mayo clinic magazine - vol. 31, no. 1, 2017, issue 1 ... this issue of mayo clinic magazine, you...

Caring for Karter

Down to the Roots

A Chance Encounter

LOOKING FORWARDMayo Clinic’s first face transplant recipient

VOLUME 31 ISSUE 1 2017

Your Compassion Helps Patients Every Day. Thank You.

Mayo Clinic’s biggest asset is its people — the staff, patients and benefactors who believe in the organization’s mission to work in the spirit of respect, integrity, compassion, healing, teamwork, innovation, excellence and stewardship.

The spirit of giving strengthens Mayo Clinic in extraordinary ways. It supports the 1.3 million patients the organization serves annually; the more than 4,000 world-class physician-scientists, science faculty and research personnel who collaborate to solve complex questions in virtually every field of medicine; and the training of future leaders in medicine and research.

None of this is possible without benefactors, who see the return on investment in the form of lives saved and tomorrows changed. From grateful patients to corporations and foundations, Mayo Clinic is honored to have inspired support.

These gifts of kindness and hope propel Mayo Clinic’s efforts in the final year of YOU ARE … The Campaign for Mayo Clinic.

To join, please visit mayoclinic.org/give.

2016 TOTALS THE CAMPAIGN FOR MAYO CLINIC

88%

224,000+

124,000+

FROM GRATEFUL PATIENTS

WHERE YOUR GIFTS ARE INVESTED:

34%ENDOWMENT

55%OPERATING

11%CAPITAL

GIFTS

BENEFACTORS

512,000,000FUNDS RAISED

Volume 31, Issue 1 2017 1

compassion:

4 Andy’s JourneyWyoming man becomes Mayo Clinic’s first face transplant recipient, also increasing the odds for all transplant recipients

20 Why We Give

22 Down to the Roots Persistence powers Mayo Clinic’s approach to adult-derived stem cell therapies

26 The Heartbeat of a Family A family from East Asia gives back after an exceptional patient experience

34 An Inspiring Chance Encounter Terrified and alone, an Alabama woman met three people along the way to Mayo Clinic who changed her life

40 ‘You don’t forget people like that’Massachusetts woman gives generously following compassionate care more than 60 years ago

44 Caring for Karter Genetic sleuths never give up hunt to identify Minnesota boy’s condition

50 Genes Made PersonalChicago benefactor sees Mayo’s commitment to patients, promise of individualized medicine

52 Untangling Alzheimer’s Mayo Clinic’s leading voice in the fight against Alzheimer’s disease shares how the institution leads the way forward in research

58 Stories of HopeMayo Clinic’s proton beam technology helped two teenagers overcome cancer to continue pursuing their passions

62 Sweet SoundsMusician thanks Mayo Clinic through ‘Dr. Tango’ composition

On the Cover: Andy Sandness, 32, looks forward to his life as just another face in the crowd after spending a decade with a serious facial deformity. He became Mayo Clinic’s first face transplant recipient in June 2016.

Mayo Clinic Magazine Volume 31, Issue 1

58 26 22

2 mayoclinic.org/give

“How does Mayo Clinic run so efficiently?” That’s a question I often get, and it doesn’t have a simple answer. A key element is the integrated clinical practice. Other aspects of the clinic’s culture also serve exceptionally important roles, though many are difficult to measure.

Our primary value — the needs of the patient come first — drives everything we do. And to this end, the human connections we exhibit in compassionate care are embedded in our 150-year history of treating patients and family members with sensitivity and empathy.

Compassion at Mayo starts with a welcoming smile from a volunteer at the entrance and a warm and professional greeting from the desk staff. It continues with our physicians and care providers who spend ample time with patients. Our Mayo Clinic Model of Care includes providing an unhurried examination, as well as taking the time with patients and their families to adequately explain the diagnosis and treatment options.

In this issue of Mayo Clinic Magazine, you will read stories about how Mayo Clinic demonstrates compassion every day, in little ways and big ways. Our cover story is about Andy Sandness, who asked Mayo to help him become just another face in the crowd through a face transplant procedure after 10 years of virtual solitude. We also share an inspiring story about the compassion of strangers who took a Mayo patient under their wings, ensuring that she wasn’t alone. A family profile sheds light on an operation for a relatively rare

heart condition and the lengths a Taiwanese family went for their daughter and sister, Vivian Tsai, to receive the care she needed to regain her ability to do basic activities such as talk and eat.

We believe the future of medicine is dependent not only on advances in science and technology but also on compassion, an essential ingredient in sparking hope and healing for our patients.

Friends and supporters make these stories and so many more possible. On behalf of Mayo Clinic and the people we serve, thank you for your generosity.

What does it look like at Mayo Clinic?

Michael Camilleri, M.D.Executive Dean for DevelopmentAtherton and Winifred W. Bean ProfessorProfessor of Medicine, Physiology and PharmacologyMayo Clinic Distinguished Investigator


Andy’s JourneyWyoming man becomes Mayo Clinic’s first face transplant recipient


“I just felt … normal,” he recalls. “I didn’t even think about it until the next morning when I woke up. Nobody stared at me. Nobody questioned me. Nothing happened. I felt like another face in the crowd.”

For a decade, it was a feeling that eluded Andy as children stared and whispered while the eyes of adults lingered a bit longer, trying to process what they’d seen.

For Andy, it was another ever-present reminder of an impulsive mistake he made in 2006.

Looking BackAndy, now 32, grew up in scenic Wyoming as an avid outdoorsman — enjoying hunting, fishing, swimming and more. But Andy also struggled with symptoms of depression in his late teens and early 20s.

Then one December night, he acted on his suicidal thoughts. He pointed his hunting rifle under his chin and pulled the trigger. Andy

destroyed his upper and lower jaw, nose, upper palate, cheekbones, part of his eye sockets and all but two teeth.

“The only thing I got to see was him coming out of the emergency room … with a straw coming out to breathe,” says Andy’s father, Reed.

When Andy woke up in the hospital, he was grateful to be alive, but he knew his life would never be the same.

“My mom was there by my bedside,” Andy says. “I’ll never forget the look of pain that she had in her eyes that day.”

Andy survived, but had a serious facial deformity. He had no lips to suck liquids. He couldn’t eat anything hard such as nuts, cereal or even potato chips. Eventually, doctors fitted him with a prosthetic nose, but it didn’t look good, it would fall off often, and it was not a natural replacement for his nose.

The social stigma was even worse. His deformity was obvious to anyone who looked at him.

Andy Sandness decided on a whim to take in a hockey game on a trip to the Twin Cities. He headed to the arena, bought a box of popcorn and watched intently among nearly 18,000 other fans.


“If I was at Wal-Mart or the mall, I’d avoid situations with young children, just because I didn’t want to scare them,” Andy says. “If I would see children coming, I would either look away from them or basically just hide.”

Though adults were more restrained, he knew how his appearance affected people.

Andy was stabilized and taken to Mayo Clinic in the immediate aftermath of the incident. Samir Mardini, M.D., was the reconstructive surgeon on call and began the process of rebuilding Andy’s face, including the bony structures as well as the soft tissues of the face.

“Andy is a very special person,” Dr. Mardini says. “I tell patients who have major deformities that require reconstruction that we’re going to go through a journey together and that I’m going to be there for you the entire journey. You need to also be strong, patient and persevere with me through this journey. When we have difficult times, we will get through them together.

“I had this conversation with Andy, because I knew he had a lot to go through. From early on, I felt a bond with Andy. I felt that he was the type of person that would go through this journey with me.”

Over the next 10 years, Dr. Mardini and Andy worked together. Dr. Mardini did what he could, but conventional techniques couldn’t restore Andy’s nose, mouth, teeth or overall appearance to an optimal level.

As a result, Andy isolated himself with family and a few close friends. He took a job in the Wyoming oil fields, where he didn’t have to be around many people, and he spent a lot of time in the woods by himself, hunting and fishing.

He wanted a family and kids, but his appearance made even just dating a dream.

Then, one day nearly five years ago, Dr. Mardini, surgical director of the Essam and Dalal Obaid Center for Reconstructive Transplant Surgery, informed Andy that there may be another option — face transplantation.

Left: Andy grew up in Wyoming as an avid outdoorsman. This undated photo shows him before his injuries in 2006. (Courtesy Andy Sandness via AP)

Right: In June 2016, Andy waits for his face transplant, one of the rarest surgeries in the world, after a self-inflicted gunshot wound had destroyed his mouth and nose.


The DecisionOne of the first things Dr. Mardini told Andy about face transplantation was that any patient who was considering it would have to understand it very well.

Dr. Mardini shared the knowledge he had at the time — the procedure could restore many structures in the face to improve appearance and function, but it’s far from perfect and, like any transplant, there were real risks of rejection and other complications.

Even under the best-case scenario, Andy would have to take a daily regimen of immunosuppressant drugs for the rest of his life, forcing him to make life changes to avoid illness.

Andy talked it over with friends and family. At Mayo Clinic, he worked with other experts in transplant including Hatem Amer, M.D., medical director of the Essam and Dalal Obaid Center for Reconstructive Transplant Surgery, as well as experts in psychiatry, psychology, social work, pharmacy, nutrition and more.

Dr. Mardini made it clear that each member of the Mayo Clinic team, from dietitian to transplant physician, had veto power — if they weren’t satisfied that Andy was as informed as he could be, there would be no transplant.

Andy rose to the challenge, learning everything he could about the procedure and its potential implications.

An Integrated ApproachMayo Clinic has the largest integrated transplant program in the United States. On average, its more than 150 surgeons and physicians on campuses in Arizona, Florida and Minnesota perform more than 1,000 solid organ transplants each year — about three a day.

But physicians in the Mayo Clinic Essam and Dalal Obaid Center for Reconstructive Transplant Surgery and the Mayo Clinic Center for Regenerative Medicine knew they’d have to develop a lot more expertise to help Andy.

“A face transplantation is a combination of so many other surgical procedures that we do routinely, including eyelid surgery, jaw surgery, facial nerve surgery, aesthetic surgery, as well as reconstructive microsurgery,” Dr. Mardini says.

Dr. Mardini gathered a large team of Mayo Clinic experts. Those involved in Andy’s face transplant surgery included plastic surgeons and an ophthalmologist. Preoperatively and postoperatively, specialists included those in dentistry, transplant medicine, dermatology, psychiatry and psychology, critical care, anesthesiology, radiology, infectious diseases, rhinology, tissue typing and immunology, regenerative medicine, neurology, nursing, physical medicine and rehabilitation, social work, and speech and language pathology, among many others.

The team also included staff from LifeSource, the federally designated organization for organ donation in Minnesota, North Dakota and South Dakota.

A team of seven surgeons and more than 40 operating room staff members transplanted the entire lower face. This included the meticulous mapping and preserving of vital facial nerves on Andy and his donor to ensure proper facial movement.


The PreparationTo prepare for Mayo Clinic’s first face transplant, Dr. Mardini and his team spent 50 weekends perfecting the procedure itself in the human anatomy lab. They collaborated with a group of engineers with expertise in taking CT scans of the head and making models that allow the surgeons to perform the surgery virtually — meaning the bone cuts that occur during the face transplant are performed on a computer before the actual surgery starts. The engineers then produce guides that help during the surgery. The guides clip on to the bones of the donor and the recipient, and they help make the cuts in the bone exactly the way they were planned during the virtual surgery. When this is done as planned and the face of the donor is transferred to the recipient, the bones fit perfectly.

After more than three years of rehearsing, the team was ready.

56 HoursDr. Mardini was on his way to Las Vegas for a meeting in June 2016 when he received the call just before boarding the plane — a match became available.

He immediately returned to Mayo Clinic and reached out to all the team members, beginning the process of virtual surgical planning with the same team of engineers that had been working with him on the prior rehearsals. All team members were in town, a stroke of good luck.

As they had practiced, the procedure started out as two simultaneous operations — one to procure the face of the donor and one to prepare the recipient, Andy.

