VO LU M E 29 IS SU E 2 2 015

WE ARE DEEPLY GRATEFUL FOR YOUR SUPPORT OF MAYO CLINIC. Thank You! mayoclinic.org/give

IN THIS ISSUE

The Whole Person Serious medical conditions aren’t just those that are life-threatening. All too often at Mayo Clinic, we see conditions that take away people’s ability to participate in the activities that give their lives meaning and purpose — jogging in the park, reading a book, volunteering at church, playing with grandchildren, eating a favorite meal — or their ability to participate fully in their chosen job or profession. When people are struck with these unforeseen limitations, they become, understandably, scared and worried about the future. Where else will I get enjoyment from life? What else will I lose? Will life ever be normal again? Mayo Clinic physicians and researchers understand that a healthy life is about more than just longevity. It’s about fulfilling the whole person and enabling each individual to pursue his or her interests and passions. In this issue of Mayo Clinic Magazine, you will read stories about how Mayo’s approach to whole-person care restores lives. For instance, when Laurel Mohan developed a fistula along her digestive tract, she feared she would never swim or paddleboard again, activities that connect her to nature and give her peace. But six months after receiving an exciting new stem cell therapy, she was back in the lake. Tommy Archer also feared for his future. When he was diagnosed with prostate cancer, he had to give up his life on the race car circuit, where he drove and coached. But after successful treatment and close monitoring using the most advanced screening techniques available, Tommy is back behind the wheel.

Mayo Clinic’s whole-person approach is probably best seen in the story of Andre Pearson. When he came to Mayo Clinic, it didn’t look like he had much longer to live — his heart and kidneys were failing. Even after an innovative surgery fixed him up, members of his care team still weren’t satisfied that they’d done all they could for Mr. Pearson. His daughter was soon to be married in California while he sat in the hospital. So, his caregivers developed a plan to fly him to the wedding, accompanied by a Mayo Clinic physician assistant to help with dialysis and monitor his condition. As a benefactor of Mayo Clinic, you make such stories possible. You enable the research and the whole-person approach to health that restores people to lives that have meaning. On behalf of Mayo Clinic and the people we serve, I thank you for your generosity and for your support.

Michael Camilleri, M.D. Executive Dean for Development Atherton and Winifred W. Bean Professor Professor of Medicine, Pharmacology and Physiology, Mayo Clinic College of Medicine Mayo Clinic Distinguished Investigator

Volume 29, Issue 2 2015

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FEATURES

Back in the Race. . . . . . . . . . . . . . . . .

6

After a Fight for His Life, Tommy Archer Is Back in the Race

The Kid, the Legend and the Ball

. . . . . . . . . . . . . 10

Iron Horse’s Legacy Lingers at Mayo Clinic Through Donation

Back in the Water. . . . . . . . . . . . . . .

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14

A Condition Forces Laurel Mohan Out of the Water — A Cure Puts Her Back In

20

Investment in Humanity. . . . . . . . .

20

Russ and Kathy Van Cleve Ensure the Greatest Good for the Most People

Proton Beam 360º. . . . . . . . . . . . . . .

28

Mayo Clinic Proton Beam Therapy Revolves Around the Patient

Better Than a New Bike. . . . . . . . .

32

Millions of Samples From People Like You, Help People Like You 38

Toughing It Out. . . . . . . . . . . . . . . . . .

38

Vincent Naimoli, Who Fought to Bring Baseball to Tampa, Faces Down a New Challenge

Breathe Deeply. . . . . . . . . . . . . . . . . .

42

Mayo Clinic and United Therapeutics Are Teaming Up

Sylvia’s Lemonade Stand. . . . . . .

48

One Little Philanthropist Raises Money for Molecular Research

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48

UPDATES

YOU ARE... . . . . . . . . . . . . 4 The Campaign for Mayo Clinic

Unraveling . . . . . . . . . . . 31 the Mysteries New Center for Biomedical Discovery Focuses on Basic Science

47

Artificial Intelligence . . 4. 7 Gets Real Focusing the Power of IBM’s Watson on Helping Patients

Old Drug or New?. . . . 52 Determining Which Drug Works Better for Which Patients 52

Not for the World. . . . . 54 Attending His Daughter’s Wedding Meant Everything

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Volume 29, Issue 2 2015

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UPD ATE CAMPAIGN FOR MAYO CLINIC

YOU ARE …

THE CAMPAIGN FOR MAYO CLINIC Since its launch in 2010, YOU ARE … The Campaign for Mayo Clinic has made a remarkable impact on patients and the future of health care at Mayo Clinic and beyond. Benefactors like you are directly responsible for these major achievements. Thank you!

Essential Facilities Because of you, Mayo Clinic has built the infrastructure needed to deliver the health care of the future. In June, we started treating patients with proton beam therapy at the newly opened Richard O. Jacobson Building in Rochester, Minnesota (see story page 28), and in 2016, we will open an additional proton beam facility at Mayo Clinic’s campus in Phoenix to serve patients in the Southwest. Read the stories on pages 19 and 32 to see how your support built both the biorepositories facility critical to individualized medicine and the Human Cellular Therapy Labratory, which is manufacturing human cells into therapeutic drugs.

Critical Research You are helping launch the country’s first late-phase clinical trial using stem cells to strengthen heart muscle after a heart attack. (See story on page 20.) You have also helped develop an at-home test that is revolutionizing colon cancer screening. And last year, Mayo Clinic made global headlines when a patient in a clinical trial who had cancer throughout her body went into complete remission after being treated with a reengineered measles virus. All of this and so much more are thanks to your campaign support.

Educating Tomorrow’s Leaders Visionary benefactors are the reason Mayo Medical School can pursue its vision of establishing a national

4 Mayo Clinic Magazine

presence with speed and purpose. A critical component of realizing this vision is the launch of a medical school campus at Mayo Clinic in Arizona, slated for 2017. The school is also incorporating tools that help doctors-intraining see how their approaches to care fit into the larger health care system. This understanding will help future doctors improve how care is delivered, not just to their individual patients, but to all patients.

Ensuring Mayo for Future Generations In recent years, doctors around the country have found themselves increasing patient volume while managing to reimbursement. But Mayo Clinic feels strongly that the unhurried exam is best for patients as it allows them to absorb information and ask questions. With benefactor campaign support, Mayo Clinic launched a pilot program exploring how endowment could protect doctors’ time. Based on its success, endowing the practice for future generations is now a major priority of the campaign and Mayo Clinic.

Strengthening Long-Term Financial Security Thanks to generous benefactor support and a solid investment strategy, Mayo Clinic achieves significant yearover-year growth in our endowment. This growth provides financial security and allows innovation to flourish to further strengthen patient care.

Your gifts through the campaign have transformed patient care and helped launch: ■■

The Center for Individualized Medicine — bringing genomic discoveries to patient care

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The Center for Regenerative Medicine — delivering stem cell advances that harness the body’s ability to heal itself

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The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery — improving patient care quality, value and outcomes at Mayo Clinic and beyond

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The Proton Beam Therapy Program — providing cutting-edge options in cancer treatment

Thank you for your support that has enabled Mayo Clinic to accomplish so much during YOU ARE … The Campaign for Mayo Clinic. We look forward to sharing even more success stories as we enter the final two years of our initiative to raise $3 billion by Dec. 31, 2017. With your continued engagement and partnership, we will make our vision of creating a new world standard in health care a reality.

CAMPAIGN RESULTS 3,500 $3B GOAL 3,000

PUBLIC LAUNCH

$ MILLIONS

2,500

2,162

2,000

1,679

1,500

1,176 832

1,000 500

347

0 JAN. 1, 2010

2010 2011 2012 2013 2014 2015 2016 2017

Fundraising includes cash/pledges, irrevocable and revocable commitments. All years as of Dec. 31, unless noted.

Volume 29, Issue 2 2015

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After a Fight for His Life, Tommy Archer Is ...

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ommy Archer is a force to be reckoned with. He won his first race at Brainerd International Raceway one day after graduating from racing school. Since then, he’s won more than 40 championships. One time, while testing a new car, he crashed and broke four ribs in three different places. Within three weeks he was strapped back in, holes cut out of the driver’s seat where his ribs would normally touch, and competing. “I couldn’t lift a newspaper, but when I was buckled into the seat, I could steer,” Tommy says. The first lap another racer slammed into him, flattening a tire. He limped into the pits and came out roaring — 125 miles later, he took the checkered flag. But in 2012, an aggressive form of prostate cancer threatened not only his racing, but his life. “You hear ‘cancer’ and the first thing you think is that you’re getting a death sentence,” he says. At first, the cancer responded to treatment, but when Tommy went off the medicine, his prostatespecific antigen levels began to rise — the cancer was coming back. Doctors suggested he take the drug again, something he would probably have to do the rest of his life.

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“It’s easy to say you should go on this medicine or that medicine,” Tommy says. “It subdues the testosterone, but it also subdues you. It puts you in a funk. You’re just not you.” Doctors gave Tommy the option of letting the cancer grow and then going in after it surgically, but they worried that once the beast was out of the cage they might not be able to contain it again. “I have faith in you doctors,” Tommy told them. In January, doctors in the Mayo Clinic Cancer Center used Choline C-11 to pinpoint Tommy’s cancer. Choline C-11 is an imaging agent that can detect recurrent prostate cancer much earlier than other imaging techniques. Choline C-11 Injection uses a radioactive form of the vitamin choline, which cancer cells readily absorb. Clinicians inject a small amount of the agent into a patient’s vein and then use a positron emission tomography (PET) scanner and computer to see where the agent collects. The result is a detailed map of a person’s cancer. The Food and Drug Administration approved Mayo Clinic as the first institution in the U.S. that can manufacture and administer Choline C-11 Injection. The technical name for the compound is 11C choline. The 11C denotes that a carbon atom has

been made radioactive and has a half-life of 20 minutes, which means for every 20 ticks of the clock the agent loses 50 percent of its efficacy. Its short lifespan means 11C choline needs to be made for each individual patient and administered within minutes of its creation. Using the technique, doctors found a marble-sized tumor in Tommy’s lymph node. When they removed it in March, it was already the size of an egg. The surgery worked, and Tommy’s next scan showed no signs of cancer. When he got the news, Tommy went and sat next to a statue of Will and Charlie Mayo, where he “prayed and thanked God along with the Mayo brothers for their vision to help save people’s lives and make their lives better.” On July 5, Tommy raced for the first time in a long time. At 60, he’s decades older than a lot of his competitors — “They call me Dad,” he jokes — but he’s just as fast. He took second, missing the checkered flag by 0.001 second. “I don’t think I ever felt I’d race again,” Tommy says. “I feel like I’ve been given a new lease on life.” n

“I don’t think I ever felt I’d race again. I feel like I’ve been given a new lease on life.” — Tommy Archer

The MRI scan doesn’t identify the smallest prostate cancer sites as abnormal.

