Barrow magazine Volume 25, Issue 2, 2013

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A magazine for the friends of Barrow Neurological Institute of St. Joseph’s Hospital and Medical Center

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Vol. 25, Iss. 2, 2013

barrow True grit

Young man karate-kicks, skateboards his way back from life-threatening brain disorder

Grand opening

The Gregory W. Fulton ALS and Neuromuscular Disorders Center offers patients and families hope

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Opening thoughts Chances are that if you’re reading this, you are happier, healthier and perhaps even better looking than the average Joe or Jane.

An article published in November in the Wall Street Journal—“Handsome Is as Handsome Gives,” by Arthur C. Brooks—makes a strong case for the many benefits of giving. “Giving generously to the causes we value really does boost our well-being and our esteem in the eyes of others,” Brooks writes.

Brooks cites research backing up this claim: One study found that charitable givers are 43% likelier than nongivers to say they are very happy; another, that happiness stimulates a part of the brain associated with pleasure and reward; and yet another, that giving makes a person more attractive in the eyes of others.

Nearly 3,000 people made a gift to Barrow Neurological Foundation or St. Joseph’s Foundation this year. As one of them, you undoubtedly can attest to the many benefits of giving. From our vantage point, philanthropy has an enormous impact on Barrow Neurological Institute.

As you read this issue of Barrow, you’ll see many examples of the programs, services and facility improvements our benefactors make possible. While these stories are wonderful examples of philanthropy in action, there are many other equally valuable stories not told here, perhaps your own. Every gift we receive—whether $5 or $5,000—is important to our mission of healing. And that is why, during this Christmas season, we count each of our benefactors as one of our many blessings.

Wishing you and yours a happy, healthy and blessed New Year!

Sincerely,

Robert F. F Spetzler, r MD r, Director, Barrow Neurological Institute

Brian R. Mortenson President and CEO Barrow Neurological Foundation

P.S. Please consider making a year-end gift to Barrow Neurological Foundation by using the enclosed giving envelope. We are grateful for your ongoing support.

On our cover: An accident that sent Ian Yates to the emergency room turned out to be a lucky break when doctors discovered a cavernous malformation in his brain. Read his amazing story on page 15.

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Contents

New hope for ALS patients: The Gregory W. Fulton ALS and Neuromuscular Disorders Center opens at Barrow, offering a full spectrum of services

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Brain tumor research: Barrow scientists go into high gear to defeat one of humankind’s deadliest cancers

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Moyamoya disease: Barrow a leader in treating rare disease that shows up as a “puff of smoke” on brain scans

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Girls’ day out: Craniofacial center treats patients to salon day and lunch

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Amazing medicine: Stories from the files of Barrow Neurological Institute

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MRI-guided laser surgery: New procedure gives young men seizure-free futures

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A second chance: Downward spiral leads to a new purpose for Payson teen

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Why I give: Sy Syms Foundation’s gift honors family’s loved one and the specialist who cared for him

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Nurse exchange program brings nurses to Barrow from around the world

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Benefactor briefs/News

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Arizona’s newest millionaire

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Year-end giving

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A magazine for the friends of Barrow Neurological Institute of St. Joseph’s Hospital and Medical Center

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Vol. 25, Issue 2, 2013

barrow

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How to Reach Us | Barrow is published twice a year. We welcome your comments, suggestions and requests to be added to or deleted from our mailing list. Call 602-406-1041, email Catherine.Menor@DignityHealth.org or mail to Barrow, Office of Philanthropy, St. Joseph’s Hospital and Medical Center, 350 W. Thomas Rd., Phoenix, AZ, 85013. Please include your name, address, email address and phone number in all correspondence. Visit us online at SupportBarrow.org.

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Editor: Catherine Menor Catherine.Menor@DignityHealth.org

Photography: Brad Armstrong, Gary Armstrong, Mark Skalney

Art director/designer: Justin Detwiler

Robert F. Spetzler, MD Director Barrow Neurological Institute®

Contributing writers: Diane Boudreau, Sally Clasen, Melissa Morrison, Sarah Padilla Printer: Panoramic Press

Brian R. Mortenson President and CEO Barrow Neurological Foundation

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by Sarah McGrain Padilla

New hope for ALS patients Gregory W. Fulton ALS and Neuromuscular Disorders Center opens at Barrow, offering a full spectrum of services ■ A diagnosis of ALS can be devastating for patients and family members, but a new center at Barrow offers hope for those affected by this and other neuromuscular disorders.