According to LifeSource, the donor was a 21-year-old man who fatally shot himself. Despite the family’s grief, the donor’s wife discussed her husband’s wishes to donate his organs and tissues — which included his heart, lungs, liver

The 56-hour transformational surgery started shortly before midnight Friday and was over early Monday morning.

“You have so much adrenaline and enthusiasm during the surgery that hour 10, 20, 30 and beyond feel pretty much the same,” Dr. Mardini says.


and kidneys. At that point, LifeSource additionally raised the possibility of donating facial tissue to a patient on the waiting list.

“Organ transplantation is only possible due to the generous gifts of life from donors. There are not nearly enough organs for patients waiting for them, and many of our patients die before a lifesaving organ becomes available,” says Charles B. Rosen, M.D., director of the Mayo Clinic Transplant Center. “We encourage everyone to discuss organ donation as part of their end-of-life plans and to share that decision with friends and family members.”

The Mayo Clinic team of seven surgeons and more than 40 operating room staff members transplanted the entire lower face, including the nose, jawbones, teeth, cheekbones and all skin

from ear to ear and down below the chin. Except for the tongue, everything below the eyes was transplanted.

A major aspect of the surgery was identifying which nerves control which functions — smile, eyelid closure, mouth closure, lip depression — on both donor and recipient, then matching them up.

“The nerve surgery itself was happening at hour 30, 35, which is the most intricate part of the reconstruction,” Dr. Mardini says. “But you have so much adrenaline and enthusiasm during the surgery that hour 10, 20, 30 and beyond feel pretty much the same.”

After 56 hours in the operating room, the team had completed Mayo Clinic’s first face transplant — the next step to give Andy back his life.


Andy’s New FaceAndy sits in his hospital room, packed with family, doctors, nurses and more.

A fresh line of stitches surrounds his entire face. It starts at his throat, works its way up to his ear, under his hair, arcs to his eye and under it, curves over his nose then takes the same path across the other side, back to his neck.

It’s been three weeks since Dr. Mardini led the team who conducted Mayo Clinic’s first face transplant on Andy.

The time is right at this point in Andy’s recovery for him to see his new face for the first time — his mental health is strong and the swelling has gone down, so Andy will actually see his new image and not a bloated misrepresentation.

Andy begins to write on a yellow notepad — it’ll be several more weeks before he gains enough muscle control to talk clearly or even smile. The room goes silent.

He hands the notepad to Dr. Mardini. It says, “The gratitude I have for everything that everyone has done for me is remarkable.”

Dr. Mardini exhales, swallows hard a couple of times and says quietly, “We appreciate that, Andy.”

A lot of hard work and countless hours have gone into making this moment happen. As Dr. Mardini hands Andy the mirror, the doctor can barely contain his excitement.

Dr. Mardini laughs a little, “OK, Andy, how are we going to do this? Here, you take the mirror. You just do it.”

Andy hugs a member of his care team. “This is why we’re all in

medicine, because we love these moments,” says Dr. Mardini.

Three weeks after his face transplant procedure, Andy takes a mirror from Dr. Mardini and sees his image for the first time. “It sank in that I’m finally normal again,” Andy says.


“Wow,” Andy says softly upon looking at the reflection, eyes locked deep into the mirror. Andy sets it down and looks at Dr. Mardini. Everyone can make out what he says — “This is unbelievable.”

He lifts the mirror again, his eyes moving up and down, and he turns his head little by little. Then, he begins to write. Dr. Mardini reads his words to the room — “I can’t believe it. Unbelievable!”

Dr. Mardini turns to grab a tissue to wipe away tears as Andy keeps writing — “Far exceeded my expectations.”

Dr. Mardini’s voice nearly fails him as he looks at Andy and says, “You don’t know how happy that makes us feel.”

Dr. Amer says Andy’s transplant was the culmination of complex care that dates all the way back to the guiding principles of the Mayo brothers.

“Throughout the entire journey, we have shared Andy’s concern and sympathy for the donor family who have made this amazing gift possible,” says Dr. Amer. “Their selfless gift gives hope to so many other people who are living reclusively, have limited function and are socially isolated due to facial deformities.”

The Mayo Clinic Essam and Dalal Obaid Center for Reconstructive Transplant Surgery was supported by a generous gift from Tarek Obaid. The Essam and Dalal Obaid Foundation was established in honor of the Obaid family’s values — particularly hope — which they consider the most powerful emotion, providing the fortitude to persevere and the well from which people draw strength.

The New AndyAndy spent several more months at Mayo Clinic as swelling continued to go down and he worked with speech and physical therapists. In February 2017, he returned home to Wyoming.

“Without the donor and the donor family, none of this is possible,” Andy says. “I can’t say thanks enough for what they did and what they gave me.”

Already, he’s noticed differences all around him — as an anonymous hockey fan, browsing a sports store at the mall and especially when he interacts with kids.

“I jumped on the elevator coming to an appointment and there was a little kid in a stroller with his mom,” Andy recalls. “He looked at me, stared a second, and went back on with playing with his toys. Right then I knew we had achieved exactly what I wanted.”

Andy reflects on his past but is hopeful for his future, grateful a hasty mistake more than a decade ago is finally in the past.

“I am looking forward to getting out there and enjoying the things I missed. I missed 10 years of my life. I’m going to do a lot of things I wasn’t able to do before, like go swimming, chew my food, kiss my niece and nephew, and go to their wrestling tournaments. I’ll just fit right in with the crowd,” Andy says. “This is the new me.”

For more information about organ donation, please visit the United Network for Organ Sharing at unos.org or find your state’s registry at organdonor.gov.

To hear from Andy himself about his experience or learn more about face transplant at Mayo Clinic, please visit newsnetwork.mayoclinic.org/mayo-clinic-announces-first-face-transplant.


Andy remains mindful of the donor family’s

selfless gift. “Without the donor and the donor family, noneof this is possible,”

he says. “I can’t say thanks enough for what they did and

what they gave me.”

Mayo Clinic performs more transplants than any other organization in the country.

That experience allows Mayo Clinic scientist-physicians to study stem cells and

personalize drugs to fight organ rejection and increase the number of viable lungs.

Increasing the Odds

Immune-Building Stem Cell Research

In the 1970s, when Cesar A. Keller, M.D., started his career in pulmonology, lung transplantation was widely considered science fiction. Now, lung transplantation is a lifesaving option for thousands of people every year, but it’s not perfect, Dr. Keller says. For adults, the five-year survival rate is about 55 percent, according to 2008–2015 lung transplant data from the Department of Health and Human Services.

With the help of philanthropic support, Dr. Keller and colleagues in the Mayo Clinic Center for Regenerative Medicine are trying to solve the most lethal imperfection of lung transplantation, a syndrome called chronic organ rejection.

Moving From Rejection to AcceptanceChronic rejection is considerably more common in lung transplantation than in other solid organ transplants. This is most likely due to environmental factors, which “the lungs are exposed to continuously, with every breath a patient takes,” Dr. Keller explains.

To solve that challenge, Dr. Keller and his colleagues are using tools that are today’s version of science fiction becoming science fact: stem cells and regenerative medicine.

Stem cells have the ability to repair damaged cells, transform into almost any cell the body needs and temper the immune system. So, Dr. Keller’s team launched an initial clinical study to evaluate safety and dose considerations of stem cell use in lung transplant patients who have chronic organ rejection. Researchers also gathered data on whether the treatment may have potential for improving lung function or slowing the progressive decline in function that occurs with chronic organ rejection.

The study used bone marrow-derived stem cells, which were infused through an IV and circulated to the lungs. The lungs “trap all of the stem cells,” Dr. Keller says. His team is preparing for a larger clinical study that will be based on the initial study results. “It took us seven years from our concept to delivering stem cells to the first patient,” he says. “It’s going to take at least another seven or eight years to see if this is successful.”


Developing Lung Restoration Capabilities

This research and other activities in the Center for Regenerative Medicine will be extended by another new technology that is coming to the Florida campus. In 2016, Mayo Clinic and United Therapeutics broke ground on a lung restoration center that could more than double the number of donor lungs viable for transplantation in the United States.

United Therapeutics is working to improve donor lungs and make them suitable for transplantation using “ex vivo lung perfusion technology.” The technology stores lungs in a specialized chamber and treats them with solutions and gases that can reverse lung injury and remove excess fluids.

Dr. Keller says the technology, which preserves lungs when they are outside the body, can be used to research the benefits of delivering stem cells to lungs before they are transplanted into a person. That strategy may help reduce immune system responses after the lungs are transplanted. “It was literally all science fiction when I began,” Dr. Keller says. “It’s interesting to think about where the field was when I started and to see these concepts become things we can apply.”

An Individualized Strategy for Stopping Organ Rejection

The effectiveness of immunosuppressant drugs is governed by a number of factors, but a major contributor is an individual’s genome. The genes that make up each person’s genome direct how a drug is metabolized and how it stimulates the immune system to accept the transplant.

While these drugs help a transplanted organ continue to function, they tax the rest of the body. For transplant patients, it is essential to understand the appropriate regimen of anti-rejection medications.

Mayo Clinic’s Center for Individualized Medicine is collaborating with a molecular diagnostics company to monitor patients after an organ transplant and improve the efficacy of these drugs by tailoring the treatment to an individual’s genome through the TOGETHER trial.

The initial focus is on immunosuppressant therapies for 250 kidney transplant recipients.

“Genomic analysis of blood can reveal early signs of rejection in transplanted kidneys,” says

Despite the use of immuno-suppressants, a person’s body at times can recognize the transplanted organ as a foreign object and attempt to protect itself by attacking the new organ. Even with immunosuppression medications, some transplant patients experience episodes of rejection.

There are two main types of rejection:

Chronic rejection occurs over many years because a patient’s immune system never fully accepts the transplanted organ and slowly damages it.

Acute rejection may occur from the first week after the transplant to three months afterward.


principal researcher Mark D. Stegall, M.D., the James C. Masson Professor of Surgery. “The potential clinical utility is to be able to monitor for rejection more frequently than is possible with surveillance biopsies and to individualize immunosuppression in transplant recipients.”

Among this study cohort, kidney transplant patients will have genomic testing at five intervals throughout their first postoperative year. These data points may help transplant care teams fine-tune immunosuppression drug regimens and improve patient outcomes.

“The promise of individualized medicine is that we can now use information found in a patient’s own genetic code to provide better, more personalized answers about their medical care. Through important efforts such as the TOGETHER trial, we can and will make that promise more of a reality for our transplant patients,” says Alexander S. Parker, Ph.D., the Cecilia and Dan Carmichael Family Associate Director for the Center for Individualized Medicine at Mayo Clinic in Jacksonville, Florida.

“The promise of individualized medicine is that we can now use information found in a patient’s own genetic code to provide better, more personalized answers about their medical care.”

— Alexander S. Parker, Ph.D.

The Organ Donation ChainA donation chain finds the best kidney for every patient, saving a life with every link. A chain is a great alternative to waiting for a deceased donor because living donor kidneys last twice as long as those from a deceased donor.

The chain starts with a nondirected living kidney donation to a compatible recipient. Compatibility is determined by factors like age, size, and blood and tissue type.

To continue the chain, the initial recipient’s intended donor — often a loved one or acquaintance whose kidney was not a good fit — donates to the next person in line who is compatible.

Every donor gets to help their loved one, and every recipient gets a well-matched kidney.


The donor chain ultimately ends when a recipient receives a new kidney but does not have a donor participating in the chain.

Chains can continue as long as matches are found. The average donation chain at Mayo Clinic includes six to nine transplanted kidneys.

Home Away From Home for Transplant PatientsThe Village at Mayo Clinic (above) The Tweed family donated their Brusally Ranch to Mayo Clinic in 1999. Proceeds from the sale of the ranch were used to build the Brusally Community House, which is surrounded by the Village at Mayo Clinic in Phoenix, Arizona.