In the choline-enhanced PET, they are clear enough to be properly diagnosed.

The

Kid Legend Ball The

And The

IRON HORSE’S LEGACY LINGERS AT MAYO CLINIC THROUGH DONATION

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ob Tierney connected with Yankees legendary first baseman Lou Gehrig instantly. “We hit it off,” says Bob, now 91 years old. The advice the Iron Horse gave the 15-year-old changed his life. The year was 1939. Bob would come to the fields just south of Mayo Clinic in Rochester, Minnesota, to hit and play catch with the American Legion team, a group of young men in love with the game but with long odds of making a career out of it. Gehrig, too, was looking for the game he’d spent a lifetime mastering. Gehrig was eager to find local players in Rochester when he asked the hotelier, who pointed the Yankees legend to the same fields that Bob and the rest of the boys occupied. Gehrig had just ended his record-setting 2,130 consecutive game streak because of puzzling, debilitating symptoms. He lingered at the fields during his time in Rochester, watching and waiting for Mayo Clinic’s formal diagnosis. “He couldn’t stay away from baseball,” Bob says. Bob remembers mustering up the courage one day to ask for Gehrig’s autograph on a special ball an uncle had given him. It was Gehrig’s 36th birthday, and Gehrig had to cradle the ball in his left arm because he was losing the function of his hands. After watching Bob play, Gehrig suggested Bob switch positions. After all, Bob’s left leg was “gimpy” by his own admission and second base is a tough spot for all but the rangiest of athletes. Later that day, Gehrig would receive his diagnosis — amyotrophic lateral sclerosis (ALS), a neurodegenerative disease without a cure. The disease carries his name to this day.

Marty Tierney and his father, Bob Tierney, show off the ball Gehrig signed in 1939.

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For Bob, ALS Strikes Even Closer Bob took Gehrig’s advice and transitioned to the mound despite also missing a thumb on his throwing hand. He parlayed it into a 22-year career in amateur leagues and the minors. While Bob never pitched to players of Gehrig’s caliber in his own career, he gained a much deeper connection to the Hall of Famer nearly a half century after he died. In the mid-90s, Bob’s wife, Geraldine, was diagnosed with ALS. “Gehrig died in 1941,” Bob says. “My wife got the damn thing, and she died from it in 1999.” ALS is a type of motor neuron disease that causes nerve cells to gradually break down and die. There is no cure, but Mayo Clinic is currently conducting two clinical trials that use stem cells to treat the disease. (See “A New Hope in the Fight Against ALS,” facing page.)

Giving Back Back to the ball. Andy Chafoulias, a developer based in Rochester, Minnesota, was looking for a way to teach his 11-year-old daughter, Taylor, the importance of giving. Andy had gone to school with Bob’s son, Marty, and they figured out a plan to donate the

Gehrig ball, which was also later signed by another Yankee, Leo Durocher, to Mayo Clinic. “I thought it was very special that Marty’s family has held this ball for 75 years-plus, and when he and I discussed what to do with the ball and do something positive, not only for our local community but for Mayo Clinic, it just made sense to purchase the ball and donate it back to the Mayo Clinic,” Andy says. “I’m trying to teach my daughter how to give back to communities and to be blessed for where we are in our life and to help others in need. “ALS is a serious, serious disease that needs a lot of research. And after she and I had a long discussion, she felt good about it, and I thought it was important that we both did it together as father and daughter.”

The Ball in the Hall Meanwhile, the ball continues to hold a special place in the Tierney family’s legacy. Bob is one of a handful of people still alive who spent time with Gehrig in Rochester and calls the interactions one of the highlights of his life. Mayo Clinic Heritage Hall Director Matt Dacy says the ball is one of the only known Gehrig artifacts from the Hall of Famer’s time in Minnesota that stayed in the original owner’s hands for more than 75 years. Thanks to Andy and Taylor’s donation, the ball is part of the Mayo Clinic archive and historical collection, joining artifacts such as the Nobel Prize medallion for the discovery of cortisone, letters signed by U.S. presidents to their Mayo Clinic physicians, and films depicting top-secret World War II research on the G-suit and highaltitude mask. The ball will be displayed in a future exhibit in Heritage Hall, scheduled to open in 2016. And Bob couldn’t be prouder of the ball’s humble beginning. “I’ve had it ever since I was a 15-year-old kid,” Bob says. “I had no idea that it would ever come to something like this.” n

Gehrig’s Adopted Community Gehrig’s advice to local ballplayers was just one of the ways he impacted the community during his visit. Author Jonathan Eig wrote in his biography of Gehrig, called Luckiest Man, that Gehrig “wrapped himself in the blanket of Rochester’s innocent charm.” “As he grew accustomed to the fact that he would never play again for the Yankees, Gehrig began to treat the Mayo Clinic as if it were his new team. He wrote letters to his doctors in Rochester, thanking them for their time and attention and vowing to follow their advice throughout his treatment. Over and over, he expressed his gratitude.”

A New Hope in the Fight Against ALS With the support of the Center for Regenerative Medicine, Mayo Clinic is conducting two stem cell trials to treat ALS. The first uses cells isolated from a patient’s own fat. The second uses stem cells harvested from bone marrow and treated to produce protective factors for the nervous system. This first step in human trials is establishing that the treatments are safe. The next step is to measure how effective they are. “Some of the patients report that they feel better after treatment, but we are very cautious in how we interpret this because of the very strong potential placebo effect,” says Anthony J. Windebank, M.D., who is conducting the trials with Nathan P. Staff, M.D., Ph.D. “The patients have been wonderful in terms of participation in the study and adherence to the rigorous follow-up requirements. We are very thankful for their contributions.”

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A Condition Forces Laurel Mohan Out of the Water. A Cure Puts Her Back In.

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XX When she found out she couldn’t paddleboard and swim anymore, XX

Laurel Mohan truly understood the force of her condition.

XX “That’s when it hit me,” she says. “It was horrible. I realized it would impact things I never thought about, like getting in water.” Laurel was dealing with a fistula along her digestive tract. A fistula is any abnormal connection between different parts of the body and can happen virtually anyplace — the eye, ear, circulatory system, lungs, muscle, etc. Some are more serious than others. Laurel’s fistula connected her digestive tract to her skin. Even with the best clinical care, these kinds of fistulas can result in a dreadful quality of life, causing pain, constant drainage and interference with normal bodily functions. People with these fistulas undergo multiple surgical procedures. Laurel herself had recently had surgery to place a seton, a string that allows the fistula to drain to prevent abscesses. In essence, Laurel had a constant open wound, which made her very anxious about getting into the water for fear of infection from bacteria in Minnesota lakes. This fear led Laurel to give up one of her favorite pastimes, paddleboarding. Doctors feared the seton could be with Laurel the rest of her life, which is common for her type of fistula. “That was humiliating and devastating,” Laurel says. “A seton is not a pretty or subtle thing. It’s there and you know it’s there. It’s horrible. I wanted to date again. How do I explain this random hole in my body?”

“XX”

Bad News, Great News Laurel’s fistula was caused by an aggressive form of Crohn’s disease, which she didn’t

know she had until relatively recently. As an adult, Laurel had fought a couple of episodes of dysentery-like symptoms, endured surgeries and even ended up in the hospital a couple of times. Two years ago, she was hospitalized for three weeks. Her condition became so perplexing to her local care team that the team transferred her to Mayo Clinic in Rochester, Minnesota, at the insistence of Laurel’s friends and family. Mayo Clinic’s Robert R. Cima, M.D., was the first to suggest Crohn’s disease, though Laurel wasn’t displaying classic symptoms. “I trusted him,” Laurel says. “He always sits down and gets eye level with you. I can’t say enough about Dr. Cima. He is so good at his job and so passionate about this work. He always believes me. He’s fun. Mayo is so lucky to have him. I am lucky to have him. He said, ‘This is Crohn’s. There’s nothing but Crohn’s that can cause something this severe.’” Once diagnosed and treated, Laurel started getting better right away. But then over time she started getting abscesses. One pain she thought was a particularly bad abscess turned out to be the fistula. — XX Over the next several months, Laurel settled into the new reality of her life. Then one night the fistula started bleeding — a cyst had formed along it. Laurel was back in surgery. In recovery, she got a call to see Dr. Cima. “He was standing at his desk looking like a kid at Christmas,” Laurel says. “He told me I was a perfect candidate for a new experimental therapy.” Six months later her fistula was gone.

“He told me I was a perfect candidate for a new experimental therapy.” — Laurel Mohan

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XX XX Helping Laurel’s Body Heal Itself

“We are very excited about our results to date. We have seven patients on this study and no The XXlocation of Laurel’s fistula was particularly difficult. If untreated, the unwanted pathway adverse events have been observed,” says William A. could spread and become more complex. It could Faubion, M.D., one of the lead investigators. even result in life-threatening conditions such as “Patients have not experienced a fistula recurrence inflammation of the lining of the abdomen. with follow-up out to one year. Our data strongly However, Laurel’s fistula was in the right location suggest that we may be able to permanently heal and of the right shape for her to qualify for an early previously resistant fistulas.” phase clinical trial conducted by a collaborative To develop the treatment, Dr. Faubion, a team of gastroenterologists, surgeons and stem gastroenterologist, teamed up with surgeon Eric J. cell experts. The new treatment, funded through Dozois, M.D., who had the technical expertise to philanthropy (see sidebar), combined patientplace the stem cell-coated plug, and Allan B. Dietz, derived stem cells and a fabric plug placed surgically. Ph.D., an expert in stem cell manufacturing. “We have really excellent, dedicated physicians To help Laurel, scientists extracted her stem cells, who are not satisfied with what they can offer expanded and studied them to assure they met treattheir patients,” Dr. Dietz says. “These are the men ment criteria, then adhered them to material similar and women who are driven to provide something to that of dissolvable stitches. Scientists had used this different for their patients. It makes us very material alone to treat fistulas, but they found that efficient because we combine our expertise and after six months, only about 5 to 20 percent of patients develop the kind of teamwork that’s needed to with Laurel’s condition were cured. In the initial trial move these cell therapies into the clinic as that included the stem cells, six others besides Laurel fast as possible.” participated — almost all of them were cured.

XX

Though Laurel’s fistula was a struggle, in the end, she feels blessed — “I feel so lucky to have not just Mayo, Dr. Cima, Dr. Faubion and Dr. Dozois,” she says, “but my friend and guardian angel, Jennifer, and incredible friends and family who came halfway across the country to see me through and never left my side.”

Based on the trial’s early success, the team is planning a larger clinical trial to help deliver this cure to everyone who needs it. But they think it has much wider application. “This approach demonstrates the transformative potential for other types of chronic wounds, changing the ‘treatment’ of patients to ‘healing’ patients,” Dr. Dozois says. “This could permanently transform medical and surgical practice.”

