center for Arthritis Research, is now out in the community recruiting donors for the whole-body donation program.

Just last month Dr. Jeffrey Joyce, senior scientist and head of the Thomas H. Christopher Center for Parkinson’s Research, gave a lecture on Parkinson’s that attracted more than 180 people.

“We believe we have a responsibility to communicate what we are doing, but it also builds a rapport with the community that just won’t quit,” Rogers said.

Giving Back

Because the community helped build the institute, Rogers will tell you, the institute has a responsibility to give back to it.

“We exist because of this community, and we exist for this community,” he said. “The community made it possible, and we accept that trust that they have given us, and we are dedicated to finding medical breakthroughs that will benefit them as well as others worldwide.”

That is where the relationship between Dr. Marwan Sabbagh, director of the Cleo Roberts Center for Clinical Research, and Dr. Larry Sparks, senior scientist and head of the Dr. Ralph and Muriel Roberts Laboratory for Neurodegenerative Research, comes in.

Just six years ago, Sabbagh arrived at SHRI at the age of 34 to build a clinical program from scratch that now is expanding to twice its size, in a second three-story research building currently under construction.

A few days into his job, Sabbagh met Sparks. The two worked together closely to develop a new model for clinical research that eliminated the boundaries between the bench and the bedside. Sparks takes his discoveries into the clinic and follows them closely, and Sabbagh is very involved in the science of it all.

“You want to understand the science, what the genesis of it is,” Sabbagh said. “And when you know the idea, you see that ‘wow, that’s really important.’ Then you take ownership in seeing that the studies get done right.”

“Normally, I would not be allowed to do what I do,” Sparks added.

Nine years ago, Sparks arrived in Sun City with a major discovery in tow. While at the University of Kentucky, he had found a connection between cholesterol and Alzheimer’s, and realized that cholesterol-lowering drugs could potentially stop the progression of Alzheimer’s. But his research went nowhere—and Sparks wanted to test it out.

“Kentucky was a candy store for basic research,” he said. “I saw this as an environment that might be a candy store for clinical research. Half a million people over 55 years of age, sounds pretty interesting. At Kentucky, I suspected that Lipitor therapy could slow the progression of Alzheimer’s. It wasn’t until I got here that I started testing drugs in the laboratory to see if lowering cholesterol really worked.”

Rogers explained, “We empower our Ph.D.s to take their discoveries into the clinic. And that’s what Sparks did. Entrepreneur that he was, he went to Pfizer and got placebo and Lipitor and money to run a trial.”

The trial was small, with only 60 people, compared to the traditional 600.

“But everybody down to the last person says it was done correctly, it was done in a rigorous manner, standardized approach, good methodology, good statistical analysis—every litmus test, we passed it,” Sabbagh said. “So we weren’t big, but we were right. And so we try to do good science, rigorous science.”

Rogers agreed. “In my view, it’s the most successful trial in Alzheimer’s disease that’s ever been done. It’s going to turn out to be the most effective treatment we have yet for combating Alzheimer’s.”

Sparks, Sabbagh, and other SHRI investigators published their results last year and the article set off a wave of trials trying to duplicate their results.

“One hundred million dollars is being spent replicating what we did. And we did it all by ourselves. It was our baby,” Sparks said. “That’s the most attractive part about it. It was our science, it was our trial; it was our baby. And now because of that, we’re doing other people’s work.”

SHRI’s clinical trial program is on the receiving end of cutting-edge Alzheimer’s treatments being discovered around the country. It is considered a premier program that ranks among the most storied East Coast clinics such as those at Harvard and Johns Hopkins. Most of the country’s major clinical trials are conducted in Sabbagh’s clinic, and SHRI is often one of the only sites in the West with access to the latest medical treatments in their early stages.

One study, called the “third generation vaccine study,” is only being run in six sites in America. SHRI is the only such site west of the Mississippi.

“We’re part of all of the major clinical trials,” Sabbagh said. “We’re not on the outside; we’re in the circle that makes a difference. So a vice president of a company will call us and say, ‘Hey, Marwan, we want you to do a clinical trial.’ They know all about us.”

While Sabbagh is running other trials, he still remains closely connected to the other SHRI scientists. Sabbagh and Sparks are planning a number of other projects together, and they hope their work will ultimately culminate in a large-scale, six-year prevention trial.

“Marwan and I are now a team,” Sparks said. “Everything that I come up with now, he is part of in some way or another. If it’s going to work, you’ll see us cross the finish line together.”

Rogers will tell you another hallmark of SHRI’s success is the extensive collaboration that goes on among the scientists.

“We work together here,” Rogers said. “And that creates synergies that make our collective impact ever so much greater than the sum of our individual efforts.”

For more information:

Sun Health Research Institute

SHRI profile on CenterWatch