The Gift of Life Transplant Home (top right) In 2015, to mark the 75th anniversary of Henry Zarrow’s first visit to Mayo Clinic, his foundation made a significant gift to support the transplant home and name the Gift

of Life Transplant House: Anne and Henry Zarrow Home in Rochester, Minnesota. It is one of two Gift of Life houses founded by Edward Pompeian, a transplant recipient and Mayo Clinic Principal Benefactor.

Gabriel House of Care (right) In 2008, Jorge Bacardi received a double-lung transplant at Mayo Clinic in Jacksonville, Florida. In recognition of this exceptional care, the Bacardi family made the lead gift to build the Gabriel House of Care.


Going digital allows closer interactions between patients, physicians

Anyone who visits the doctor’s office and receives a stack of paper questionnaires upon check-in is justified in thinking, “There has to be a better way.” This is the era of smart homes and self-driving cars, right?

The good news is medicine is catching up. More health care providers are switching to electronic previsit questionnaires and waiting room questionnaires delivered on mobile devices.

But the real challenge is ensuring these questionnaires are just as intelligent as the latest “smart” gizmo. This means being succinct, addressing concerns that are most relevant to the patient’s condition, adapting over time based on previous answers, and being linked to the electronic health record.

Researchers in the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery hope to achieve those goals by developing digital-based questionnaires — for use on iPads or smartphones as well as computers — for patients to complete while in the waiting room or even prior to coming to Mayo. Working with the International Consortium for Health Outcomes Measurement, the research team is using standardized condition-based questions that take into account different environmental, behavioral and genetic risk factors that are most important for patients with specific medical conditions.

The iPad questionnaires have rolled out to several practice areas at Mayo Clinic’s campus in Florida, including liver transplant. Currently,

No Paper, More Answers

“Our goal is to help drive conversations between patients and providers that will lead to more efficient and effective care. In addition, we believe this will improve satisfaction with the health care experience and reduce costs.” — Ryan J. Uitti, M.D.


the questionnaire is provided at the patient’s initial consultation and at the four-month and one-year post-transplant appointments. A separate iPad questionnaire assesses caregiver burden. Together, the questionnaires generate electronic patient-reported outcome measures (ePROMs) that are available immediately to the patient’s physician.

“Our goal is to help drive conversations between patients and providers that will lead to more efficient and effective care,” says Ryan J. Uitti, M.D., center site director in Florida. “In addition, we believe this will improve satisfaction with the health care experience and reduce costs.”

The ePROMs information has implications beyond an individual appointment. Because it is added to the electronic health record, it builds a more complete picture of the patient that will help not only their current physician but other providers they may see down the road.

Additionally, the information from many patients feeds into a collective database that is a gold mine for researchers seeking to improve outcomes for patients, including overall quality of life for liver transplant patients. For example, depending on the patient’s condition and health, a liver transplant can involve a whole or partial liver from a living or deceased donor. Over time and with enough patient records, ePROMs information could help predict an individual patient’s quality of life for each transplant option based on their condition.

“While many opportunities exist to use ePROMs, we are just getting started,” says Dr. Uitti. “We want to incorporate them in more ways and deliver them in more venues, obtaining information in the process that helps care for the individual patient today and improves patient care in the future.” n

IPad questionnaires have rolled out to several practice areas at Mayo Clinic’s campus in Florida, including liver transplant. The questionnaires generate electronic patient-reported outcome measures, known as ePROMs, that are available immediately to the patient’s physician.


Why We Give“ Mayo Clinic never stops

trying to be on the cutting

edge of everything they

do. When you face an

illness, it is the type of

organization you want

caring for you. Continued

innovation comes at a

cost, and we are proud to

be able to help fund some

of that innovation. Mayo

was there for us when we

needed them, and we are

honored to be able to give

something back.”

— Andrew and Elizabeth McPherson Orlando, Florida Major Benefactors


GIVING BACK

Annual GivingSome 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 Arizona, Florida and Minnesota. Six levels honor benefactors for annual philanthropy of $1,000 to $99,999.

RECOGNITION LEVELS

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

MAKING AN IMPACT

Cumulative PhilanthropyMayo 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. Mayo Clinic also recognizes those who support the institution’s work in Arizona and Florida in the Hall of Benefactors on the respective campuses.

RECOGNITION LEVELS

n Philanthropic Partners $10 million or moren Principal Benefactors $1 million to $9,999,999n Distinguished Benefactors $500,000 to $999,999n Major Benefactors $100,000 to $499,999

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.

LEAVING THE WORLD A BETTER PLACE

Planned GivingCommitted 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 Hall of Benefactors at all Mayo Clinic campuses.

Alumni PhilanthropyHaving 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 Hall of Benefactors at all Mayo Clinic campuses.

RECOGNITION LEVELS

n Mayo Alumni Laureates $100,000 or moren Doctors Mayo Society $10,000 or more;

bequest of $25,000 or more

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


Allan B. Dietz, Ph.D., never intended to be a scientist. His plan was to be a farmer, just like his father, grandfather and all the other Dietzes he knew.

“I was going to be a farmer at first. Then I was going to be a veterinarian because that’s what farm kids who like science did,” Dr. Dietz says.

But the rural Iowa boy’s plans quickly changed when he lost interest in agriculture right about the time he entered the doctorate program for genetics in the College of Veterinary Medicine and Biomedical Sciences at Texas A&M University.

“I liked the science so much I decided to just do the science,” he said.

Humbled DailyDr. Dietz joined Mayo Clinic in 1996 and has been a driving force behind the research into medical treatments using cell-based technologies, including adult-derived stem cells known as mesenchymal stem cells. Dr. Dietz is the director of the Human Cell Therapy Laboratory. The lab develops cellular therapies to treat a variety of conditions.

There are versions of the lab at all three Mayo Clinic campuses with support from the Center for Regenerative Medicine. When a physician-scientist explores if stem cells or other cellular therapies could be an option for a patient’s disease or condition, he or she works with Dr. Dietz’s team to develop the protocol and cellular product.

This readily available expert support reduces the time it takes to move research from the initial concept to the actual creation of a product that can be tested.

“This is not a solo effort,” Dr. Dietz says. “I really believe that I have the most caring, hardworking team of physicians, scientists and support staff ever assembled. I am humbled daily by the opportunity to work with them.”

Without the lab, physicians could spend years gaining the expertise in stem cells as well as necessary Food and Drug Administration approvals to move into clinical trials. With assistance from Dr. Dietz’s lab, that time can be cut significantly — to less than a year in some cases.

“Dr. Dietz provided invaluable leadership in guiding us through the very complicated path of obtaining FDA approval for our first stem cell trials. Without Dr. Dietz, these trials would not have been possible,” says neurologist Anthony J. Windebank, M.D. “He has endless enthusiasm and a very practical approach to getting things done efficiently.”

That practical approach began when Dr. Dietz was a boy.

“My ability to solve problems and my work ethic come from growing up on a farm,” Dr. Dietz says. “On a farm, you’re almost always limited in resources. So your first response to any problem is, ‘How can I solve it with the things I have?’”

Persistence powers Mayo Clinic’s approach to adult-derived stem cell therapies

Down to the Roots


Finding a Powerful ToolAt the time he was recruited to work at Mayo Clinic in Rochester, Minnesota, there was no regenerative medicine field as it is thought of today.

The laboratory’s history is rooted in transfusion medicine — the act of collecting and testing blood to be given to patients at Mayo Clinic. In the history of blood banking, researchers found it to be a powerful tool for healing. “When you differentiate blood, cut it into different pieces, such as platelets, packed red blood cells or plasma, you have more treatment options,” explains Dr. Dietz. “The body has tissues with powerful healing properties, and we just need to figure out how to tease them out.”

Recognizing the potential, Mayo Clinic sought a scientist who could take this research to the next logical extension and explore other opportunities for treatments created from human cells.

The field was so new and unexplored that Mayo Clinic did not even know how to advertise the position, but as luck would have it, there were a few researchers in transfusion medicine who knew a scientist known for taking on challenging puzzles.

That scientist was Dr. Dietz.

The Next StepDr. Dietz started his work on cancer vaccines with the Mayo Clinic Cancer Center, and after developing one approach, he spoke to his division leader at the time, S. Breanndan Moore, M.D., to find out what he thought his next project should be.

“Dr. Moore said, ‘Why are you asking me? You’ll know,’” Dr. Dietz recalls.

As it turns out, he did.

Dr. Dietz was inspired by a single case study reported in literature of mesenchymal stem cells dramatically reducing one patient’s inflammatory response to graft-versus-host disease, which is often fatal.

“That was all I needed as a flag to go: ‘That’s the new thing we’re going to work on!’”

What came next was a six-year odyssey to do all the background scientific work to develop these cells as a powerful drug platform. Collaborating with Dr. Windebank, who was working with patients with amyotrophic lateral sclerosis (ALS) — also known as Lou Gehrig’s disease — Dr. Dietz realized that these cells could be a “last great hope” for these patients.

A New InspirationBut it was not until the disease hit close to home that Dr. Dietz really understood what these patients and their families were facing.

As his team worked toward a clinical trial, Dr. Dietz was called into the office of Dr. Moore. “He was a great practical joker, so he sat me down and asked, ‘How’s that ALS trial?’ and after being reassured that it was going well, he asked, ‘Do you think I’ll be eligible for it?’ At first, I thought he was joking, but he had been diagnosed recently with ALS.”

Dr. Dietz and his team applied to do a one-patient trial so that they could bring the treatment more quickly to their friend and colleague. “He didn’t want us to do anything to compromise the integrity of what we were doing, but we framed it as fast as we possibly could,” Dr. Dietz says.

“My ability to solve problems and my work ethic come from growing up on a farm. On a farm, you’re almost always limited in resources. So your first response to any problem is, ‘How can I solve it with the things I have?’” — Allan B. Dietz, Ph.D.


The day they got the permission to run the single-patient trial, Dr. Dietz called Dr. Moore to share the good news. It was too late.

“He had been moved to hospice that morning,” Dr. Dietz says, his voice cracking. “So, Breanndan missed it.”

Devastated by the loss of his mentor, colleague and friend in 2009, Dr. Dietz and his team continued to plug away at the problem. This radical approach to treating patients rarely found support by traditional funding sources.

A Gigantic Unmet NeedWhile the Mayo Clinic Department of Laboratory Medicine and Pathology and the Center for Regenerative Medicine provided financial help for the Human Cell Therapy Laboratory, critical funding has come from benefactors. Dr. Dietz and the lab have done the heavy lifting needed

to develop multiple cell-based treatments. This development work is amplified as this new important class of cellular drugs gets into the hands of physicians. The combination of the Human Cell Therapy Laboratory developing these drugs and clinical experts using these drugs supported by like-minded donors is a powerful combination.

“There isn’t anybody who’s not touched by one of these terrible diseases, and we started out purposely picking really tough ones like brain cancer, ALS, multiple system atrophy and wounds that won’t heal, because there is nothing else for these patients,” Dr. Dietz says. “It is a gigantic unmet need.”

And Dr. Dietz’s stubborn work ethic propels him to meet those needs for patients.

“Science is very much like a farm: an endless amount of work and a new flavor of problems every day,” Dr. Dietz says. “It is up to us to figure it out.” n

Blood and bone marrow stem cell treatments/transplantsHealthy stem cells are injected into the body to produce new blood. Stem cells may be from the patient’s own body, a donor or from umbilical cord blood.

Regenerative cellular therapiesStem cells have the potential to rebuild healthy tissues, potentially helping people with heart disease, ALS, diabetes, Alzheimer’s disease, cancer, Parkinson’s disease, liver disease and more.

Cells as drugsStem cells can be used to influence other cells. For example, stem cells can be injected into joints to reduce pain and swelling, or into soft tissue to promote healing.

Testing of new drugs for safety and effectivenessQuality and safety of investigational drugs could be tested on stem cells that have been transformed into tissue-specific cells. Researchers can monitor for side effects in the cells from the drug before exposing a patient to it.