Fistula-Free Since being diagnosed with the fistula, Laurel has moved to Minneapolis. She started a new job at the Battered Women’s Legal Advocacy Project, an agency that works to achieve justice for victims of domestic and sexual violence. She also teaches Family Violence at Minneapolis Community and Technical College. She’s started dating again, though life isn’t quite back to normal. Of course, now that she knows she has Crohn’s, it probably never will be. She’s changed her diet and misses lentils and legumes

[Boards courtesy of The Black Oar.]

Laurel Mohan and her dog, Abby, hit the waves of Lake Minnetonka.

and random foods such as coconut and avocado that her body no longer tolerates. She also needs a lot more rest and has to be careful to manage stress, which is a lot easier now that she can get back in the water. Recently, she took a trip to Voyageurs National Park on the Minnesota-Canada border. One day she waded out into the water and got on her paddleboard. She cruised around the lake for a while, enjoying the warm sun, the breeze and the quiet. Then she slid off her board, into the cool water. “I just swam and swam,” she says. “I made my co-worker take a picture because I was like, ‘Look at me! I’m swimming in a lake again!’ It felt amazing.” n

A Bet Pays Off Jerry and Connie Ehrlich know how devastating Crohn’s disease can be. They saw Connie’s father and close friends fight it and how it limited life for those they loved.

Jerry and Connie Ehrlich

For people with Crohn’s who develop fistulas, Connie and Jerry funded the clinical trial treating the condition with surgically implanted stem cells, even though they knew their gift carried a certain amount of risk.

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“Of course we realized going in that we had maybe a 50-50 chance, maybe less, of finding success,” Jerry says. “But we have an affinity for the Mayo. We’ve been coming for 35 years and have complete trust in Mayo research. It seemed like an opportunity to help.” Recently, Connie and Jerry learned that the trial was exceeding expectations. “We’re totally elated

with what’s happened so far,” Connie says. “It’s better than we could have dreamed.” One of the trial’s principal investigators, Allan B. Dietz, Ph.D., told them there would be reason to celebrate once the trial concluded. “I’m looking forward to joining you for a glass of champagne,” Connie responded. “I’ll bring it.” n

XX From the Patient, for the Patient XX

Mayo Clinic’s Human Cellular Therapy XX Laboratory (HCTL) is the heart of its stem cell treatments. Currently, the lab is helping conduct 11 early human trials, which are demonstrating promising results in chronic wounds, renal stenosis and fatal neurological diseases such as amyotrophic lateral sclerosis (ALS) and multiple system atrophy. But lab director Allan B. Dietz, Ph.D., offers a word of caution. “Our data so far look really good, and our physicians are really excited with what they’re seeing,” Dr. Dietz says. “But we don’t want to give

false hope to people or talk outside the clinic until we’re finished with phase I of these trials. It’s kind of a Midwestern superstition for me. If you brag, something bad is bound to happen.” All of these trials are using autologous cell therapies — derived from the patient, for the patient. The stem cells originate from fat (adipose), bone marrow or umbilical cord blood, and it’s the HCTL’s job to grow those cells into essentially a drug for treatment. “Cell-based therapies are already in the clinic now, with bone marrow

The previous treatment for fistula using a plug without stem cells (left) cured only about 20 percent of people. The plug seeded with stem cells (right), cured more than 85 percent in an early phase clinical trial.

Allan B. Dietz, Ph.D.

XX

transplant, for example. That’s still the foundation of our work,” says Dr. Dietz. “But I think we’re going to see these therapies creep into different parts of medicine at different rates, depending on how quickly we can demonstrate their usefulness. There will be places where it will be implemented relatively quickly, as with wound healing, because the cells seem to have a very unique and powerful capacity to heal wounds. I think in the next 10 years, you’re going to be really stunned at some of the applications as cells find their place in therapy. I think it’s the next big phase of medicine.” n

“I think in the next 10 years, you’re going to be really stunned at some of the applications as [stem] cells find their place in therapy. I think it’s the next big phase of medicine.” — Allan B. Dietz, Ph.D.

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INVESTMENT in HUMANITY As business leaders, Russ and Kathy Van Cleve understand the importance of timing. As patients, they appreciate the Mayo Clinic Model of Care. As philanthropists, they want to do the greatest good for the most people. While meeting with Mayo’s leaders, they learned about an emerging priority area with the potential to move heart disease — the leading killer of men and women throughout the world — from “treatment” to “cure.” In 2014, they established the Van Cleve Cardiac Regenerative Medicine Program with the bold vision, as Russ describes, of Mayo Clinic becoming “the regenerative medicine center of the world.”

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Seeking ‘the Greatest Impact for the Most Number of People’ An Investment in Cardiac Regenerative Medicine For Russ and Kathy Van Cleve, the decision to support cardiac regenerative medicine involved a balanced approach, which Russ describes as an evaluation of: SIGNIFICANCE — the likelihood of having a major impact for many generations to come

ANALYSIS —

INVOLVEMENT —

a well-thought-out business plan and budget

the willingness of the organization to partner and work with the benefactor

These factors — along with their personal experience of Mayo Clinic’s innovative treatments — inspired the couple to make a transformative gift. In 2014, their philanthropy established the Van Cleve Cardiac Regenerative Medicine Program in the Mayo Clinic Center for Regenerative Medicine. Russ reflects: “As we reviewed the many charitable organizations we’ve supported over the years, we knew we were helping individuals and families. And then we began to ask, ‘How do we have the greatest impact for the most number of people?’” Exploring that question helped them focus on Mayo Clinic. “We heard Dr. Andre Terzic describe his vision for cardiac regeneration at several Mayo events,” says Kathy, “and the more we learned, the more excited we became.”

Harnessing the Body’s Ability to Heal Itself

Russ and Kathy Van Cleve’s vision is accelerating how quickly science can deliver regenerative treatments to people with heart conditions.

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Cardiac regenerative medicine is an initiative whose premise is elegant in its simplicity and profound in its impact. “Our team is harnessing the body’s ability to heal itself,” says Andre Terzic, M.D., Ph.D., the Michael S. and Mary Sue Shannon Family Director of Mayo Clinic’s Center for Regenerative Medicine. “If you’ve had a paper cut on your finger or skinned your knee falling off a bicycle, you’ve experienced this self-

healing phenomenon, initiated by the body’s own ability to renew and keep our tissues and organs healthy. We’re applying the same principle to cardiovascular diseases, the leading cause of death among men and women throughout the world.” Natural as well as engineered tools help restore damaged heart muscle. “Mayo Clinic developed a state-of-the-art method to strengthen the ability of a person’s own stem cells to repair heart muscle,” explains Atta Behfar, M.D., Ph.D., who directs the Van Cleve Cardiac Regenerative Medicine Program. “As technology evolves, we see the potential to use noncardiac sources in regenerating cardiac tissue. These sources may include growth factors and other products produced by the body. Ultimately, we envision characterizing and manufacturing these products and services to individualize treatment for cardiac patients.”

Andre Terzic, M.D., Ph.D.

“We heard Dr. Andre Terzic describe his vision for cardiac regeneration, and the more we learned, the more excited we became.” — Kathy Van Cleve

Support from the Van Cleves comes at “a critical time,” says Dr. Terzic, who is also the Marriott Family Director of Comprehensive Cardiac Regenerative Medicine and the Marriott Family Professor of Cardiovascular Research. “We are building upon a momentum of success as we work toward changing the medical horizon from ‘treatment’ to ‘cure.’” The timing was right for the Van Cleves as well. As entrepreneurs and business leaders, they understand how to grow an enterprise from concept to reality. Coming from families that valued a strong work ethic, Russ began his career in banking and Kathy started hers in investment real estate. Together, they established a successful private homebuilding and land development company in Newport Beach, California.

“Russ and Kathy Van Cleve are formidable benefactors who co-create with us,” says John H. Noseworthy, M.D., President and CEO of Mayo Clinic. “In our culture of teamwork, we often talk about collaboration among physicians, educators and researchers in different specialties. We know from data and experience that this model produces outstanding results. Equally important is the teamwork between benefactors and Mayo Clinic. With their expertise and passion, friends like the Van Cleves collaborate with us. Together, we can achieve remarkable outcomes.” As discussions moved forward with the cardiac regenerative team, Russ and Kathy reviewed the program’s business plan. Their goal was a plan whose business discipline matched its scientific vision.

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“I would also encourage anyone who has a heart for helping others to start now, whatever the amount may be. Don’t miss the excitement of joining a great cause while you can enjoy it.” ­— Russ Van Cleve

Russ and Kathy with John H. Noseworthy, M.D., President and CEO of Mayo Clinic.

“The Van Cleves asked tough questions — the right questions,” says Michael Camilleri, M.D., Executive Dean for Development and the Atherton and Winifred W. Bean Professor, describing a back-and-forth dialogue that spanned several months. “Mayo colleagues dug deep and produced the answers. Throughout the process, all parties were committed to developing the best product.” Russ notes: “We’re delighted with the outcome. Mayo has been highly communicative. It’s a pleasure to meet and know the staff, tour the labs, and learn about the milestones that have been achieved and those that are to come.”

Gratitude Inspires Generosity The Van Cleves are invested in Mayo Clinic as philanthropists, but they are equally dedicated as patients. In 2006, Russ — always healthy and vigorous — began to experience troubling symptoms that no one could diagnose. “The chief of staff at our local hospital said we should go to a teaching hospital,” he recalls. Kathy, drawing upon her Minnesota roots, knew about Mayo Clinic. Decades earlier, her 24 Mayo Clinic Magazine

father taught Dale Carnegie leadership classes at the nearby Kahler Hotel. Russ was examined by gastroenterologist Kenneth K. Wang, M.D., and colleagues. The diagnosis was cancer of the esophagus, Russ recalls, “But Mayo caught it early, so they could offer a new treatment.” Dr. Wang notes, “Russ was one of our earlier patients to undergo endoscopic resection, which preserves the esophagus and maintains the patient’s quality of life.” Since then, the procedure has become the standard of care for patients with this condition. Russ and Kathy continue to have their medical care at Mayo Clinic. “We have referred many friends to Mayo, and they come back in awe,” says Kathy. “Mayo Clinic provides top-quality care that is highly coordinated, delivered in a culture of kindness.” Their appreciation for Dr. Wang led the Van Cleves to establish a named professorship as well as the Russ and Kathy Van Cleve Endowed Fund in Gastroenterology Research Honoring Kenneth K. Wang, M.D. By expressing gratitude to Dr. Wang and supporting cardiac regenerative medicine, Russ and Kathy focus on the present and envision the future. “A lot of people think about making charitable gifts in their wills,” says Russ. “That’s good, and we’ll do it too. However, I would also encourage anyone who has a heart for helping others to start now, whatever the amount may be. Don’t miss the excitement of joining a great cause while you can enjoy it.” Russ and Kathy are not afraid to dream big. “We see Mayo Clinic becoming the regenerative medicine center of the world,” says Russ. Kathy agrees: “We get so much joy watching our giving help other people.”