The Gregory W. Fulton ALS and Neuromuscular Disorders Center, which opened its doors in December, was made possible by gifts from Ira and Mary Lou Fulton, the University of Arizona and many other generous benefactors. Among the first of its kind in the Southwest, the center not only offers comprehensive clinical services for patients and families but is also paving the way for the future of ALS research.

The 32,000-square-foot facility, located on the St. Joseph’s Hospital campus, offers all of the services ALS patients need.

“The new center is essentially a one-stop location for patients to receive all of their ALS care,” says Shafeeq Ladha, MD, clinical director and the Ira A. and Mary Lou Fulton Chair in Motor Neuron Disease. “Before, services were fragmented, and patients might have had to go to different locations for different aspects of care. It’s hard for people with ALS to travel, so having to go to different places has a big impact on their quality of life.”

Improving quality of life for both patients and family members is what the new center is all about. Amyotrophic lateral sclerosis—also known as Lou Gehrig’s disease—is a pro-

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gressive and neurodegenerative disease in which the cells that control voluntary muscle movements die, leading to paralysis and, ultimately, death. It is only one of a number of neuromuscular disorders, such as muscular dystrophy and multiple sclerosis, treated at the center.

A one-stop center for patients In addition to housing subspecialty-trained neurologists, the center is also home to social workers, nutritionists, respiratory therapists, and physical, speech and occupational therapists. The facility features exam rooms, a therapy gym, an infusion suite, dedicated clinical research suites, a botulinum toxin lab and a neurodiagnostics lab for specialized testing.

Patients are invited to take advantage of the resource room, stocked with materials about neuromuscular diseases. Community classes on relevant topics—such as wheelchair maintenance and managing feeding tubes—will be offered by a dedicated community outreach staff.

“Learning how to take care of someone with ALS can be scary. We want to help patients and their family members feel more comfortable, which will make a big difference in their quality of care,” says Dr. Ladha.

Barrow Magazine Gregory W. Fulton ALS and Neuromuscular Disorders Center

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ALS research studies underway at Barrow Although the center just opened its doors, several research studies and clinical trials into ALS are already underway. As many as 30 trials for other neuromuscular and neuroimmunological diseases will also be offered. The following studies are currently enrolling participants.

ALS Biomarkers Barrow is one of a consortium of sites that are researching ALS biomarkers, biological markers that indicate disease and other conditions. Researchers analyze patients’ blood and cerebrospinal fluid to identify different biomarkers for the disease, allowing for the development of personalized treatment options.

Above, Robert Bowser, PhD. Lab team members include (in bottom photo): Ashley Boehringer, Yang Li, Mahlon Collins, Jiyan An, Dr. Bowser, Tina Kovalik and Nadine Bakkar, PhD.

NeuRx Diaphragm Pacing System In ALS, the diaphragm becomes weak and stops contracting, leading to respiratory failure.

This trial tests the effectiveness of an implanted device that uses an electric current to stimulate the diaphragm, potentially allowing patients to breathe on their own longer.

Tirasemtiv ALS Phase II Clinical Trial This trial is looking at tirasemtiv, a drug that may result in increased skeletal muscle force and reduced muscle fatigue.

Gregory W. Fulton ALS and Neuromuscular Disorders Center Barrow Magazine

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Comfort was also top of mind when considering the center’s aesthetics. The nature-based décor is designed to evoke a sense of peace, tranquility and hope.

The artwork and photographs, all of which were created by donors or patients with ALS, add a personal touch.

A portion of the new facility will remain as shelled space to allow for future growth. Currently, more than 120 patients with ALS—some from neighboring states—and more than 1,000 patients with other neuromuscular disorders are treated at Barrow. Dr. Ladha expects that the new center could see an increase of 50 percent or more.

Working together to find cures Scientists don’t yet know what causes ALS, and there is no cure. There is just one FDA-approved medication that slows disease progression, and it is only marginally effective. Center staff, including Robert Bowser, PhD, want to change that.

The new center integrates researchers and clinicians so that they work side by side developing new treatments for ALS and other neuromuscular disorders.

While they still conduct basic science research in a lab housed on the main hospital campus, scientists participate in and lead clinical research

studies and also have opportunities to spend time with patients and families at the center.