The Amazing Stem Cell

Stem cells are “master cells” and can be “guided” to become many other cell types.

Bone cell

Heart muscle cell

Brain cell

Blood cell

Self-renewed stem cell

Bone cell

Heart muscle cell

Brain cell

Blood cell


Bone cell

Heart muscle cell

Brain cell

Blood cell


Bone cell

Heart muscle cell

Brain cell

Blood cell


Bone cell

Heart muscle cell

Brain cell

Blood cell


Bone cellHeart muscle cell

Brain cell Blood cellSelf-renewed stem cell


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Strong family values, a journey across the world and a compelling experience

spurred the Tsai family to support research at Mayo Clinic focused on an

inherited heart disease known as hypertrophic cardiomyopathy. In 2015,

their transformative gift established the Paul and Ruby Tsai and

Family Hypertrophic Cardiomyopathy Research Fund.

The Heartbeatof a Family

From the beginning, Ruby and Paul Tsai (seated) taught their four children – Benjamin, Vivian, Eva and Joe

(standing) – to think beyond themselves.


Shaping Family ValuesPaul and Ruby Tsai raised their children, Joseph, Eva, Vivian and Benjamin, on the values of their faith, a dedication to excellence and the desire to give back to others. Paul and Ruby built the foundation of their family on these core values, teaching their children to always think beyond themselves.

Paul led by example. In 1953, he was accepted to Yale Law School and was the first graduate student from Taiwan to earn a doctor of juridical science from Yale.

When he returned to Taiwan, Paul served as a prominent attorney and government official. He played a key role in developing policies and legislation that advanced Taiwan’s international economic leadership, including laws that contributed to Taiwan’s Economic Miracle, a time of rapid industrialization and economic growth that began in the 1960s. In recognition

of his outstanding civil service, Paul received the President’s Award for Outstanding Performance in Government Services in 1963.

In 1965, he and his father, Ruchin Tsar, established a private law firm, Tsar & Tsai, which is now one of Taiwan’s largest firms, with a reputation for quality and innovation. As his personal success grew, Paul became a generous philanthropist. An internationalist at heart, Paul contributed generously to humanitarian organizations at home and abroad.

“We know our father was a generous donor to the Christian community and universities in Taiwan, the U.S. and Canada. Through his Rotary Club, he was also a big supporter of projects which helped children with polio,” says Vivian. “He did so much, but most of his acts of generosity have gone unrecognized.”

As for Ruby, she has also served as a strong role model for her children by devoting most of her life to

“When I found out I had a condition that was actually quite dangerous, my only goal was to improve my odds. Mayo Clinic is a place that gives you hope, delivers hope and makes your life better.” — Vivian Tsai


charity and volunteer work related to women’s rights and issues. In Taiwan, she’s served on the boards of the YWCA since 1974 and on the National Council of Women since 1990.

“My mother is so serious and diligent with her work at the nonprofit organizations,” says Eva. “My mother never talks about how much she contributes, but she is always concerned about the needs of others.”

Ruby is an active participant in the National Women’s League, serving as executive director for the past 15 years. As generous as her late husband, Paul, was, Ruby also supports Christian organizations with her time and financial resources. She takes great pride in her charitable work, because it gives her happiness to see the needs of others being met.

“It is more blessed to give than to receive,” says Ruby, reciting a cherished verse from the Bible.

These core values continue to be an integral part of the Tsai family — a piece of their genetic makeup.

A Journey Across the WorldWhen Paul was 82 years old, he recognized something seemed wrong with his youngest daughter, Vivian, who was beginning to experience familiar medical symptoms. She remembers the last words he said to her: “See a doctor. You have the same thing I have.”

Over time, Vivian’s symptoms had taken hold of her life, affecting her daily activities. She was not able to talk for more than 30 seconds without losing her breath. While eating dinner, Vivian would often lie down for half an hour before returning to her meal because she would become so tired and lightheaded. Vivian’s fear of having arrhythmia attacks also hindered her professional and social life. Gripped by this fear, she stopped driving and eventually sold her car. Vivian’s fear further intensified in 2014 after she experienced two episodes of transient ischemia attack, an episode that produces similar symptoms as a stroke but lasts only a few minutes and causes no permanent damage. Since then Vivian was afraid to go out by herself because she felt she would pass out on the street.

“The condition — and not having a clear idea of its cause — weighed on Vivian. It weighed on all of us,” says Benjamin, the youngest of the Tsai siblings.

In Taiwan, Vivian was told she had a heart condition called hypertrophic cardiomyopathy (HCM), but nobody really explained the problem to her. Realizing that her father’s words were a call to action, she decided to be her own health care advocate and turned to a friend who is a cardiologist in the United States. He urged her to visit Mayo Clinic. However, Vivian was skeptical, until she discovered an educational video on Mayo Clinic’s website of Hartzell Schaff, M.D., a cardiovascular surgeon, explaining the surgical treatments available to hypertrophic cardiomyopathy patients.

HYPERTROPHIC CARDIOMYOPATHY (HCM) is a disease in which the heart muscle becomes abnormally thick and is usually caused by a genetic mutation. The thickened heart muscle can make it harder for the heart to pump blood and can cause problems in the heart’s electrical system, resulting in life-threatening abnormal heart rhythms.

“Patients may have symptoms that include shortness of breath, heart palpitations or chest pain. A proper examination and further testing, such as an electrocardiogram and echocardiogram, are needed to make a diagnosis,” says Rick Nishimura, M.D., a cardiologist recognized as the Judd and Mary Morris Leighton Professor of Cardiovascular Diseases and Hypertension in Honor of Dr. Alexander Schirger.

“Most patients with this condition can be treated with medication, if given properly.”

Diagnosis can be challenging. The most common symptoms occur during exertion and include shortness of breath, chest pressure, fainting or fatigue, and heart palpitations.

HCM is often caused by a complex genetic mutation that can be inherited. Diagnosed individuals may consider genetic testing to assess risk to family members.

2/3 of patients find symptoms are relieved with medication. The remaining 1/3 need additional treatment and lifestyle changes.


In June 2015, accompanied by Benjamin and his wife, Emily, Vivian came to Mayo Clinic for an evaluation and diagnosis. She met with cardiologist Rick Nishimura, M.D., who gave her shocking news. Dr. Nishimura, Terrance D. and Judith A. Paul Director of MayoExpert, explained that Vivian had apical hypertrophic cardiomyopathy but had developed an undiagnosed apical aneurysm, which is a complication of apical hypertrophic cardiomyopathy. This development was causing her exercise limitations as well as putting her at high risk for blood clots and heart rhythm abnormalities.

He recommended Vivian meet with Dr. Schaff, the Stuart W. Harrington Professor of Surgery, to discuss the possibility of a procedure that she was told by physicians in Taiwan did not exist: a transapical myectomy.

This procedure, developed and perfected by Dr. Schaff and his team at Mayo Clinic, enables the surgeon to go in through the bottom of the heart to remove the diseased muscle in parts that were previously unreachable.

With renewed resolve, Vivian underwent surgery in September 2015.

“The strongest impression I got was how convicted Vivian was with wanting to get the surgery. She was very firm that this was what she wanted to do, and that speaks to her personality,”

says Joe, the eldest of the Tsai siblings. “After living under stress and uncertainty, Vivian wanted to take matters into her own hands.”

Almost every day post-surgery, Vivian went to Mayo Clinic’s Cardiac Rehabilitation Program within the Cardiovascular Health Clinic. She says she credits the program with having a pivotal effect on her recovery. After a two-month stay in Rochester, Vivian returned home symptom-free.

A Compelling Experience: A Transformative GiftAfter this lifesaving experience, Vivian says she felt compelled to do something meaningful — something that could show her respect and gratitude to the medical professionals and doctors who cared for her. Vivian shared this idea with her mother and siblings, who immediately agreed to join her.

“We all agreed that, if our father was alive, he would be happy to see this happen,” says Vivian.

In honor of their parents and the core values they instilled in each sibling, the family’s gift recognizes medical excellence and innovation at Mayo Clinic. Support from the Tsai family also honors Vivian’s care team, led by Drs. Nishimura and Schaff, by establishing two awards that help young investigators make significant career-long contributions to hypertrophic cardiomyopathy research and the care patients like Vivian receive.

The Tsai family’s endowment will also help Mayo Clinic understand the genomics of hypertrophic cardiomyopathy, study clinical outcomes of current patients and innovate to discover the best ways to treat patients.

The Tsai family’s gift helps perpetuate Mayo’s leadership in patient care, research and education in hypertrophic cardiomyopathy. Not only will this gift benefit Mayo Clinic patients but patients throughout the world, including East Asia, where the Tsai family calls home.

“Mayo Clinic is a place with the right mission, the right values, which attracts the right people,” Joe says. “Giving to Mayo was the perfect way for Vivian and for all of us to show our appreciation and gratitude.”n

Vivian Tsai and her mother, Ruby, at their Philanthropic Partner event at Mayo Clinic in October 2016.


Joe Tsai, Vivian Tsai, Mayo Clinic CEO and President John H. Noseworthy, M.D., Ruby Tsai, Benjamin Tsai and Emily Hantman Tsai, Benjamin’s wife, display the family’s storyboard in honor of their gift during their Philanthropic Partner event at Mayo Clinic in October 2016.

The Siblings’ Successes Following the example set by their parents, Joe, Eva, Vivian and Benjamin all have accomplishments of their own.

Passing the torch from father to son, Joe Tsai received his juris doctor degree from Yale Law School. He is now the executive vice chairman and co-founder of the New York Stock Exchange-listed Chinese e-commerce leader Alibaba Group.

Eva Tsai, a graduate of Yale, follows in her mother’s footsteps and is active in the YWCA community in Taipei and the Yale Club.

Vivian Tsai, also a Yale alumna, founded an investment company in Taipei, which works with the Tsai family’s Family Office in Hong Kong to manage its assets.

Benjamin Tsai, who holds a Ph.D. degree from the University of Chicago, lives in Washington, D.C., where he worked as a diplomat for several years.


More than 16,000 employees of Mayo Clinic Health System, like Wabasha, Minnesota, family practice physician Anne Liwonjo, M.D., bring Mayo Clinic’s values to 650,000 patients annually in over 60 communities in Georgia, Iowa, Minnesota

and Wisconsin. “Compassion means putting the patient first,” Dr. Liwonjo says. “I think of how I would want to be treated and how I would want my family members to be treated.”


inspiring

encounter

an

chance

Kerri was at an Alabama airport gate on her way to a six-week post-surgical appointment in Rochester, Minnesota, when her sister, Richi Reynolds, became violently ill just prior to boarding the plane.

With Kerri’s husband, Tim, already managing a business and assisting her elderly parents, Kerri was faced with a trip to Mayo Clinic alone.

“I told Richi to call Tim to pick her up, and I’d be fine. All the while, I was trying not to let her see how scared I was,” says Kerri.

Kerri held back tears until she was on the plane. Then, she cried quietly all the way to her stopover in Chicago.

“I’m very spiritual, and I prayed for someone to help me through this … even for someone to just talk to me. I was terrified to be going through this alone,” she recalls.

Faith, Hope and StrengthKerri, a 52-year-old mom, has Behcet’s syndrome, a rare genetic disorder causing inflammation in the blood vessels. Kerri’s symptoms didn’t begin to appear until about age 22 and were manageable for many years. However, due to the disease, she was forced to retire in 2011 from the job she loved as a social worker.

In 2012, Kerri was diagnosed with chondroma, a benign bone tumor, in her knee. She had it

surgically removed. A year later, it returned. Again, Kerri had it surgically removed. This second surgery resulted in paralysis of Kerri’s right leg.

Six weeks post-surgery, Kerri’s oncologist detected the tumor had returned a third time. Her physicians then referred her to Mayo Clinic, where she consulted with a team including Franklin H. Sim, M.D., an orthopedic surgeon; Scott T. Persellin, M.D., a rheumatologist; and Robert J. Spinner, M.D., a neurosurgeon.