Celebrating Their Philanthropy. In July 2015, Mayo Clinic was honored to induct Russ and Kathy Van Cleve as Philanthropic Partners, Mayo Clinic’s highest level of recognized giving. The Van Cleves were joined by family and some of their closest Mayo Clinic friends for the celebration in Rochester, Minnesota.

TOP IMAGE: The Van Cleve family — from left, granddaughter Sofia, Kathy, Russ, son Grant, daughter-in-law Carina, grandson Axel and granddaughter Elsa. ABOVE LEFT: The Van Cleves with Kenneth K. Wang, M.D., who is named as the Russ and Kathy Van Cleve Professor of Gastroenterology Research, and his wife, Ruth Larsen, R.N., Administrator of Nursing. ABOVE RIGHT: Michael Camilleri, M.D., Executive Dean for Development, presents Russ and Kathy with a replica of their Philanthropic Partners storyboard in Mathews Grand Lobby, Mayo Building.

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A Promise Delivered. And a New Promise Made. More than a decade ago, stem cells promised to revolutionize medicine. Within the last couple of years, these promises finally started becoming reality. For instance, Mayo Clinic’s Center for Regenerative Medicine alone is hosting nearly three dozen clinical trials applying stem cells to treat heart failure, amyotrophic lateral sclerosis (ALS), bone loss and cancer. But as Mayo Clinic scientists develop a fuller understanding of the healing process, a new promise is developing — cell-free tissue regeneration and repair. In the culmination of a nearly decade-long scientific journey, this fall, Mayo Clinic’s Center for Regenerative Medicine contributed to the launch of Congestive Heart Failure Cardiopoietic Regenerative Therapy (CHART), an advanced clinical study applying next-generation stem cells designed at Mayo Clinic to heal heart tissue damaged by a heart attack. When scientists first started applying stem cells to the heart, results were rather disappointing. These first attempts simply extracted stem cells out of tissues such as bone marrow and applied them to the heart. Only a few people responded. But by studying those rare individuals, scientists learned that in aging patients with heart failure, stem cells were themselves older and sick, losing the ability they once had to heal the body. However, further studies into what was going on in the cells of the responders revealed techniques to rescue stem cell function. One was applying specialized proteins called growth factors to the stem cells after extraction, which helps turn back the clock for the cells and gives them the guidance they need. Scientists then refined their delivery technique, developing new ways to apply the cells directly to damaged tissue in a minimally invasive manner. In the most recent mid-phase clinical trial, which tests the effectiveness of a treatment on a small scale, every patient showed improvement. The average patient’s ejection rate increased 7 percentage points, which may not sound like

26 Mayo Clinic Magazine

a lot, but normal ejection rate — how much blood the heart pumps out — is only 60 percent. And a person isn’t considered to be in heart failure until it drops below 40 percent. To be considered for the study, patients had to have severe heart failure — 35 percent ejection rate. A 7-point improvement meant new life. “We saw some people that could barely walk across the room without fatigue,” says Atta Behfar, M.D., Ph.D., who directs the Van Cleve Cardiac Regenerative Medicine Program. “After treatment they were riding bikes. They got their lives back.” Applying what they’ve learned, researchers in the Van Cleve Program plan to launch a number of clinical trials, administering stem cells to hearts earlier after heart attack, hearts that are severely dilated and hearts that have started to fail due to long-standing valve disease. But the latest success and clinical trials are just the beginning.

Wrapping the Heart If you prick your finger, you see bright red arterial blood, loaded with oxygen. The veins in your arms are blue because they’re filled with blood that the body has pulled oxygen from. But the blood that perfuses the heart is chocolate brown — every milligram of energy is depleted as it performs its job. This need for a strong, oxygen-rich blood supply has been a major stumbling block for some cell applications. Researchers in the Van Cleve Program have run into the problem as they build

sheets of stem cells, which they plan to use to augment the use of artificial pumps, called left ventricular assist devices (LVADs), for patients whose hearts are too large to repair on their own. “The pump is great for supporting the left side of the heart,” Dr. Behfar says. “But in a lot of people, both chambers are in failure. After LVAD placement, suddenly the right side has a lot of blood pumped in. Most often, over a year or so, the right side, already failing, starts to give out.” Dr. Behfar and colleagues envision wrapping the right side of the heart in this sheet to strengthen it when the pump is placed in the left. But the thickness of the sheet is a challenge. Because blood supply is so critical, the middle layers of cells die from lack of oxygen. However, colleagues in other Center for Regenerative Medicine programs are solving this problem. For instance, researchers in the Plastic and Regenerative Surgery Program are attempting to grow new skin, including all the layers and components — epidermis, hair follicles, sweat glands and, most important, blood vessels. Researchers in the Musculoskeletal Regeneration Program are similarly applying stem cells to increase the blood flow to bones. “With all of the new discoveries in tissue regeneration within the Center for Regenerative Medicine, we are able to take advantage of the significant know-how developed within Mayo Clinic to drive new technologies toward clinical practice,” Dr. Behfar says.

A Radical Question When Dr. Behfar and colleagues noticed that a third of patients enrolled in their clinical trial were superhealers, they immediately began to study why. If they could understand what was going on, they could translate the success to other patients. Along the way, a radical question arose — Are the stem cells even necessary? Was there another way to encourage the body to regenerate?

Atta Behfar, M.D., Ph.D.

“We saw some people that could barely walk across the room without fatigue. After treatment they were riding bikes. They got their lives back.” — Atta Behfar, M.D., Ph.D.

When a damaged heart is treated with stem cells, the cells aren’t solely responsible for resulting healing. Instead, they act as a guide for the body and its tissues, instructing them on the path toward health. As molecular biology gets better every day, researchers in the Van Cleve Program are more fully understanding that process — the signals the cells are sending each other; the immunological pathways used; the proteins involved. They believe this understanding could eventually make regenerative medicine as accessible as pills. “From the initial stem cell trials we are learning what is truly needed to achieve regeneration,” Dr. Behfar says. “If we can deliver these therapies in a purified form, it would have huge advantages — a singular drug that would give everyone the same benefit as the superhealers.” n

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PROTON BEAM 360º

MAGNETIC RESONANCE IMAGING (MRI) Patients have MRI scans to provide enhanced detailed views of tumors and organs. These images are fused with patients’ computerized tomography (CT) scans to fine-tune treatment.

Mayo Clinic Proton Beam Therapy Revolves Around the Patient

CT SCAN/SIMULATION SETUP ROOM Teams verify patients’ positioning to match the coordinates of the areas to receive radiation. Radiation therapists use X-rays to perfectly align patients on a table. A robotic arm picks up patients on the treatment table and places them onto a gurney.

Because proton beam therapy is very precise, the program uses patient-specific immobilization devices throughout treatment. After patients are fitted, radiation oncologists pinpoint treatment areas with CT scans. These coordinates are transmitted to a laser system, and the precise areas are marked on patients.

DAVID MINKIN FOUNDATION ANESTHESIA SUITE (below) Some pediatric patients will have anesthesia during proton beam therapy to help them remain calm and still, which is essential for accurate treatment.

JACOBSON BUILDING (above) The Mayo Clinic Proton Beam Therapy Program in Rochester, Minnesota, is housed in the Richard O. Jacobson Building. Proton beam therapy safely passes through sensitive organs and attacks cancer where it lives. This sophisticated technology is a powerful addition to our arsenal of cancer therapies.

EXAM ROOM Of the 16 exam rooms, two are dedicated to pediatric patients; three for ear, nose and throat patients; two for gynecology patients; and one for bariatric patients.

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WILLIAM F. O’CONNOR LOBBY (above) The main lobby provides space to socialize and have private conversations. An adjacent pediatric lobby, named by the Gordon and Karen Stade Family, helps children and their families relax and play while they wait for appointments.

The gantry rotates 190º around the patient to direct the beam to its precise target. TREATMENT ROOM (left) Patient positioning is verified with imaging for a final time. Radiation therapists order the prescribed dose of energy (proton radiation) from the accelerator. The radiation travels through the beam line and is delivered into the treatment room. Patients don’t feel or hear anything. Therapists are outside of the room controlling the process and can see and communicate with patients at all times.

SYNCHROTRON AND BEAM LINE A synchrotron accelerates protons up to twothirds the speed of light. Within two seconds, the protons travel a distance equal to about 10 times around the earth. Once the protons reach the desired energy — customized for each patient — they are sent down the beam transport line into the treatment rooms.

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A Beautiful Friendship

‘Proton Beam Triplets’ Forge Bonds During Cancer Treatment Two months ago, they were strangers. Today, Ashley Sullivan, Jessie Brenholt and Kylie Harer call themselves the “proton beam triplets,” sharing a bond not of birth, but of circumstance. The three young women — all in their 20s — have been diagnosed with brain tumors and are among the first patients to undergo proton beam therapy at Mayo Clinic’s Rochester, Minnesota, campus. And that was, as Humphrey Bogart would say, “the beginning of a beautiful friendship.” Jessie explains that she felt an “instant bond” when she met Ashley and Kylie. “Most people our age can’t relate to what we’re going through,” she says. With Ashley and Kylie, she didn’t have to explain side effects or worries about the future. They already understood. But it wasn’t all cancer talk. “We had a hoot together,” Jessie says.

“We cracked jokes all the time, which made things a lot easier.” The “PB triplets” also explored Rochester together, touring the Plummer Building and Assisi Heights. They fed geese at Silver Lake Park, visited animals at the humane society and started a prayer group at Hope Lodge, where all three stayed during treatment. As much as the women have come to treasure their friendships, returning to everyday life is the end goal for each of them. Ashley is returning to her job as a dog walker. Kylie is looking forward to using her mechanical engineering degree (she’d had her first job offer just six days before her diagnosis). And Jessie plans to build a business as a custom baker. “I wouldn’t wish this on anyone, but I’m glad to have them to go through it with,” Jessie says. “Before I met them, I felt alone.” n

Ashley Sullivan, Jessie Brenholt and Kylie Harer

“I wouldn’t wish this on anyone, but I’m glad to have them to go through it with. Before I met them, I felt alone.” — Jessie Brenholt

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CENTER FOR BIOMEDICAL DISCOVERY U P DATE

Unraveling the Mysteries

New Center for Biomedical Discovery Gleans Basic Understanding of Disease How do you starve cancer? How does the body recognize “self”? What makes cells stop producing insulin? These are some of the unanswered but fundamental questions Mayo Clinic’s new Center for Biomedical Discovery will be targeting. The center brings to the forefront the cellular and molecular expertise in Mayo’s laboratories, along with the latest technologies, to gain a better understanding of what actually causes disease. Discoveries in the laboratory form the basis for tomorrow’s clinical care. Mark A. McNiven, Ph.D., George M. Eisenberg Professor, is director of the new center. He says finding the mechanism of disease is essential to curing it, rather than simply limiting damage or treating symptoms. “Our approach has been to assemble teams of talented

Mayo scientists with diverse skill sets toward understanding the fundamental molecular and cellular basis of diseases that afflict our patients,” Dr. McNiven says. “Discovery science is a significant part of our research effort at Mayo Clinic, as it is the starting point in seeking help for our patients when current knowledge isn’t enough,” adds Gregory J. Gores, M.D., Ruben R. Eisenberg Professor and executive dean for research at Mayo Clinic. Under Dr. McNiven’s leadership, cross-disciplinary groups of researchers will be road mapping diseases to improve health in diverse fields.