“When researchers get to interact with the patients and families that they’re trying to impact, it’s very motivating,” says Dr. Bowser, research director and the John and Betty VanDenburgh Chair in Neuromuscular Disease.

“At most facilities, that’s not the norm.

Clinical care and research are usually two separate silos.”

This integrative approach will allow the center to develop and test new treatments quickly. “We believe that we will be leaders in bringing new drugs to the forefront. Some of these will be tested for the first time ever on patients at our facility,” adds Dr. Bowser.

In addition to offering a multitude of clinical trials (see story on previous page), the center will also partner with community and national organizations to maximize their research potential.

They have already signed an agreement for a collaborative research program with the University of Arizona College of Medicine in Phoenix, and they anticipate forming partnersips with pharmaceutical companies to facilitate the development of new drugs.

“With grant monies becoming more and more limited, pharmaceutical partnerships will become an important piece of the puzzle,” explains Dr. Ladha.

The center’s namesake, Gregory Fulton, was a patient at Barrow before his death from ALS in 2011.

The construction of Gregory W. Fulton the center was primarily funded by a $2.7-million gift from his parents, Ira and Mary Lou Fulton.

Biomarkers the key to personalized care These are the type of questions that Drs. Bowser and Ladha hope to answer in time. Much of their clinical research will focus on the discovery of biomarkers, biological markers that indicate the presence of disease or other conditions. Identifying these markers will allow for a personalized approach to treatment, in which individuals undergo different treatments based on their genetic or biochemical makeup.

Also key in making these discoveries is the center’s new tissue banking program, in which patients elect to donate their brain or spinal cord after their death. “It’s very important to have these types of tissues to look at the cells and better understand the pathology of the disease,” says Dr. Bowser. “It just adds to our armament of what we can do for patients in the future.” ■

Comfort was top of mind in designing the multidisciplinary center. The nature-based décor evokes a sense of tranquility and hope. The artwork and photographs were created by donors or patients with ALS.

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Barrow Magazine Gregory W. Fulton ALS and Neuromuscular Disorders Center

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Mary Lou and Ira A. Fulton with Bertie Bowles

Fulton family and friends celebrate grand opening of namesake center About 150 people gathered on December 3 at Barrow Neurological Institute to celebrate the completion of the Gregory W. Fulton ALS and Neuromuscular Disorders Center.

Special guests of honor were Ira A. and Mary Lou Fulton, whose generosity made the new 32,000-square-foot facility possible.

After a reception, lunch and program, guests toured the center. “Wow! The design is just gorgeous,” said one family member as she stepped into the center’s spacious reception area.

Shafeeq Ladha, MD, Mary Lou and Ira A. Fulton and Robert Bowser, PhD

Gregory W. Fulton ALS and Neuromuscular Disorders Center Barrow Magazine

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by Diane Boudreau

Brain tumor research

Barrow scientists go into high gear to defeat one of humankind’s deadliest cancers ■ Glioblastoma multiforme (GBM) is the most common malignant cancer that forms in the brain. It is also the deadliest. Nearly two-thirds of people diagnosed with this aggressive tumor die within a year. Fewer than five percent survive for five years. [source: National Brain Tumor Society] “Brain tumors are the deadliest cancers known to man,” says Nader Sanai, MD, a neurosurgeon and researcher at Barrow. “They are extremely ruthless, and they have been, to date, resistant to any of our treatment efforts.”

The obstacles to treating brain tumors are both internal, due to the nature of the brain and the tumors that affect it, and external, due to limited resources and the nature of clinical research.

Yael Kusne, Nader Sanai, MD, and Ning Su, MD

“Many of the problems I deal with in the operating room are ultimately going to be solved in the lab.”

Nader Sanai, MD

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Solving these challenges requires a multifaceted approach that involves understanding how tumors form and migrate, developing ways to deliver treatments and testing those treatments. Scientists in the Barrow Brain Tumor Research Center (BBTRC) are uniquely positioned to accomplish these goals.

“When I arrived, Barrow had one of the largest, if not the largest, operative brain tumor volumes in the United States, but didn’t really have a research program that was commensurate with that,” explains Dr. Sanai, who is director of the BBTRC and also leads one of its three labs. “We tried to create a complementary system where we would develop basic science, translational science and clinical research that would take advantage of the clinical volume.”