Since hormones contribute to Behcet’s flare-ups, Kerri’s local physician recommended a hysterectomy. He discovered a second primary cancer in her ovaries.

Immediately following her recovery and cleared of the ovarian cancer, Kerri flew to Rochester to focus on the tumor in her knee.

Kerri’s Mayo team discovered that her cancer was actually a chondrosarcoma, a rare malignant cancer that begins in the bones and can return repeatedly. Dr. Spinner, the Burton M. Onofrio, M.D. Professor of Neurosurgery, was able to repair her peroneal nerve to restore feeling in her leg. Dr. Sim removed the chondrosarcoma and rebuilt the top of the fibula where bone was removed. And Dr. Persellin addressed the Behcet’s.

Kerri Clemons was terrified after two tumors in two years. Now, she was unexpectedly alone, too.


I’ll Never Forget That BraceletAt a layover at one of the world’s busiest airports, Chicago’s O’Hare, Kerri sat with her leg outstretched in a full leg brace across from two women and a man who were talking and giggling. As Kerri awaited her flight to Rochester, she began to cry again, thinking of the days ahead and how she would manage by herself.

“Between my tears, a blue sparkle bracelet caught my eye,” says Kerri. “I looked up and said, ‘I love your bracelet,’ and that’s all it took.”

Kerri shared her story with Paulette and Joe Maslick and Laree Perez, who were on their way to Mayo Clinic. The three, who are members of Mayo Clinic’s Leadership Council in Arizona, were researching artwork in hopes of commissioning a statue on the Phoenix campus. “At this time, we didn’t have a concept of the statue and were beginning to question if we should really embark on such a big project,” says Laree.

We Got YouKerri explained how worried her family was that she was traveling by herself. Paulette asked Kerri to call her mom. Paulette recalls, “I told her mom not to worry — that we got her — and she’s just fine.” Paulette then also spoke to Kerri’s husband and sister, assuring them she was in good hands. Kerri says, “My husband was like, ‘Who are these people? Are you sure you’re safe?’”

There were snow drifts several feet high and negative temperatures when they landed in Rochester. “There was no way we were going to let Kerri take a cab from the airport and try to manage her luggage,” says Paulette. Artist Daniel Anthony joined the group and drove them to their hotel. “The men helped me check into the hotel and carried my luggage. Paulette and Laree helped me in my room,” recalls Kerri. They exchanged information, and as Kerri settled in for the night, her new friends called to check on her.

Kerri Clemons has been battling a series of complex illnesses over the years including paralysis. Her daughter, Haley, and husband, Tim, have been with her through it all. “I still can’t believe how much feeling I got back in my leg after surgery. I was completely scared I would never be able to walk without a brace again,” Kerri says. “The surgery I had at Mayo changed my life.”

Ashlee Cooper Photography


I Thought I’d Never See Them AgainAs Kerri entered the restaurant for breakfast the next day, she was surprised to once again be greeted by four smiles. “My new friends told me to sit down as they again took care of me — asking me what I wanted from the buffet line,” says Kerri.

“These four were like my social workers. They took me in. They did it because they wanted to and had the heart to do it,” says Kerri. “They have brought me so much hope and how they view people has helped me.”

The new friends chatted about their lives and the artwork that adorns Mayo Clinic.

“In my trips to Rochester, I would often enjoy the mesmerizing effects of the Barbara Woodward Lips Atrium in the Charlton Building. I often sought out quiet places to enjoy the artwork, to rest between appointments, and to just be quiet and still,” says Kerri.

It was at that time Laree, Paulette and Joe knew they were on the right path to bring a sculpture to the Phoenix campus.

They hugged and said their goodbyes. Kerri went off to her appointments. The Maslicks, Laree and Dan went off to bring a sculpture to Arizona.

Inspiring ArtworkThe friends commissioned world-renowned sculptor Glenna Goodacre to create the statue. She specializes in capturing historical figures displayed in community settings. Her most well-known works include the Vietnam Women’s Memorial installed in Washington, D.C., and After the Ride, a 7 1/2-foot standing figure of President Ronald Reagan in the National Cowboy and Western Heritage Museum in Oklahoma City and in the Reagan Library in Simi Valley, California.

The benefactors relied on Glenna’s expertise to design the sculpture based on the feelings they wanted it to convey. “Kerri became our poster child for the statue, and we let Dan and Glenna do their magic,” says Paulette.

The Making of the ‘Ancestors’The sculpture team spent several months researching the Doctors Mayo and perusing archival photos and materials. They studied not only the physical features of each figure but also the Mayo family’s personalities, quotes and life experiences.

When the friends first saw the miniature concept of the statue, they couldn’t help but think of Kerri.

“Glenna captured Mayo’s history and the feeling that no one is alone — that you have the Mayo brothers and their father looking out for you saying … We got you,” says Paulette.

The only statue ever created of the father and sons together, the 9-foot-tall Ancestors statue greets guests on the Phoenix campus. It features William Worrall Mayo, M.D., and his sons, William James Mayo, M.D., and Charles Horace Mayo, M.D., who each represent a key component of how Mayo Clinic achieves its mission to inspire hope and contribute to health and well-being by providing the best care to every patient through integrated clinical practice, education and research. Father Mayo faces north toward Rochester, and Dr. Charlie’s hand is extended to invite all to put their hand in his as they enter Mayo Clinic.

The Right Place, the Right TimeAlthough the friends have not been able to get together since their meeting in 2014, they stay in contact and are planning to visit Arizona in 2017. “I’m so blessed to have friends like them in my corner,” says Kerri.

Today Kerri is cancer-free, she can walk without a brace, and the function in her foot has returned.

“Kerri came to us at the exact time we needed her, and we came to her at the exact time she needed us,” says Laree. n


Paulette and Joe Maslick became seasonal residents of Arizona in 1997 to be closer to Paulette’s parents. Already familiar with Mayo Clinic from their hometown in Chicago, they became involved with Mayo Clinic’s Phoenix campus through their community’s fundraising organization that has raised more than $5 million for cancer research. Paulette also serves on the board of directors at Help in Healing Home for Mayo Clinic transplant patients.

Paulette and Joe met when he was a 20-year-old DePaul University student, and she was 16. Both were working in the Accounting Department of Griffith Foods, which began as an agriculture laboratory to bring science into the food industry. Paulette’s father was the head of maintenance and had arranged for her to work there after school.

Paulette and Joe grew up on the south side of Chicago. Self-proclaimed American dream kids, neither of their parents had finished high school; yet, they were determined to go to college and make their parents proud.

The son of a carpenter, Joe continued to work part time at Griffith Foods while attending college. Paulette’s family also insisted their children work. She continued to work at the laboratory weekends and summers while attending college at Northern Illinois University, where she obtained her degree in special education, and graduate school at Loyola University in Chicago, where she completed her master’s in educational administration. She eventually switched careers to finance and retired after 20 years at a national brokerage firm.

Joe still works for Griffith Foods, 46 years later.

“We started out with a really humble beginning, and from that, we’ve been moderately successful in regards to being able to move up in our life,” says Joe. “We just believe that it’s been a road that we really should share.”

Born and raised on a ranch in New Mexico, Laree Perez grew up north of the city of Roswell, New Mexico. She and her cousins were expected to work every day with early mornings and late nights working cattle and sheep and caring for the pigs, chickens and horses. “It was wonderful and fun. We never complained or asked questions. We were working kids,” she says.

In 1939, Laree’s father, Ramon Perez Jr., broke his leg while working on the ranch. He was only eight years old. Ramon’s leg required further surgery that wasn’t available in Albuquerque, New Mexico. Laree’s grandparents, who only spoke Spanish, boarded the train for a two-day ride to Mayo Clinic with Ramon as their interpreter. Her family still tells the story of how Mayo saved her dad’s leg.

“Ironically, history would show that about every 10 years — 1939, 1949, 1959 — someone in my family had a life-threatening illness. And in their minds, the only thing to do was go to Mayo Clinic. So that’s what they did,” Laree says.

Following in her family’s footsteps, in 1989 Laree sought out Mayo Clinic when she was sick. She eventually moved to Arizona in 2010, just to be closer to Mayo Clinic.

“I work hard, and I feel if there is anything I can do to make somebody else’s life a little easier, a little better, a little happier, then I will,” she says.

Laree quotes her fellow Baylor University alumnus, author Robert Fulghum, when thinking about her meeting with Kerri: “You may never have proof of your importance, but you are more important than you think. Every person passing through life unknowingly leaves something behind.”

The 9-foot-tall Mayo Ancestors statue featuring William W. Mayo, M.D., and his sons, William J. Mayo, M.D., and Charles H. Mayo, M.D., greets guests on the Phoenix campus. Learn more about the making of the statue by viewing Honoring Our Fathers: The Mayo Ancestors Statue in Arizona, produced by Mayo Clinic Heritage Films, at history.mayoclinic.org/

Glenna Goodacre

Daniel Anthony


Massachusetts woman gives generously following compassionate care more than 60 years ago

‘ You don’t forget people like that’

Each word struck a blow —

Lump. Cancer. Urgent.

What happened next for Constance Furcolo in a Chicago doctor’s office changed the direction of her life.

“I’m calling Mayo Clinic,” her physician said.Many people find hope and healing at Mayo. Few

draw such strength and lasting desire to help others from two experiences more than 60 years ago.

I Had an AnchorConnie first arrived at Mayo Clinic in 1954.

Dwight D. Eisenhower was in the second year of his presidency. TV’s first power couple — Lucille Ball and Desi Arnaz — starred in the top-rated show I Love Lucy. Large-scale tests of the polio vaccine began in schools. In Rochester, the Mayo Building, planned for 10 stories, was under construction.

At Mayo, Connie met James Priestley, M.D., Ph.D., who worked with his team to rule out cancer.

“At long last, I had an anchor. You don’t forget people like that,” recalls Connie, whose eyes sparkle as she describes the relief and sense of purpose that Dr. Priestley and his colleagues inspired in her. “They removed the lump and told me I’d be fine.

“You could say time proved them right.”

Grasping OpportunitiesConnie’s younger years were spent in movement. Her father worked for the Treasury Department with transfers that relocated the family so often that she attended 28 elementary and secondary schools.

Her one constant was the Metropolitan Opera in New York. Wherever Connie lived, she could pick up the Met’s radio broadcasts on Saturday afternoon.

As a teenager, she set out on her own, heading by train from Jacksonville, Florida, to Chicago.

“I loved to sing. When I reached Chicago in 1946, I was accepted at the Chicago Conservatory of Music, where I continued my vocal studies.” She also found a job at a hearing aid company as new technology was transforming the industry, and business took off.

Subsequently, she moved to New York City where she had an audition for the Met. This led to an offer to study voice at Teatro alla Scala in Milan, Italy, but she declined. “I had to work to make ends meet.”

Although she did not become an opera singer, Connie showed perfect pitch in the timing and selections of her career. While in New York, she built upon her previous experience in the hearing aid business. By her mid-20s, she was managing three branches of a New York hearing aid company. Then, she was recruited to open a hearing aid franchise in the Washington, D.C., area, followed by a move to Minneapolis as part owner of a company that designed and manufactured electronic products.


“ At long last, I had an anchor. You don’t forget people like that.” — Connie Furcolo

“You keep going. You grasp the opportunities,” she says.

But success in business affected her health.

The Wake-Up CallIn 1955, less than a year after dodging the cancer scare, Connie was back at Mayo Clinic.

“I was exhausted, working around the clock, never taking a vacation. My body just gave out. Friends drove me from Minneapolis to Rochester in the middle of the night.”

At Mayo Clinic, she says, “I saw a flock of doctors. They said, ‘Change your life or you’ll have a nervous breakdown.’”

Connie sought reassurance from the staff, then requested to see Dr. Priestley. Her care team was happy to arrange it.