To maximize discovery knowledge, the platforms in the center bring together teams of investigators from across Mayo Clinic. While the team science is initially focused on investigators within Mayo Clinic, there are plans to create alignment strategies with external partners in industry, academia and foundations as the center evolves. Dr. McNiven will also prioritize innovation and commercialization to help make new discoveries available to patients. Dr. McNiven hopes to accelerate biomedical discovery at all three Mayo sites to provide true mechanistic understanding of the disease processes that afflict most of our patients. n

“Discovery science is ... the starting point in seeking help for our patients when current knowledge isn’t enough.” — Gregory Gores, M.D.

Teams are organized around three platforms of excellence, which guide the center’s research on disease processes spanning most organ systems. ■■

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The Metabolism and Diabetes platform, led by Lawrence J. Mandarino, Ph.D., studies diseases related to defects in metabolism, such as obesity, type 2 diabetes and cardiovascular disease. The Immunity and Fibrosis platform, co-led by Virginia M. Shapiro, Ph.D., and Edward B.

■■

Leof, Ph.D., Erivan K. Haub Family Professor of Cancer Research Honoring Richard F. Emslander, M.D., investigates the role of the immune system in disease, including the causes of organ fibrosis and cirrhosis. The Cancer and Cell Aging platform, under the co-leadership of Daniel D.

Billadeau, Ph.D., Edmond A. and Marion F. Guggenheim Professor, and Jan van Deursen, Ph.D., Vita Valley Professor of Cellular Senescence, explores the mechanisms that contribute to unchecked cell growth, as well as the impact of cell aging on diseases like arthritis and muscle wasting.

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BETTER THAN A NEW BIKE Millions of Samples From People Like You, Help People Like You When Alexander S. Parker, Ph.D., signed for the box containing over 1,000 DNA samples from individuals with no history of kidney cancer, he could barely contain his excitement. “It may sound funny to some people, but for a cancer epidemiologist like me who has been exploring the causes of kidney cancer for over a decade, this was more exciting than when I got a new Schwinn 10-speed bicycle for my 10th birthday,” Dr. Parker says. Dr. Parker, who is the Cecilia and Dan Carmichael Family Associate Director for the Center for Individualized Medicine at Mayo Clinic’s campus in Florida, has invested considerable time and money to collect data and biological samples from over a thousand individuals who were diagnosed with kidney cancer at Mayo Clinic. He knew all too well the painstaking process it took to amass this precious resource that would help his team tackle the key issues that face the over 60,000 people diagnosed with kidney cancer each year in the United States. That’s why the prospect of having to spend even more time and money to collect samples and data from a comparison group of people without kidney cancer to serve as the “controls” in his studies made him very nervous.

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Luckily for Dr. Parker and researchers like him, Mayo Clinic invested in creating the Mayo Clinic Biobank to help speed up the pace of research and lower costs for investigators. The Biobank is a collection of millions of biologic specimens that create a “library” researchers can use to rapidly find the exact data and samples they need for their investigations. Dr. Parker simply made a request for access to information and DNA samples on a specific subset of participants in the Biobank who reported no history of kidney cancer anywhere in their family. Only a few months after the request, the samples and data arrived, and Dr. Parker was moving forward with a study to determine whether specific genetic

“This facility is here to help them achieve their research goals as quickly as possible.” — Stephen N. Thibodeau, Ph.D.

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mutations in the enzymes that metabolize alcohol interact with a person’s actual alcohol intake to increase or decrease the risk of developing kidney cancer. Moreover, when colleagues from the National Cancer Institute called asking if he could participate in a large, multicenter study to dive deeper into new genetic causes of kidney cancer, Dr. Parker was ready. “Without the Biobank as a resource, it would have taken me several years and tens of thousands of dollars to get access to the data and samples from the right control group to match with my cases,” Dr. Parker says. It is this acceleration of research and cost savings for investigators that underscores the major advantage of the Mayo Clinic Biobank, a treasure trove of biological specimens including DNA, serum, plasma and data from thousands of patients.

Stronger Research Biobank samples can be shipped safely and timely to Mayo Clinic investigators wherever they might work. What’s more, in the highly competitive world of federal grants, the Biobank gives Mayo Clinic researchers an edge. “The Biobank helps us be more competitive for grants because we can indicate that we already have access to the samples we need and are, therefore, ready to go,” Dr. Parker says. Every week, investigators request samples or clinical data, including control samples, disease samples and genetic data that have been collected from preconsented patients. “Researchers can get the specific controls they need, rather than hunt for subjects,” says Janet E. Olson, Ph.D., project director of the Mayo Clinic Biobank. “This makes possible research that otherwise might not be possible. We already have the samples and data collected. This access has helped our researchers secure grant funding and be more nationally competitive.”

50,000 Participants, Millions of Samples Stephen N. Thibodeau, Ph.D., and James R. Cerhan, M.D., Ph.D., are the leaders behind the Biobank. As the David F. and Margaret T. Grohne Director of the Biorepositories Program within the Center for Individualized Medicine, Dr. Thibodeau is a passionate advocate for the Mayo Clinic Biobank, which moved to one of the most technologically advanced facilities in medicine in 2014. Mayo Clinic now has samples from more than 50,000 participants enrolled in the Biobank in addition to millions of investigator samples stored in northwest Rochester, Minnesota, a few miles away from its downtown campus. The facility is protected multiple times over to ensure that freezers can withstand everything from a quick power outage to widespread natural disasters. “We work with hundreds of investigators here at Mayo,” says Dr. Thibodeau, who is also the William H. Donner Professor. “This facility is here to help them achieve their research goals as quickly as possible. Access to quality samples is a critical piece in Mayo investigators’ quest to understand disease. “The reason for building this facility was to work with every investigator at Mayo so that they can spend their time and effort focusing on their patient population — that’s what they do best. We can then process, store and manage samples collected from their patient on their behalf — that’s what we do best.” For investigators like Dr. Parker, the best part is the ease of accessing and using the samples. “I can go to the Biobank and get high-quality data and samples on a comparison group of individuals that are matched to my kidney cancer cases on important features like sex, age and state of residence,” Dr. Parker said. “While I’ll always be grateful to my parents for the new 10-speed, the package from the Biobank is a real game changer.” n

Blood for Health for All Researchers understand that better health literacy — the ability to obtain and process health information and services to make good health choices — means better health. Unfortunately, many U.S. populations have traditionally had low health literacy for various reasons. The Mayo Clinic Biobank in Arizona, Sangre por Salud (Spanish for “Blood for Health”), hopes to raise health literacy for one underserved population while broadening the base of genomic research efforts. “It’s important to have representation from a diverse array of genetic information and cultural behaviors if we want to improve practice with tools that have wide applicability and serve all parts of the American population,” says Lawrence J. Mandarino, Ph.D., Division of Endocrinology and Mayo Clinic Biobank director in Arizona. All participants in the Sangre por Salud biobanking effort come from Phoenix-area clinics operated by Mountain Park Health Center, which is a key collaborator along with Arizona State University. “This collaboration provides testing and early detection for patients who otherwise couldn’t afford this care, and much-needed diversity for the biobank,” says Dr. Mandarino. “Traditionally, access to biomedical research has been restricted in ethnic groups with low socioeconomic status. It’s not because they haven’t wanted to participate. Rather, it hasn’t been available to them. We’re making it available.”

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WH Y WE GIV E

The Best Gift

“

Life goes along until, one second to the next, everything totally changes. You or a loved one experiences a health crisis, and life suddenly comes to a halt. All of a sudden, things that consumed your time thinking about become meaningless. Because when it all comes down to it, nothing is more important than your health. And no institution takes care of health like Mayo Clinic. The doctors,

physician assistants, nurses, schedulers, designers, housekeepers — everyone on the Mayo staff is there for one reason: you and making sure your health is in check. And there is not a person who isn’t the best at what they do. We are proud to be in the position of being able to support Mayo with this gift. Being able to be a part of true excellence is the best gift we can think of.

— Craig and Randy Rubin, Michigan Major Benefactors

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”

Thank You Gifts of all sizes strengthen health care for people everywhere. Mayo Clinic is deeply grateful for each gift and finds inspiration in your support.

MAKI NG AN I MPACT

Cumulative Philanthropy Mayo Clinic recognizes each benefactor for philanthropic giving of $100,000 to $10 million or more in the Hall of Benefactors at Mayo Clinic in Rochester, Minnesota. We also recognize those who support our work in Florida and Arizona in the Hall of Benefactors on the respective campuses.

RECOGNITION LEVELS ■■ ■■ ■■

Philanthropic Partners $10 million or more Principal Benefactors $1 million to $9,999,999 Major Benefactors $100,000 to $999,999

L E AVI NG THE WORLD A BETTER PLA CE

Planned Giving

Alumni Philanthropy

Committed benefactors who want to make a difference and provide a legacy of philanthropy can do so through planned gifts. Benefactors who support Mayo Clinic through a bequest in their will or another type of planned gift become members of The Mayo Legacy. Mayo Clinic recognizes these members in electronic recognition kiosks in the Halls of Benefactors at all Mayo Clinic campuses.

Having seen and felt the direct impact of philanthropy, Mayo Clinic alumni know the difference it makes better than anyone. Many become benefactors of Mayo to help maintain the highest quality of patient care, research and education. Mayo Clinic recognizes their generosity in electronic recognition kiosks in the Halls of Benefactors at all Mayo Clinic campuses. RECOGNITION LEVELS ■■ ■■

■■

Mayo Alumni Laureates $100,000 or more Doctors Mayo Society $10,000 or more; bequest of $25,000 or more Edith Graham Mayo Society $1,000 (Mayo School of Health Sciences)

For more information about philanthropy at Mayo Clinic, please call 1-800-297-1185 (toll-free) or visit www.mayoclinic. org/development.