He came into the room and said, “Hello, Connie. Why are you here?” and listened intently to her.

His advice after hearing Connie’s story: “Listen to what the doctors say.”

Getting the Job DoneConnie followed Mayo’s advice and changed the course of her life. She sold her business in the Twin Cities and moved out of the Midwest.

Her career continued its upward path. She served as an officer of an insurance company and vice president of a stock brokerage firm. She managed one of the largest union pension funds in the nation. While working full time, she earned a degree at Columbia University School of Business Administration. She capped her career as an executive with John Hancock Financial Services.

“Everywhere I went, I was practically the only woman. I never really thought about it. I just got the job done,” Connie says.

Yet despite this pace, she achieved the balance that Dr. Priestley and his colleagues recommended. She made time to support children who are deaf and encourage young people pursuing careers in the performing arts. She wrote articles and lectured on financial planning, while also serving on the boards of national and international financial planning associations.

Friends, books, music and travel brought enrichment. Later in life, she met a man to share them with, Foster Furcolo.

Foster had served in the U.S. House of Representatives and was the former governor of Massachusetts.


The Surgeon’s Surgeon

Connie Furcolo had a list of outcomes she expected when she consented to surgery in 1954 after meeting James Priestley, M.D., Ph.D., and his team.

She recalls Dr. Priestley listened to each requirement carefully. Then he responded politely, with a touch of humor, “Do you think you’re God?”

Connie yielded nothing. Later, lying on a gurney en route to surgery, she reminded Dr. Priestley of her list.

“Remember what I told you,” she admonished.

“Yes, God,” came the deferential reply — and a smile.

Dr. Priestley’s quick wit was just one of his extraordinary abilities. Peers called him “a surgeon’s surgeon” whose innovations included performing the world’s first total removal of the pancreas. He commanded a military hospital in the Pacific Theater of World War II and served as Mayo Clinic’s chief executive officer.

“If you had to select a single quality for which Dr. Priestley was venerated,” it was “his attitude toward patients,” according to an article in The Mayo Alumnus magazine following his death in 1979.

Dr. Priestley, who spent 35 years on staff at Mayo Clinic, trained generations of physicians with the adage: “If the surgeon is not careful, the patient may be referred to as ‘the common bile duct stricture in bed six’ rather than ‘Mrs. Thompson, the mother of four children.’”

In 1965, Mayo Clinic staff and alumni surgeons established the Priestley Society. It promotes Dr. Priestley’s ideals in the art and science of surgery.

What Connie remembers most is the doctor’s compassion toward her.

“When I woke up in my hospital room, Dr. Priestley and a retinue of doctors and nurses were there,” she recalls. “He said the operation went well, but he was concerned about the dressing. He told the staff that, since I had red hair, it was likely I’d have delicate skin that was more sensitive to pain, so they should use a surgical tape that wouldn’t hurt.

“It meant so much to me that the people at Mayo Clinic would go to that level of thoughtfulness. It makes me want to help Mayo so they can provide that kind of care to others.”

James Priestley, M.D., Ph.D.

“We loved and respected each other,” Connie says, describing the bond they shared from their marriage in 1980 through his death in 1995. “We had plenty to talk about.”

A Moment in TimeNow retired, Connie continues her love of learning. She remains active by managing investment portfolios for half-a-dozen friends.

Connie combines her financial expertise with a passion to support Mayo Clinic. In addition to providing annual support, she named Mayo as a beneficiary of her charitable trust. This type of gift

allows the benefactor to retain control of assets during his or her lifetime, ultimately transferring them to advance Mayo’s humanitarian mission.

Connie has not visited Mayo Clinic since 1955, but Mayo remains a priority. She enjoys reading about Mayo’s initiatives in patient care, research and education. When asked what Mayo Clinic means to her, she circles back to the skill and compassion of Dr. Priestley, who provided encouragement and a sense of direction when she needed it most.

“I’ve met a lot of doctors in my life,” she says, “but never one like him.” n


Genetic Sleuths Never Give Up Hunting to Identify Minnesota Boy’s Condition

Caring for Karter

Karter Malcomson coos and swivels his head when he hears his name in his mother’s reassuring voice.

“You know we’re talking about you, don’t you?” Karter’s mom, Kerrie, says. “Karter is a very happy boy. He’s very content. He’s very interested in everything, especially people. He’s definitely a people person.”

His father, Zane, spins Karter upside down on his lap and smiles ensue.

“Kerrie always says how much Karter loves me,” Zane says. “I notice it when I come home from work and he reaches out to me and wants me to hold him. We have a great bond.”

Karter just turned 2 but is delayed in growth and cognitive abilities. He also has a surgically made hole in the front of his neck into his windpipe to aid in breathing.

“He’s obviously very small, the size of a 6- or 8-month-old, and he doesn’t walk. He doesn’t do any of that normal 2-year-old stuff,” Kerrie says.


Preparing for KarterKerrie and Zane knew before Karter was born at Mayo Clinic in Rochester, Minnesota, he would have health concerns. Karter had stopped growing in the womb and was growing extra fingers, a sign of a genetic disorder. He spent three months in the newborn intensive care unit.

As Karter began his life, his parents worried.“Before his diagnosis, the wondering was the

worst — when you just don’t know. You’re like,

‘How do I help my child? I don’t know what I’m doing. I don’t even know what he has,’” Kerrie says.

But Karter’s symptoms didn’t place him in any well-defined rare disease category. Even at an institution that sees more than 1.3 million people each year across a wide spectrum of complex conditions, his doctors realized that there was something different about Karter’s rare genetic disorder.

Zane, Karter and Kerrie waited for Karter’s test results while Mayo Clinic’s functional genomics team investigated. The team worked to verify variants in Karter’s C2CD3 gene that were driving his disease, which physicians ultimately diagnosed as oral-facial-digital syndrome, type 14.


The Mayo Clinic Department of Clinical Genomics consults with physicians who treat patients like Karter, whose case was handled by clinical geneticist Pavel N. Pichurin, M.D. Dr. Pichurin and his colleagues try to determine the genetic disorder and provide patients with a diagnosis through review of scientific literature and tests.

But what if, after all testing is complete, the symptoms that a person has don’t match up with the results, or the results are inconclusive? What happens if there is no answer? What happens to cases like Karter’s?

Genetic Quest for AnswersCharu Kaiwar, M.D., Ph.D., dreads getting the question at social events: “What do you do for a living?”

“It’s not an easy answer. It would probably be an essay,” she says.

That’s because Dr. Kaiwar, a research fellow, is part of a group that reviews the cases of people who have exceedingly rare or undiagnosed disorders like Karter’s.

Dr. Kaiwar is one of the members of the functional genomics team at Mayo Clinic’s Center for Individualized Medicine. The group includes a team of experts in lab science, data crunching and genetics who are all working together to find genomic-based answers to some of the most puzzling patient questions.

This often means sifting through the literature of thousands of cases and information on thousands of genetic variants in a person’s body that may — or most likely may not — be significant.

“It’s so complicated. But there’s so much potential here for the future.” — Charu Kaiwar, M.D., Ph.D.

A Recipe for Understanding Genetic Function

Genetics continues to be at the forefront of research, patient diagnosis and treatment. But how do each person’s genes and genetic variants factor in his or her care?

Consider the example Nicole J. Boczek, Ph.D., uses when she discusses the role of genetics:

“There are trillions of cells in someone’s body, and all of them have a copy of a ‘recipe book’ (your DNA). That recipe book helps each cell make all the different recipes to help us live our lives every single day, making each cell function, helping our hearts beat, making our digestive system work properly, and so on.

“There are typos in every person’s recipe book. A lot of times, these typos are small, maybe a word is spelled wrong, but it doesn’t change the content. Your body can still read and understand the recipe and everything is fine. But if there’s a typo at a key point, such as changing the baking temperature from 350 degrees Fahrenheit to 550 degrees Fahrenheit, this can completely change the end product and may cause a significant problem.

“So our goal is to try and find all of the typos in each recipe — or gene — and see which ones are actually important and make significant changes to the recipe to establish if there’s going to be a problem.”


“It’s so complicated,” Dr. Kaiwar says. “But there’s so much potential here for the future.”

That quest for an answer by the staff and patients, who typically have bounced around from different specialists in other health care organizations, can become an all-consuming pursuit.

“We are usually the last resort. We could spend hours or months on it,” says research fellow Filippo Pinto e Vairo, Ph.D. “If we are not doing this, it’s almost impossible that the physician or genetic counselor can spend the time to do it.

“That’s what motivates us. We are a team that works together with different backgrounds. We know we can share experiences and learn from each other and provide something to patients.”

The team, which is reviewing about 50 cases at any given time, solves approximately 30 percent of them. And the percentage is rising.

“Many patients with an unknown genetic disorder will have spent years managing their health problems while also trying to determine what the disease actually is,” says Margot A. Cousin, Ph.D., a health sciences research fellow. “To be done hunting for the answer, it provides a lot of comfort. These patients and families are finally able to move on from the constant wonder about the cause of their disease and focus on what they might now be able to predict.”

Karter’s CareNicole J. Boczek, Ph.D., was one of the leaders of Karter’s care behind the scenes for the functional genomics team. She never met the happy-go-lucky boy, but spent months working on his case.

“Karter’s testing came back with two interesting variants, both of them within the same gene: C2CD3,” says Dr. Boczek, a molecular geneticist.

“Only one paper had ever been published regarding this gene related to disease. It overlapped pretty well with Karter’s symptoms. But we had to take these findings to the next level and prove these variants of uncertain significance were related to Karter’s symptoms.”

Kerrie says finding an answer to Karter’s condition has brought her peace, while Zane said he believes the information will help them in the future.

Karter’s mom, Kerrie, keeps

him close. “He’s very personable,”

she says. “He’s everybody’s best

friend.”


To do that, Dr. Boczek and the team did additional laboratory testing to show that these genetic variants were affecting protein development and driving Karter’s disease.

Through the team’s work, they homed in on a diagnosis — oral-facial-digital syndrome. Oral-facial-digital syndrome has at least 13 types, according to the U.S. National Library of Medicine. Karter’s case didn’t fit in the other 13 categories and was diagnosed as type 14.

“There are nine individuals reported ever in the literature with this condition stemming from this gene,” says Dr. Boczek. “Since we’ve worked on Karter’s case, we now are contributing to the literature with four more cases. It is really rare, but it is inspiring.”

The Journey AheadKerrie says finding an answer to Karter’s condition has brought her peace, while Zane said he believes the information will help them in the future.

“There’s so much potential. His doctors can only guess at what he’ll be able to do, and he continues to surprise us every day,” Zane says. “It gives us hope for the future.”

Karter’s breathing, sleep and vision issues are managed by a comprehensive treatment plan. He also works with a physical therapist weekly. Kerrie raves about the compassionate care Karter and her family have received each step along the way.

“I really have grown to love the care team he has now,” Kerrie says. “I don’t have to worry.”

And Karter, who listens intently and claps intermittently to a musical toy in his living room, has proven the ability to exceed any preconceived expectations.

Kerrie and Zane hope one day Karter will be able to meet milestones such as crawling, changing positions and maybe walking. But for now, they’re happy that he’s happy.

“Karter is a happy boy, not someone with health issues,” Kerrie says. “He’s very personable. He’s everybody’s best friend.” n

Eric W. Klee, Ph.D.

The Beginning of a Team

In the late 1990s before he earned a doctoral degree, Eric W. Klee, Ph.D., became hooked on an emerging field of science.

Dr. Klee, from a family of medical doctors, still wasn’t sure whether to pursue an M.D. when mentor Franklyn G. Prendergast, M.D., Ph.D., told him that the future of medicine would be in a developing field of study.

“I like computers. I like technology, but I also liked medicine,” Dr. Klee says. “And Dr. Prendergast said, ‘There’s a field in science called bioinformatics. It doesn’t really exist yet, and it won’t exist for a few years, but when it does, it’s going to be important for decades.’”

Dr. Klee took the leap of faith that the numbers would work out in his favor, graduating with a Ph.D. in health informatics/bioinformatics. He joined Mayo Clinic in 2005 as one of the first employees hired with a degree based in the emerging field that applies large amounts of health data into individualized tests and treatment plans for patients.

In 2012, Mayo Clinic created the Bioinformatics Program under the direction of the Center for Individualized Medicine. The center also launched the Individualizing Medicine Conference to provide a space for collaboration aimed at better incorporating genomic information into patient care.

At the conference Dr. Klee sought out then-center director Gianrico Farrugia, M.D., and associate administrator Scott A. Beck to propose the idea of a team that could dig deep into the functional science of genetic changes on behalf of patients with undiagnosed genetic disorders. Benefactors helped the concept gain seed funding, and the functional genomics team blossomed.


Chicago Benefactor Sees Mayo’s Commitment to Patients, Promise of Individualized Medicine

Muneer Satter’s first interest in medicine wasn’t rooted in genomics. It was in seeing the health care needs of his loved ones and of the world’s most vulnerable. In his professional life, before making investments in biotech, he sought out the opinions of expert doctors at Mayo Clinic.

“The more I talked to doctors, the more I started gravitating there,” the Chicago investor says. “That’s when I realized biotech was going to be a big deal.”

The Satter Foundation is a Principal Benefactor to Mayo Clinic’s mission, supporting the Center for Individualized Medicine’s efforts to discover, translate and apply genomic medicine services and products to each patient.

In-Depth, Yet AccessibleThe foundation’s support helped the center launch the Individualizing Medicine Conference, which brings together a who’s who of leaders in genomic sciences each fall.

In October 2016, more than 1,300 attendees representing health providers, industry and the public came to Rochester, Minnesota, to explore ways to accelerate the advances in genomic medicine into everyday practice.

In its first five years, the conference has drawn an international audience and well-known presenters in the field, including leaders from the National Institutes of Health, the American Society of Clinical Oncology and direct-to-consumer companies such as Helix, 23andMe and Human Longevity.

The past two years, Cathy Wurzer, the host of Minnesota Public Radio’s “Morning Edition,” has hosted the event.

“I’m amazed by the brainpower in the room both in terms of speakers and attendees,” Cathy says. “It is clear to me that Mayo, because of its reputation, can bring in top-notch genomics researchers and other innovators in the field in order to have in-depth, yet accessible conversations.”

Prosperous and HealthyFor Muneer, the commitment to health and education is part of the Satter Foundation’s commitment to better the world for all its citizens. He and his wife, Kristen Hertel, formed the foundation in 1997 with the vision of a world where all people — no matter where or in what circumstances they are born — have the resources and opportunities to live a free, educated, prosperous and healthy life.

But the Satter family’s first interactions with Mayo Clinic came due to an illness where the family saw firsthand the Mayo Clinic Model of Care at work.

“Mayo is deeply committed to people,” says Muneer. “Every time I’ve been there, the service level has been amazing. It’s very, very different from most hospitals. It’s really an exceptional experience — a personal experience. Things run on time; things get done correctly. Mayo Clinic works as a team; they talk to each other.

“But, most of all, people care. You feel the caring and compassion for people who are really sick from the moment you come in. It’s a special place.” n

Genes Made Personal


“ Mayo is deeply committed to people. Every time I’ve been there, the service level has been amazing. It’s very, very different from most hospitals. It’s really an exceptional experience — a personal experience. Things run on time; things get done correctly. Mayo Clinic works as a team; they talk to each other.”

— Muneer Satter

Cathy Wurzer

Richard Weinshilboum, M.D.

Stephen H. Friend, M.D., Ph.D.

UNTANGLING ALZHEIMER’S

Hope remains in the �ght against Alzheimer’s

disease despite disappointing trial results.

Ronald C. Petersen, M.D., Ph.D., shares how Mayo Clinic

is leading the way with expertise that is now in greater

demand among the research community.


amilies living with Alzheimer’s disease woke to devastating newspaper headlines recently: Another highly touted drug failed in clinical trials.

Drugmaker Eli Lilly’s EXPEDITION3 trial tested an antibody, a molecule used by the immune system to fight off disease, called solanezumab. This experimental drug sought to remove harmful proteins in the brain that become building blocks for amyloid, a molecular hallmark of Alzheimer’s disease. Like a garden mildew that deprives a leaf of key nutrients, amyloid proteins form into sticky clumps of plaque that kill brain cells, preventing the formation of new memories.

Not faulting the drugmaker for its efforts, media reports of the trial results nevertheless expressed varying degrees of desperation, revealing the high-stakes nature of finding a true cure for Alzheimer’s disease. Without an effective intervention, the number of Americans age 65 and older living with Alzheimer’s is estimated to nearly triple, from 5.2 million today to 13.8 million in 2050, according to the Alzheimer’s Association. Meanwhile, U.S. health care costs related to the disease are expected to increase by 360 percent to more than $1 trillion, putting Medicare, Medicaid and the global economy in a vice grip.

Despite the setbacks and statistics, one person maintaining his optimism is Mayo neurologist Ronald C. Petersen, M.D., Ph.D. In addition to directing the Mayo Clinic Alzheimer’s Disease Research Center, Dr. Petersen has been appointed to numerous national and international advisory boards charged with finding an answer to what he calls the defining disorder of our generation.

With that insider perspective, Dr. Petersen has a clear message for patients and families who read the latest Alzheimer’s news with trepidation: Don’t give up hope.

Knowing More, Trying More“We know so much more about the biology of the disease than we formerly did — that is, we know about amyloid protein, how it’s deposited, where it is, and now, to a large extent, how to get rid of it,” Dr. Petersen says.

He notes that several clinical trials planned or underway take different approaches to targeting the root causes of Alzheimer’s disease. Like the Eli Lilly trial, some clinical trials involve antibodies that attack amyloid protein at different points in its development. Other trials investigate enzyme inhibitors that prevent the amyloid development process altogether.

While amyloid has received the most attention from biotech companies, Dr. Petersen acknowledges that the recent string of drug failures may result in more treatments that target a protein called tau. If amyloid is a garden mildew caked onto a plant’s leaves, tau is an invasive weed that forms tangles in the brain and blocks necessary nutrients from getting to brain cells. The affected areas are generally critical to memory development.

Exploring new ideas is a good thing, according to Dr. Petersen. He says that the research community will benefit from diversifying its treatment strategies to address the complexity of Alzheimer’s disease.

“Alzheimer’s is not a single cell that has failed and could be replaced and cured with stem cells,” Dr. Petersen says. “Alzheimer’s is a system failure in the brain.”


But there’s another question, one that’s vitally important for a disease that doesn’t usually strike until after age 65: How can research predict if and when that system will fail?

“A big criticism is that we’re starting too late in the disease process,” Dr. Petersen says. In many clinical trials, patients already must have documented presence of amyloid in the brain and clinical symptoms of Alzheimer’s disease to meet enrollment criteria. At that point, the damage in the brain may be irreversible, rendering promising therapies useless.

“We know so much more about the biology of the disease than we formerly did — that is, we know about amyloid protein, how it’s deposited, where it is, and now, to a large extent, how to get rid of it.”

— Ronald C. Petersen, M.D., Ph.D.

Ronald C. Petersen, M.D., Ph.D., is the Chester and Debbie Cadieux Director of Mayo Clinic Alzheimer’s Disease Research Center and the director of the Mayo Clinic Study of Aging. He is recognized as a Mayo Clinic Distinguished Investigator and holds the Cora Kanow Professorship in Alzheimer’s Disease Research.


“It’s as if we’re lowering your cholesterol as you’re having a heart attack, not 10 to 15 years earlier,” Dr. Petersen says. “Because of the possibility that some of these drugs actually work but are being used too late in the disease process, the field is looking toward earlier and earlier intervention.”

Expertise in DemandAs pressure mounts to find the optimal treatment window for Alzheimer’s disease, scientists are turning to Mayo Clinic for expertise that is now in high demand: Mayo’s unmatched research capabilities in prediction and prevention.

To design more effective clinical trials and recruit the right patients, scientists need risk models that predict who will develop Alzheimer’s disease and at what point in their life span. These risk models require imaging and biological data on large populations of people as they age over time.

Because of a unique medical records linkage system in Olmsted County, Minnesota, Mayo Clinic can conduct this population-level research through the Mayo Clinic Study of Aging. The study recruits a random sample of local study volunteers from 30 to 90 years old to better understand amyloid, tau and other dementia-related biomarkers long before an individual becomes symptomatic.

Information from the Mayo Clinic Study of Aging that is becoming more valuable to the research community includes population data on individuals who are just barely below certain biomarker-positive thresholds — for example, patients who today would test negative for amyloid but eventually become amyloid positive in a defined time frame.

“This is where a lot of Mayo’s research comes into play: Where in the life span do things start to go wrong? We can then relay this information to the therapeutic community. Given this person with this background, you need to intervene at age 50, 55 or 60.”

A Silver LiningCoupling the progress in new therapies with growingmomentum behind early intervention, Dr. Petersen sees a silver lining in the solanezumab trial.

“Consider that the solanezumab trial enrolled people who had documented amyloid in the brain. That was one of the first studies to do that,” Dr. Petersen says. “Thanks to advances in biomarker development, going forward, almost all studies will ask patients, ‘Do you have the target that the drug is shooting at?’ If yes, then the question will become, ‘When should we intervene?’ Already, trials are moving earlier and earlier.”

As clinical trials become more sophisticated, definitive cures for Alzheimer’s disease will come into view, Dr. Petersen believes.

“For instance, if research showed antibodies really work, we’d develop a vaccine against Alzheimer’s disease. That way, patients don’t need invasive and expensive infusions for the rest of their life starting at age 45 or so,” Dr. Petersen says. “With a vaccine, the body develops its own antibodies — just like it does with the polio vaccine.”

With no shortage of imagination or perseverance, the research community will push forward, Dr. Petersen concludes. And the day will come when newspapers hail a different headline: a long-awaited turning point in the journey to end Alzheimer’s. n


Translational Science Superstars

Ronald C. Petersen, M.D., Ph.D., is quick to point out he’s no lone track star when it comes to achieving Mayo Clinic’s leading reputation in Alzheimer’s disease research.If anything, Mayo’s physicians and scientists who study Alzheimer’s and dementia function like an all-star relay team. With each lap around the track, experts in neuropathology, basic science, genetics, neuroimaging and population science pass discoveries seamlessly to one another so each can apply the rigor of their specialty

to advance potential breakthroughs across the ultimate finish line: patient application.

This is called translational science, and it makes much of Dr. Petersen’s work in population science possible. For instance, studying amyloid and tau in Mayo Clinic Study of Aging participants has required significant advances in neuroimaging so researchers can see the progression of these proteins over time in living people as they age. Those advances in neuroimaging are built off

the work of basic scientists who reveal the true nature of disease culprits like amyloid, tau and genetic factors. And finally, pathologists who examine postmortem brain tissues find the initial genetic or biomarker anomalies that kick the entire team into action.

“People always talk about translational research — taking basic science findings from the laboratory and applying them in the clinic to patients,” Dr. Petersen says. “This is really what Mayo is built to do.”

Left to Right: Walter A. Rocca, M.D., Michelle

M. Mielke, Ph.D., Clifford R. Jack, M.D., Ronald C.

Petersen, M.D., Ph.D., David S. Knopman, M.D.,

Rosebud O. Roberts, M.B., Ch.B., Bradley F. Boeve,

M.D., Val Lowe, M.D.


Stories of Hope“As we reflect on the first year of operations, we are energized by the milestones

and successes made possible through philanthropy,” says Robert L. Foote, M.D.,

chair of the Department of Radiation Oncology. These milestones include treating

715 patients since opening the Phoenix Proton Beam Therapy Program in March

2016 and the Rochester program in June 2015.