GIV ING BACK

Annual Giving Some benefactors choose to support Mayo Clinic’s work with yearly gifts, and Mayo Clinic recognizes them in electronic displays at Mayo Clinic’s campuses in Minnesota, Florida and Arizona. Six levels honor benefactors for annual philanthropy of $1,000 to $99,999.

RECOGNITION LEVELS ■■ ■■ ■■ ■■ ■■ ■■

Mayo Leadership Circle $50,000 to $99,999 Mayo Ambassadors $25,000 to $49,999 Mayo Sponsors $10,000 to $24,999 Mayo Stewards $5,000 to $9,999 Mayo Patrons $2,500 to $4,999 Mayo Friends $1,000 to $2,499

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Vincent Naimoli, Who Fought to Bring Baseball to Tampa, Faces Down a New Challenge

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When Vince was majority owner of the Rays, no one dared draw his focus from a game. But tonight he’s reading sports stories on his phone, talking with his wife, Lenda, and her twin sister, Glenda, and greeting some original investors in the team who are joining him in his former box. Several aisles down are four seats with Vince’s name on them. But the Naimolis always give their season tickets away. They have a new focus these days — a neurological disorder called progressive supranuclear palsy (PSP).

V

incent Naimoli stands in Tropicana Field’s Jackie Robinson Suite, which he named for his favorite childhood player. He grips his walker for support as he watches the Tampa Bay Rays warm up. The franchise he is credited with bringing to Florida is playing the New York Yankees. Vince launches into a story about the first time the Rays ever beat the Yankees, and how the Yankees’ manager reacted. “Joe Torre walks up and says, ‘I’ll never shake your hand again,’ because we beat them that night,” Vince says, shedding some light on the intense, sometimes superstitious world of professional sports. “He wouldn’t shake hands with me because he said it was a jinx.”

‘I Felt Terrible, But I Was Glad’ Glenda says her brother-in-law’s symptoms probably started in 2011. She remembers Vince driving them somewhere, and for the first time feeling unsafe with him behind the wheel. PSP is in the family of parkinsonian diseases. It is more common in men than in women and usually develops between ages 55 and 70. Its most prominent feature is the rapid loss of control

over movement. Vince, for instance, suddenly becomes unstable on his feet and can fall backward. He falls a couple of times a week and relies on the use of a walker and handrails. Vince and his family also are adjusting to his progressing difficulties in speaking. He talks much less, and his speech is difficult to understand at times. This can be frustrating for a man who was CEO of companies, including Anchor Glass. Vince works hard four days a week on speech, physical and occupational therapy, suggested by the husband of a former Mayo Clinic patient with PSP. It’s helping him to stay articulate, physically strong and able to do daily activities like dress himself. PSP was first reported in the medical literature in the 1960s and wasn’t recognized as a disorder until the 1980s. Vince saw a couple of doctors in Tampa who couldn’t pinpoint the problem; one thought he might have dementia. Last year a friend told him, “You don’t look well. You need to go to Mayo Clinic.” Vince consulted Ryan J. Uitti, M.D., a neurologist at Mayo’s Florida campus.

Vince and Lenda Naimoli at Tropicana Field in Tampa Bay.

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“In less than 10 minutes, Dr. Uitti told him he had PSP,” Lenda said. “I Googled it, and he had all the symptoms.” Vince says of his diagnosis, “I felt terrible, but I was glad to learn what it was about, the falling backward. If anyone has anything seriously wrong with you, go to Mayo.”

World’s Largest Collection Today, there is no treatment for PSP, which progresses rapidly. And because it is one-tenth as common as Parkinson’s disease, few research dollars are available. However, Mayo researchers are identifying the underlying mechanisms of PSP to develop therapies. A major research resource is Mayo Clinic’s brain bank on the Florida campus, which has the world’s largest collection of brains — more than

1,000 — and biological samples donated for study of PSP and a closely related disorder, corticobasal degeneration (CBD). “Patients with PSP develop a parkinsonian syndrome, but none of the treatments for Parkinson’s works for PSP,” says Dennis W. Dickson, M.D., director of the brain bank who helped develop the diagnostic criteria for CBD. “We need to understand the disease better.” The brain bank helps researchers do this by providing material needed to study how PSP develops and how to treat or even prevent it. Having a large collection of samples allows for more accurate study. Dr. Dickson is also the Robert E. Jacoby Professor of Alzheimer’s Research and the director of the National Institute of Neurological Disorders and Stroke’s Morris K. Udall Center of Excellence

“Things happen to people, to everybody. This has made me stronger, and we’ve gotten closer.”

— Lenda Naimoli

for Parkinson’s Disease Research on Mayo Clinic’s Florida campus. It’s the only Udall Center in the nation focused on PSP and CBD research. Through a 2011 genomewide association study, Mayo Clinic researchers helped identify several genetic variants that influence gene expression in the brains of PSP patients and are therefore potential genetic targets for therapy. Nilufer Taner, M.D., Ph.D., another researcher on Mayo Clinic’s Florida campus, holds one of a handful of PSP research grants awarded by the National Institutes of Health.

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Keep Swinging Hearing the diagnosis was a profound moment for Vince’s wife, who had struggled to understand what was happening to her husband. “I was like, ‘Oh, my gosh!’ because my life was upside down.” But Lenda remembers an earlier challenge. Once, a newscaster called to interview Vince about getting approval for the MLB franchise; the man said Vince’s life would never be the same. The Naimolis found those words to be very true, as baseball consumed a huge part of their lives. “When he owned the team, we went to 162 games a year,” Lenda says. “The last 20 years, Vince was constantly working, and when he was working, I didn’t see him.” Vince applied his CEO financial acumen of savings and efficiency to building the Rays and constructing Tropicana Field — and took some harsh criticism for it with fans decrying the team often having the lowest payroll in the majors. “At the grocery store, a man approached him and said, ‘Why don’t you open your pocketbook?’” Lenda recalls.

Vince and Lenda toughed it out. In 2008 the team finished first in the American League East, beating out the powerhouses New York Yankees and Boston Red Sox, and wound up in the franchise’s first World Series. Vince and Lenda are toughing it out again as they work through Vince’s “bucket list” — all the things he wants to do in the time he has remaining. They took a voyage from New York to London on the Queen Mary 2 in June 2015. A family cruise with all of Vince’s children and grandchildren from his first marriage is in the works for the end of the year. “Things happen to people, to everybody,” Lenda says. “This has made me stronger, and we’ve gotten closer. We’ve got to be strong and get up and do what we do every day. Right, Vince?” Through the PSP, Vince immediately, but only, answers, “Yes.” He and Lenda know the score, but they are staying at the plate and will keep swinging. n

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Mayo Clinic and United Therapeutics Are Teaming Up to Help More People Find Their New Freedom

Logan McCaskill remembers the pain after her double-lung transplant

this year, and the struggle to get back on her feet again. But mostly, the 18-year-old Florida girl remembers something else — something simple for most of us but strange and profound for her. Logan quietly begins to cry as she talks about it. “It was weird, how deep breaths I could take.”

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ogan was born with cystic fibrosis (CF), a genetic disease that produces thick mucus in the lungs, making it a battle to breathe and providing the perfect environment for infections that cause scarring. When she was 7 years old, doctors placed a feeding tube so that her body could get enough nutrition, as it exerted so much energy just to breathe. The tube stayed 10 years. By middle school, Logan’s lung function was so poor that she missed weeks of school at a time. Throughout her struggle, Logan knew what was yet in store for her. Her sister Jordan, just two years older, also has CF. Logan watched how Jordan’s health declined, how she dealt with one of her diseased lungs collapsing, how dire her condition was when she landed on the transplant waiting list. And Logan saw how a double-lung transplant in 2013 saved her sister’s life. The next year, Logan’s own condition worsened. She went on oxygen and was in and out of the hospital. She became weaker. Soon she, too, was on the waiting list for a double-lung transplant.

The two sisters at times were in the hospital together, and at other times had to live separately.

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The Call Comes Through it all, she continued to volunteer at an animal shelter and at a program that boxes and ships food to hungry children. “She does a lot of volunteering,” says her father, Darrell McCaskill. “She has never looked at having CF as being a victim.” It’s an attitude the family has shared as two of the three sisters in the family live with CF. “We put things into perspective,” Darrell says. “You look around the world and at different countries, and we could be worse off. I am grateful that they both are able to communicate, and talk, and their brains are active, and they are smart. I’m fortunate that they are who they are.” Logan and Jordan have spent hospital stays together, and at other times had to live separately, one with each of their divorced parents, to prevent them from passing lung infections to each other. Though fighting a battle of her own, Jordan wrote in a blog that the hardest part was waiting for Logan to get “the call that holds her entire future.”

Mayo Clinic has one of the nation’s largest and most experienced transplant practices, with campuses in Minnesota, Arizona and Florida. More than 200 physicians in transplant medicine and surgery at the three campuses perform about 1,800 transplants a year and have a long track record of excellent outcomes. Mayo Clinic established its lung transplant program on the Florida campus in 2001. Since then, Mayo has performed 469 lung transplants and eight heart-lung transplants. The survival rate at Mayo Clinic’s campus in Florida exceeds the national average by 5 percent.

At 11 p.m. one night in February 2015, it came. Mayo Clinic’s Florida campus said two donor lungs were being flown in from Miami. Logan needed to get to the emergency room within hours. “I couldn’t believe it when I actually got the call,” Logan says quietly. “I didn’t think it would ever come.”

A Call for All Who Need It For many, the call never comes because there aren’t enough donor lungs available for everyone who needs a transplant. Fewer than 1 in 4 organ donors currently have lungs considered suitable for transplant. Lungs can be rejected for various reasons — the donor was too old, had a history of smoking or maybe was on a ventilator too many days before dying. Or maybe an unexplained spot appeared on a chest X-ray. Mayo Clinic and United Therapeutics Corp. believe many lungs could be reclaimed to save more lives. The two are collaborating to build and operate a lung restoration center in Jacksonville on Mayo’s Florida campus. In 2014, there were 1,925 lung transplants in the nation. Currently, there are 1,550 people on the waiting list for a lung. Restoration has the potential to significantly reduce the number

of people on the waiting list, and reduce an individual’s time on the waiting list. The lung restoration center will use processes that prevent deterioration of lung function, maintain normal functioning, and also clear the lungs of clots and bronchial secretions that might affect the organs’ suitability for transplant. The restored lungs will be made available to patients at Mayo Clinic and other transplant centers throughout the United States. “This collaboration is exciting because it allows Mayo Clinic to bring the latest advances in lifesaving technology to transplant patients,” says Gianrico Farrugia, M.D., vice president of Mayo Clinic and CEO of Mayo’s campus in Florida. “Increasing the number of lungs available for transplantation provides more options for patients suffering from pulmonary disease.” United Therapeutics will construct, equip and operate the center on land leased from Mayo Clinic. Mayo will provide physician oversight and work with organ procurement organizations to procure and deliver lungs to the center. They expect to open the center in late 2017 and may, in the future, develop similar lung restoration centers at Mayo Clinic’s campuses in Arizona and Minnesota.