Proton beam therapy is an ideal treatment option for many types of rare and difficult-to-treat cancers as well as pediatric cancers. Because children’s organs are still developing, they are more susceptible to the long-term effects of traditional radiation.

Proton beam therapy is more finely controlled, so higher doses of radiation can be safely delivered to tumors with less risk to healthy tissue. Proton beam therapy is building stories of hope.

JOHN’S STORY Cancer Treatment Technology Sparks Science Interest John Sanders attends high school, holds two part-time jobs and exhibits a keen interest in science and engineering. Two years ago, he began to have vision problems in his left eye that couldn’t be corrected. Further testing revealed he had a tumor behind his eye. While surgery removed most of the tumor, the tumor began to grow back over the span of a year.

John’s family was overjoyed to hear that Mayo Clinic had recently opened proton beam therapy and they wouldn’t have to travel for his treatment. With the residual tumor now growing, John underwent 5 1/2 weeks of proton beam therapy.

With each treatment, John became more eager to learn about the science and engineering behind how radiation therapy works. His treatments coincided with the time he was required to do an internship for his school’s CREST (Center for Research, Engineering, Science and Technology) honors program. So, Thomas B. Daniels, M.D., a radiation

oncologist at Mayo Clinic, helped arrange a job shadowing experience for John while he was going through treatment. John’s interest in science and engineering — combined with his personal interest in his treatment — made this opportunity a great fit.

Justin D. Gagneur, a physicist in Mayo’s Department of Radiation Oncology, showed John the ropes around the clinic, talked to him about the tools and math used to design the tailored treatment he was receiving, and shared how John’s interest in science and engineering could translate to jobs in the medical field. John has “a scientifically questioning attitude,” Gagneur says, and “was thoughtful, attentive and upbeat” throughout his shadowing experience.

On John’s last day of treatment, he was told he was a celebrity of sorts. John was the milestone 100th patient to complete proton beam therapy at Mayo Clinic in Arizona. He was surprised and honored.


“ I hope more

people can

have a good

experience

and be able

to have

this kind of

treatment, if

they need it.”

— John Sanders

“I kind of look at this as a bookmark in my life,

and I’m excited for what I can accomplish as

an advocate for childhood cancers, a soccer

player and a runner.” — Miranda Mead

MIRANDA’S STORY Cancer Survivor’s Drive Extends Far Beyond the Wheel On Miranda Mead’s 16th birthday she failed her driving test.

Although she had been looking forward to getting her license for a long time, Miranda couldn’t sit without being in pain, and the sporadic numbness in her leg made it worse.

In the spring of her freshman year, Miranda suffered a hard fall on her tailbone. By autumn, although still in pain, she ran on her high school’s cross-country team in Wayzata, Minnesota. By the end of the season, the excruciating pain in her back forced Miranda to stop running. Two days after her birthday, when the periodic numbness in her left leg and foot evolved into a complete loss of feeling, she knew it was something more.

An MRI revealed the 16-year-old had a 6-inch, inoperable tumor at the base of her spine. Miranda’s biopsy confirmed the diagnosis of Ewing’s sarcoma, a rare type of bone cancer.

Miranda had concurrent sessions of chemotherapy at Children’s Hospitals and Clinics of Minnesota and proton beam therapy at Mayo Clinic. Miranda grew to appreciate the Mayo employees who saw her daily as she completed treatments. “I have a real soft spot for the proton beam staff,” says Miranda. After her experience, she hopes to help others by pursuing a career in radiation oncology.

Miranda says she used many of the same strategies she would use in a race to approach her treatment, while her parents marveled at her positive attitude through it all.

Miranda completed her last proton beam treatment in late February 2016. She is happy to be resuming her normal activities, which now include driving. “I had been in pain for seven months, and in just five days after my chemo treatment, I had no pain,” she recalls. Pain-free and cancer-free, Miranda’s been able to accomplish a goal that’s shared by every 16-year-old.

“I can happily say that through all this, I still got my license,” Miranda says, grinning.

Miranda and her family decided to use the attention they’ve been receiving to raise awareness and money to support cancer research. Miranda is committed to being a voice for all children fighting cancer and has been very active in advocacy efforts. n

715PATIENTS TREATED

WERECHILDREN

1in6

Ages 5 months to 90 years

Patients ranged in age from 90 years to

5 months

Patients ranged in age from 90 years

to 5 months


Musician Thanks Mayo Clinic Through ‘Dr. Tango’ Performance

Sweet Sounds

Lewis Lipnick thought his music playing days were over. The principal contrabassoonist for the National Symphony Orchestra at the John F. Kennedy Center for the Performing Arts had become blind in his right eye and had developed a condition in his left eye that was threatening to end his career. With his music-playing days at stake, he was unable to find a surgeon willing to operate.

So the professional musician came to Mayo Clinic’s Rochester, Minnesota, campus at the recommendation of his friend and music director, Christoph Eschenbach.

Lewis says he was “directed to a very fine young surgeon” who was willing to help. The surgeon performed the corrective eye surgery “beautifully” and without complication.

“From then on, I’ve trusted Mayo Clinic with all of my health care,” Lewis says.

Inspiration struck Lewis on a recent return to Mayo Clinic. He decided he wanted to do something to show his gratitude for everything his care teams at Mayo had done for him by staging a concert.

“When I asked some of our Mayo staff musicians if they’d be interested, they were unanimously enthusiastic,” says Johanna S. Rian, Ph.D., program director of the Dolores Jean Lavins Center for Humanities in Medicine. So, too, was the public. More than 300 people turned out for the concert and gave the performance a standing ovation at the night’s conclusion.

The center supports Mayo Clinic’s mission by integrating the arts and other expressions of human culture into the healing environment, which includes music, visual art, dance, theater, creative writing and more for patients, families, staff and the public.

Musicians for the December 2016 event included Rohin A. Aggarwal (euphonium), Allen T. Bishop, M.D. (oboe), J. Michael Bostwick, M.D. (clarinet), Christopher J. Jankowski, M.D. (trumpet), Grace Y. Kim (violin), Matthew R. Schuelke (French horn), Tiffany M. Strande (violin) and Mimi C. Tung (piano).

Presented by the Lavins Center for Humanities in Medicine, the concert included musical selections by composers such as Baldwin, Beethoven and Mozart, as well as the world premiere of a piece of music commissioned specifically for the concert called Dr. Tango by Noelia Escalzo, a composer from Argentina.

“We knew this would be a very special concert, but we weren’t prepared for the breathtaking beauty of Noelia’s compositions and the superb musicianship of the entire ensemble,” Dr. Rian says. “We expected Lewis to be brilliant, but it was such a delight to see our staff and student musicians, and all members of the ensemble, meet his level of professionalism. This, with the fact that the concert was dedicated to Mayo Clinic in gratitude for Lewis’ care, made it very moving.” n

62 mayoclinic.org/give Volume 31, Issue 1 2017 63

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MC2386-3101

2017 Mayo Clinic Board of Trustees

EXTERNAL TRUSTEES

Linda G. AlvaradoPresident and CEO Alvarado Construction, Inc. Denver, Colo.

Bradbury H. (Brad) AndersonRetired CEO and Vice Chairman Best Buy Co., Inc. Richfield, Minn.

Ursula M. BurnsChair and CEO EmeritusXerox CorporationNorwalk, Conn.

Mary Sue Coleman, Ph.D.President EmeritaUniversity of MichiganAnn Arbor, Mich.

Richard K. DavisChairman and CEOU.S. BancorpMinneapolis, Minn.

Samuel A. Di Piazza Jr.Retired Global CEOPricewaterhouseCoopers International New York, N.Y.

William W. (Bill) GeorgeSenior Fellow Harvard Business School Cambridge, Mass.

George C. HalvorsonRetired Chairman and CEOKaiser PermanenteOakland, Calif.

Roy A. Herberger Jr., Ph.D.President Emeritus Thunderbird School of Global Management Phoenix, Ariz.

Alan R. MulallyRetired President and CEO Ford Motor Company Retired President and CEO The Boeing Company Mercer Island, Wash.

Michael K. PowellPresident and CEO National Cable & Telecommunications Assn. Washington, D.C.

Cokie RobertsPolitical CommentatorABC News New York, N.Y.

Kenneth L. SalazarPartnerWilmer Hale Law FirmDenver, Colo.

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

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

Anne M. SweeneyMember Netflix Board of Directors Los Angeles, Calif.

Diana L. TaylorVice ChairSolera, Capital LLCNew York, N.Y.

Charles B. (Charlie) TommFormer President and CEO The Brumos Companies Jacksonville, Fla.

INTERNAL TRUSTEES

Daniel J. Berry, M.D.Chair, Orthopedic Surgery Mayo Clinic

Jeffrey W. BoltonVice President and CAOMayo 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

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

Bobbie S. Gostout, M.D.Vice President, Mayo Clinic Operations

Eddie L. Greene, M.D.Consultant, NephrologyMayo Clinic

Charles M. (Michel) Harper Jr., M.D.Executive Dean for Practice Mayo Clinic

Lois E. Krahn, M.D. Consultant, Psychiatry Mayo Clinic in Arizona

Paula E. Menkosky Chair, Administration Mayo Clinic in Arizona

Heidi Nelson, M.D. Chair, Department of Surgery Mayo Clinic

John H. Noseworthy, M.D.President and CEO Mayo Clinic

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

Mary Jo WilliamsonChair, Department of Practice AdministrationMayo Clinic

ADDITIONAL OFFICIALS

Kedrick D. Adkins Jr.Chief Financial OfficerChair, Department of FinanceMayo Clinic

Michael Camilleri, M.D.Executive Dean for Development Mayo Clinic

Chris W. GadeChair, Public AffairsMayo Clinic

Cheryl J. HadawayChief Development Officer Chair, Department of Development Mayo Clinic

Joshua B. Murphy, J.D.Secretary Chief Legal Officer Chair, Legal Department Mayo Clinic

EMERITUS PUBLIC TRUSTEES

Lilyan H. Affinito H. Brewster Atwater Jr. James L. Barksdale Barbara M. Barrett Thomas J. Brokaw Barbara P. Bush Richard B. Cheney Armando CodinaFrance A. Cordova, Ph.D. John H. Dasburg Senator Thomas A. DaschleMichael Dougherty A. Dano Davis Allan R. DeBoer George C. Dillon Frances D. Fergusson, Ph.D. Bert A. Getz Louis L. Gonda Hanna H. Gray, Ph.D. W. Thomas Johnson Jr. Sister June Kaiser Richard L. Knowlton Philip R. Lee, M.D. Whitney MacMillan

Joan D. Manley J. Willard Marriott Jr. Ambassador Donard F. McHenry Newton N. MinowPatricia E. Mitchell Honorable Walter F. Mondale Marilyn Carlson Nelson Luis G. NogalesRonald L. OlsonAulana Peters Hugh B. PriceLee 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.

MAYO CLINIC MAGAZINE

Managing Editor: Colin Fly Senior Editor: Carey Stanton

Contributors: Angela Bingham, Greg Brown, Matt Dacy, Matt Derechin, Hoyt Finnamore, Erin Flaherty, Jason Fortin, Fran Hedberg, Claire Larson, Lisa Newkirk, Chris O’Brien, Cory Pedersen, Chloe Piepho, Kelly Reller, Matt Russell, Sara Tiner, Brett Vermilyea

Photography: Dan Hubert, Joseph M. Kane, Matthew C. Meyer, John Lemanski, Jodi O’Shaughnessy Olson, Pete Pallagi, Tim M. Rowans, Eric M. Sheahan, Andy D. Shilts, Gosha Weivoda

Design: Mayo Clinic Division of Creative Media

Please address comments to: Colin Fly Mayo Clinic Magazine Siebens 9200 First Street SW Rochester, MN 55905 (507) 284-8540 [email protected] www.mayoclinic.org/developmentMayo is a not-for-profit 501(c)(3) charitable organization, and contributions are tax-deductible to the extent allowed by law.


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