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The organizations also plan to work together on regenerative medicine research to heal damaged tissues and organs. One goal is to build organs for patients from their own tissue so they won’t face a lifetime of medication regimens designed to fight organ rejection, which is too typical with donated organs. Other regenerative medicine researchers are studying how to replace damaged cells with healthy ones derived from the patient, avoiding immune system rejection. For example, Mayo Clinic is injecting patients with large volumes of their own stem cells to counteract bronchiolitis obliterans, an immune system reaction in patients who have received transplanted organs.

‘I Can Go Anywhere’ Darrell McCaskill notes some people decide not to get a transplant because they see it as trading one illness for another. But it was a trade-off the McCaskills chose to make. Like all transplant recipients, Logan will spend the rest of her life trying to stave off an attack response by immune antibodies produced by either her donor organ or her own body. Logan takes a lot of medicine — three medications to prevent rejection plus antibiotics to prevent infection. Her sister Jordan, who received her transplant at a different facility, is fighting rejection now and once again uses oxygen. Logan knows she might face a similar battle, but at least for now, the oxygen tank is gone. No more coughing or mucus. Logan can sleep through the night. No more feeding tube, so for the first time in a decade, she can swim in the ocean — a rite of passage for Florida teens. She goes to school full time and is interested in studying botany, succulents, in particular. She’s had her driver’s license since she was 16 but now has enough energy to get behind the wheel of her red car and take off to the mall or to visit friends. For Logan, new lungs bring new freedom. “I can go anywhere if I want to,” she says. Through its partnership with United Therapeutics, Mayo Clinic hopes to preserve Logan’s freedom, and give it to many others. n

“I can go anywhere if I want to.” — Logan McCaskill

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SCIENCE OF HEALTH CARE DELIVERY U P DATE

Artificial Intelligence Gets Real Focusing the Power of IBM’s Watson on Helping Patients Ask people what they know about Watson, IBM’s cognitive computing system, and many might answer, “Didn’t it cream those all-star contestants on Jeopardy a few years ago?” The answer is yes, it most certainly dealt Jeopardy champs Ken Jennings and Brad Rutter an ego-bruising defeat in 2011. So how did Watson do it? And how can this technology improve health care? Watson is artificial intelligence in action. It mimics the way humans observe, interpret, evaluate and make decisions based on data. Because it can read everyday language, Watson can digest and understand vast amounts of information from

concept study applies a customized version of Watson to match patients more quickly with appropriate clinical trials, beginning with cancer. “In an area like cancer — where time is of the essence — the speed and accuracy that Watson offers will allow us to develop an individualized treatment plan more efficiently, so we can deliver exactly the care that the patient needs,” says Steven R. Alberts, M.D., chair of Medical Oncology at the Mayo Clinic Cancer Center. Clinical trials provide patients with access to new and emerging treatments, yet enrolling participants is one of the more difficult parts of research. The

Churning through and making sense of big data like this is what Watson does best. If the pilot is successful, it could unclog the enrollment bottleneck at Mayo and elsewhere. Despite Mayo Clinic’s best efforts, just 5 percent of its patients take part in studies. Nationally, the rate is even lower, at 3 percent. Through initiatives such as Watson, Mayo hopes to double the number of patients it can help through clinical trials. “Mayo Clinic is embracing cognitive computing because we realize this technology is transformational and necessary for the continued evolution of health care delivery,” says Nicholas F. LaRusso, M.D., a

“Mayo Clinic is embracing cognitive computing because we realize this technology is transformational and necessary for the continued evolution of health care delivery.” — Nicholas F. LaRusso, M.D.

books, articles, Web pages and other readily available sources in a single day. Importantly, the more Watson learns, the more its decision-making skills mature and improve. This capability sparked a big idea at Mayo Clinic: What if Watson became part of the clinical team? Through a pilot collaboration with IBM, Mayo researchers are finding out. This proof-of-

standard process is manual, with clinical coordinators sorting through patient records and conditions, trying to match patients with the requirements of a given study protocol. The high volume of studies complicates matters further. At any given time, Mayo Clinic conducts more than 8,000 human studies in addition to the 170,000 that are ongoing worldwide.

Mayo Clinic gastroenterologist, the project lead for the MayoIBM Watson collaboration and the Charles H. Weinman Professor. “In this pilot alone, using Watson will allow Mayo’s research and clinical teams to spend more time focusing on the needs of the patient rather than the laborious process of matching eligibility requirements to each patient’s situation.” n Volume 29, Issue 2 2015

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Sylvia’s Lem nade Stand One Little Philanthropist Raises Money for Molecular Research When Sylvia was around 4 years old, her mom and dad noticed she couldn’t pick up her left foot. They spent the next three years visiting various doctors around their home in North Carolina and getting tests. Though their local medical community is filled with talented doctors and caregivers, no one could tell them what was wrong with Sylvia. Local doctors assured them her overall health wasn’t threatened and they shouldn’t worry. But Sylvia’s mom and dad, Debra and Chris Buchanan, wanted answers. Having grown up in Minnesota, Debra suggested they head to Mayo Clinic in Rochester. During their first visit, the family met with neurosurgeon Robert J. Spinner, M.D., the Burton M. Onofrio, M.D. Professor of Neurosurgery, and neurologist Suresh Kotagal, M.D. They assured the family that Mayo would get to the bottom of the problem — it might not be treatable, but at least there would be an answer. “We hadn’t heard that before,” Chris says. “That’s one of the things I love about Mayo. As a family, having that attitude shared with us gave us a great comfort.”

An Answer The Buchanans came to Mayo armed with a stream of questions: What’s causing this? Will Sylvia be OK? Will it get better? Worse? “I’m that person who doctors don’t like seeing come in,” Debra says with a small self-deprecating laugh. “I’m not in the medical field, but I look

through medical journals to ask the right questions.” Usually when she displayed such knowledge, physicians patronized her and told her to stop looking on the Internet. “When we came here, it was the first time I was respected for that,” she says. “The doctor said, ‘Wow, good job, Mom.’ And it was unhurried. I was so used to having questions and having to hurry to get them in because the doctor is looking at the door. Here it seemed like not one nurse or doctor was rushed. I remember saying, ‘You let silence happen in the room,’ and the doctor responded, ‘That’s when the good questions come up.’” One of Debra’s most common questions was simply, “Do you really think you can figure it out?” They had been to so many doctors and had so many tests — MRIs of the knee, spinal scans, whole-body scans — Debra was skeptical an answer could be found. However, Dr. Spinner had seen similar cases before. He, fellow neurologist Michelle L. Mauermann, M.D., and radiologist Kimberly K. Amrami, M.D., had published articles describing how small lesions in the peripheral nerve could cause unexpected problems. Dr. Spinner suspected Sylvia’s defect showed up on previous imaging, but those reviewing the scans didn’t know what to look for or where. But he and Dr. Amrami knew what they were after. On a single slice on one of the many scans that Sylvia brought with her, they saw a tiny anomaly midthigh.

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“That’s one of the things I love about Mayo. As a family, having that attitude shared with us gave us a great comfort.” — Chris Buchanan On the family’s second trip to Mayo Clinic, Dr. Amrami performed more-detailed imaging of the area to confirm that a very small lesion was cutting off Sylvia’s peroneal nerve from the lower part of her thigh. Technically known as intraneural perineurioma, there are only 175 documented cases in the world.

A Promising Future Sylvia’s condition was inoperable — so, Sylvia’s foot wouldn’t get better. But the family finally had an answer, peace of mind from seeing the lesion on an MRI and an understanding of what was going on in her body. Dr. Kotagal recommended a conservative approach to treatment — surveillance and physical therapy. Then he told the Buchanans about molecular medicine and said that Dr. Mauermann and Christopher J. Klein, M.D., wanted to meet Sylvia.

Both Drs. Mauermann and Klein work in the Department of Neurology’s peripheral nerve unit and have conducted research with the Center for Individualized Medicine. One of the center’s focuses is on understanding the genetic causes of disease and matching a treatment that addresses the underlying molecular pathology. Recently Drs. Mauermann and Klein discovered that Sylvia’s condition is caused by a combination of inherited genes. They believe that digging deeper into cases like Sylvia’s — looking to family histories, taking genetic samples from family members — could lead to a new treatment. However, they are quick to point out that any possible treatment is still years away. “Patients with rare disorders help push research forward,” Dr. Mauermann says. “Given the small numbers of patients and benign nature of perineurioma, doing research studies and procuring funding are challenging. Patients like Sylvia bring perineurioma into the spotlight and help advance science. It encourages others like her to be evaluated, and the more patients we see with perineurioma, the more we learn about the condition.”

The Lemonade Stand When Sylvia heard about the research, she wanted to help. “They said it would be five years,” Sylvia says, and, with the typical impatience of a 9-year-old, adds, “I didn’t want to wait that long. I wanted to help them.” So she launched her own fundraising effort — a lemonade stand in front of her North Carolina home. She wrote a letter explaining her condition and that doctors were researching a cure, which Debra emailed to family, friends and neighbors. The first line was, “Hi! My name is Sylvia. I want to raise money for Mayo Clinic.”

Sylvia pours her dad a lemonade on the morning of the sale.

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On the morning of the lemonade stand, Dr. Kotagal contacted them from Vienna, where he was traveling, and wished them luck. They didn’t need it. As soon as they opened, customers lined up, and the line didn’t quit all day. People came from church. Sylvia’s swimming coaches stopped by. And her brother’s music teacher brought a whole family reunion. “There was a sticky trail from the driveway all the way back to the sink,” Chris laughs. Sylvia’s goal was to raise $100. But in the morning, after someone gave her a $100 check, she didn’t know what her goal should be. She raised $1,217 that day, and donations kept coming in. By the time they stopped, Sylvia had $1,730.60 to give to Mayo Clinic’s research.

The Family Code Word As researchers at Mayo Clinic work on a cure, Sylvia’s condition isn’t slowing her down. She keeps up with her older sister, Margo, and younger brother, Wilson. She competes in swimming, though she can’t point her foot in the right direction for a legal breaststroke. (Her mom and dad had to show league officials the rules allowing exceptions for disabilities to make sure Sylvia wasn’t disqualified.) Sylvia also does gymnastics and is working hard to compensate for her leg. For instance, instead of

leading with her left leg during cartwheels, she’s trained herself to begin with the right. Sylvia’s sister and brother are just as active, so the family members find themselves coordinating appointments, running around a lot and squeezing in dinner where they can. Since their trips to Mayo Clinic, a new phrase has entered their busy lives. “If something is especially good, we have a code word now,” Debra says. “We say, ‘It’s Mayo.’” As in, that lemonade stand sure was Mayo. n

Since Mayo Clinic provided Sylvia a definitive diagnosis, her mom, Debra, began developing a support network and patient information group for the 175 people around the world with the same condition. “Sylvia would really like to meet or know of someone like herself,” she says. To contact Debra, send an email to [email protected].

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UPD ATE SCIENCE OF HEALTH CARE DELIVERY

Old Drug or New? Determining Which Drug Works Better for Which Patients To the average TV viewer, it may seem like new drugs flood the marketplace daily. However, from the 1950s until just recently, warfarin was the only available anticoagulant drug approved by the Food and Drug Administration (FDA) to prevent blood clotting. One of the most common reasons people take an anticoagulant is to reduce stroke and heart attack risk related to atrial fibrillation, an irregular and often rapid heart rate that commonly causes poor blood flow. The condition affects 3 million Americans. Warfarin is so powerful and long-acting, though, that it may reduce beneficial clotting. Users must have regular blood tests to ensure they don’t experience excessive bleeding, especially in the gastrointestinal (GI) tract, where it can be life-threatening. Three new oral anticoagulants received FDA approval in just the past few years, and two of

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them — dabigatran (Pradaxa) and rivaroxaban (Xarelto) — do not require regular trips to the doctor’s office for blood monitoring. That convenience factor has caused a huge upswing in prescriptions, even though the newer medications can be more expensive than warfarin. Although cost and convenience are important considerations, researchers at the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery wondered if physicians had the medical evidence they needed to prescribe the best anticoagulant on an individual basis. The team first focused on addressing the relative risks associated with taking the drugs at different ages. “In our study, by using realworld, national data available from the OptumLabs data warehouse, we were able to determine that individuals

over age 75 have a much higher risk of GI bleeds than younger patients if using dabigatran or rivaroxaban instead of warfarin,” says lead author Neena S. Abraham, M.D., the center’s associate medical director in Arizona. “Our findings definitely point toward important age-related risk that merits consideration when doctors are making treatment recommendations. “We also saw that for patients under age 65, the newer agents appear to carry less risk of GI bleeds. At 65 this changes, and risk begins to increase until it exceeds the GI bleeding risk with warfarin at age 76 and older.” On an individual level, these findings can help guide the best medication choice and, on a national level, better inform conversations about health care value. n

Through OptumLabs, a research alliance between Optum and Mayo Clinic, the Mayo Clinic Kern Center for the Science of Health Care Delivery delves into data from millions of patients to better understand health care delivery over time, compare the effectiveness of care we provide today, and analyze the total cost of care for specific procedures or diseases.

“Our findings definitely point toward important age-related risk that merits consideration when doctors are making treatment recommendations.” — Neena S. Abraham, M.D.

Optum, a technology and health services business, brings analytical tools and data on 149 million UnitedHealth Group patients, including claims, laboratory values and demographic information. Mayo Clinic brings clinical data on roughly 5 million patients and patient-focused research expertise. All data is kept in a secure environment and references no personally identifiable information. Ultimately, this collaboration will help patients receive better care and help the health care industry define value through outcomes instead of volumes.

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UPD ATE MAYO CLINIC MODEL OF CARE

Not for the World

Attending His Daughter’s Wedding Meant Everything A woman walks up to the door of a home, puts one hand on the handle and stops. As she turns to the man being pushed in a wheelchair behind her, she raises one finger to her lips — the universal sign of “quiet.” She whispers, “Jonathan said wait one minute,” then opens the door a crack and slips her head in. Liking what she sees, she opens the door wide. On the other side, a young woman sees the man, her father, in the wheelchair. She gasps, “Oh, my God,” and throws her hands over her face, instantly weeping.

Andre Pearson knew his illness would prevent him from seeing his daughter get married. Then Mayo Clinic caregivers developed a plan.

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Someone says with a quivering voice, “Alexandra, I know. Daddy’s here.” Alexandra quakes with emotion. She walks down the hall in shock, crying, comes back, then leans in and grasps her father. “It’s all right,” he says with his frail arms around her. “Daddy is here. It’s all right.” Andre Pearson was not supposed to make it to his daughter’s wedding. Three months earlier, when the ordained pastor left Omaha, Nebraska, and arrived at Mayo Clinic in Rochester, Minnesota, his heart and kidneys were failing him. It looked like he didn’t have much longer to live, and at first, Mayo physicians were unsure if they could help. “Really, if you were just to look at everything on paper, you would say, ‘There’s really nothing here we can offer,’” says David L. Joyce, M.D. “Then when you meet Mr. Pearson and you realize what he’s capable of, then you start to think outside the box a little bit.” The care team repaired Andre’s heart valve and then implanted both a left ventricular assist device and a temporary right ventricular assist device to help his heart pump. It was the first time Mayo Clinic had ever implanted both devices in one patient.

“He was kind of a pioneer and willing to take on that uncertainty,” Dr. Joyce says. “And it actually worked out beautifully.” But the surgery was very invasive, and during recovery, Andre seemed too weak to travel to his daughter’s wedding in California. Besides that, he was tethered to a machine and needed ongoing dialysis. He resigned himself to watching it on video. Then one day care coordinator Angie Luckhardt walked into his room and said, “I have some good news. We have a plan for you to go to your daughter’s wedding.” The impact of the news caused tears to flow from both him and Angie. The care team arranged for a haircut and tuxedo fitting for Andre, then booked his flight. Physician assistant Sarah Schettle traveled with him to make sure he had the care he needed. Now in California, amid sun-drenched palm trees and blue skies, Andre holds his daughter’s hand as she’s about to walk down the aisle. He’s in a tuxedo; she’s in a cream-colored wedding dress. Her other hand holds a bouquet of white flowers. He looks at her smiling face and asks, “Do I look all right?” She nods and laughs and weeps. “Yes.” n

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2015 Mayo Clinic Board of Trustees EXTERNAL TRUSTEES Linda G. Alvarado President and CEO Alvarado Construction, Inc. Denver, Colo. Bradbury H. (Brad) Anderson Retired CEO and Vice Chairman Best Buy Co., Inc. Richfield, Minn. Thomas J. (Tom) Brokaw Special Correspondent NBC Nightly News New York, N.Y. Armando Codina Executive Chairman Codina Partners LLC Coral Gables, Fla. Mary Sue Coleman, Ph.D. President Emerita University of Michigan Ann Arbor, Mich. Samuel A. Di Piazza, Jr. Former Vice Chairman, ICG Citigroup New York, N.Y. Michael E. Dougherty Chairman Dougherty Financial Group LLC Minneapolis, Minn. William W. (Bill) George Professor of Management Practice Harvard Business School Cambridge, Mass. George C. Halvorson Retired Chairman and CEO Kaiser Foundation Health Plan, Inc. Oakland, Calif. Roy A. Herberger, Jr., Ph.D. President Emeritus Thunderbird School of Global Management Phoenix, Ariz. Ronald L. Olson Partner Munger, Tolles & Olson, LLP Los Angeles, Calif. Aulana L. Peters Retired Partner Gibson, Dunn & Crutcher, LLP Los Angeles, Calif. Michael K. Powell President and CEO National Cable & Telecommunications Assn. Washington, D.C.

Eric E. Schmidt, Ph.D. Executive Chairman Google Inc Mountain View, Calif.

Veronique L. Roger, M.D. Consultant, Cardiovascular Diseases Mayo Clinic

Randolph Steer, M.D., Ph.D. Biotechnology Consultant Desert Health Enterprise Rancho Mirage, Calif.

Gianrico Farrugia, M.D. Vice President, Mayo Clinic CEO, Mayo Clinic in Florida

Diana Taylor Vice Chair Solera, Capital LLC New York, N.Y. Charles B. (Charlie) Tomm President and CEO The Brumos Companies Jacksonville, Fla. INTERNAL TRUSTEES Daniel J. Berry, M.D. Chair, Orthopedic Surgery Mayo Clinic Jeffrey W. Bolton Vice President and CAO Mayo Clinic Steven J. Buskirk, M.D. Consultant, Radiation Oncology Mayo Clinic in Florida Wyatt W. Decker, M.D. Vice President, Mayo Clinic CEO, Mayo Clinic in Arizona Bobbie S. Gostout, M.D. Consultant, Gynecologic Oncologist Chair, Obstetrics & Gynecology Mayo Clinic Eddie L. Greene, M.D. Consultant, Nephrology Mayo Clinic Charles (Michel) M. Harper, Jr., M.D. Executive Dean for Practice Mayo Clinic Pamela O. Johnson, R.N. Chair, Department of Nursing Mayo Clinic Lois E. Krahn, M.D. Consultant, Psychiatry Mayo Clinic in Arizona Dawn S. Milliner, M.D Consultant, Nephrology Mayo Clinic John H. Noseworthy, M.D. President and CEO Mayo Clinic

Philip R. Lee, M.D. Whitney MacMillan Joan D. Manley J. Willard Marriott Jr. Ambassador Donard F. McHenry Newton N. Minow Patricia E. Mitchell Honorable Walter F. Mondale Marilyn Carlson Nelson Luis G. Nogales Hugh B. Price Lee R. Raymond, Ph.D. Frederick W. Smith Donald M. Stewart, D.P.A. Anne M. Tatlock Paul A. Volcker Robert C. Winters Elias A. Zerhouni, M.D.

Mary Jo Williamson Chair, Department of Practice Administration Mayo Clinic ADDITIONAL OFFICIALS Kedrick D. Adkins, Jr. Chief Financial Officer Chair, Department of Finance Mayo Clinic Michael Camilleri, M.D. Executive Dean for Development Mayo Clinic Chris W. Gade Director, Executive Office Mayo Clinic

MAYO CLINIC MAGAZINE Executive Editor: Brett C. Vermilyea Contributors: Melissa Abrams, Chris J. Bahnsen, Dennis F. Douda, Hoyt J. Finnamore, Erin N. Flaherty, Colin Fly, Marcia R. Mattson, Jim T. McVeigh, Cheri P. Moon, Robert J. Nellis, Matt Russell, Vivien J. Williams

Cheryl J. Hadaway Chair Department of Development Mayo Clinic Joshua B. Murphy, J.D. Secretary Chief Legal Officer Chair, Legal Department Mayo Clinic

Photography: Clifton Brewer, Peggy Chihak, Dan Hubert, Joseph M. Kane, Matthew C. Meyer, Jodi O’Shaughnessy-Olson, Pete Pallagi, Glenn Triest, Gosha Weivoda

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