Although surgeons can often remove the main mass of a brain tumor, some cancerous cells remain behind.

Radiation and chemotherapy have proven ineffective at stopping the recurrence of cancer.

Developing highly targeted drug therapy Shwetal Mehta, PhD, is a molecular biologist who came to Barrow from the Dana Farber Cancer Institute and leads one of the BBTRC labs. She studies the biology of tumor cells in order to find better ways to stop them.

“I was drawn to Barrow because this is a place where you can really do translational research,” she says. “Working with the clinicians, you really get an understanding of what goes on in the clinics. It’s very difficult for basic scientists to know that when you’re always inside your laboratory.”

Dr. Mehta’s research focuses on a protein called olig2, which is expressed in stem cells in the brain. It is also involved in malignant brain tumors, because it blocks the function of a tumor suppressor gene. This allows tumor cells to proliferate out of control.

Olig2 is a good target for drug ther-

The Barrow Brain Tumor Research Center has been chosen by the Women’s Board of Barrow Neurological Foundation as their Women’s Board Project for the 2014 Barrow Grand Ball.

Rachael Sirianni, PhD

Shwetal Mehta, PhD

Barrow Brain Tumor Research Center Barrow Magazine

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apies because it is only expressed in the central nervous system. Treatments that knock it out would not harm the rest of the body. However, it exists in healthy brain cells as well as tumors, so blocking it completely could damage those cells. Dr. Mehta is trying to identify interactions between olig2 and other proteins that are involved in cancerous growth. Drugs that block those interactions could stop tumor growth without harming healthy tissue.

“The whole idea is coming up with highly targeted therapies so you’re not treating patients with drugs that can affect all of your cells,” she says.

Halting tumor growth is just one part of the solution, however. Research suggests that shutting off tumor growth might signal cancerous cells to migrate to other parts of the brain, invading healthy tissue.

Testing drugs in 3D To learn more about what triggers cells to migrate, Dr. Mehta is working with Rachael Sirianni, PhD, a biomedical engineer who leads another lab in the BBTRC. Dr. Sirianni has developed special scaffolds for growing cell cultures in 3D instead of in a flat petri dish.

When cells are moved into a twodimensional medium, their behavior changes. They may become more sensitive to drugs, for instance. And brain tumor cells typically lose their invasiveness. As a result, testing drugs in 2D cultures is likely to give misleading results.

“Cells behave fundamentally different in 3D,” explains Dr. Sirianni.

“When we make a scaffold, the cell can move in three dimensions; it can attach to things and pull and grab. We try to design these scaffolds to capture essential elements of the brain.”

As an engineer, Dr. Sirianni brings a unique perspective to brain tumor research. She joined the center after doing post-doctoral work in drug delivery at Yale University.

“Drug delivery is the science of getting drugs where we want them to go, when we want them to go there,” she explains. “Brain tumors are an example of a human disease that is in desperate need of improved delivery options.”

Finding her position at Barrow was a bit of lucky happenstance.

“I saw a job posting for the BBTRC, and I emailed Nader and said, ‘I’m not a brain tumor scientist, but I work on technology that I think could really benefit brain tumor therapy,’” she says.

“It is an incredible opportunity to be doing drug delivery work in a translational context. This institute has unparalleled access to brain tumor tissue and clinicians who are acutely familiar with the challenges and obstacles that we need to overcome.”

Foiling the blood-brain barrier One of these obstacles is getting drugs past the blood-brain barrier. This

Al-Wala Awad

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Barrow Magazine Barrow Brain Tumor Research Center

barrier prevents potentially harmful materials in the bloodstream from getting into the brain. Unfortunately, it tends to block out the drugs, as well.

Dr. Sirianni designs nanoscale polymers—molecules arranged in a repeating structure—as carriers to transport drugs into the brain. After the particles slowly release their drugs, they will break down and be safely eliminated by the body.

“My lab focuses on designing the particles to interact specifically with the target tissue. We design them to get taken up into the brain and to be delivered specifically to brain tumors,” she says.

All cells in the body are surrounded by membranes. These membranes contain receptors that allow certain materials into the cell while keeping others out.

“What we do is attach things to the surface of our particles that interact specifically with the cell surface receptors on the blood-brain barrier and on the tumor,” she says.

One way she studies how to get particles into the brain is by looking at diseases that have already mastered this technique.

“Rabies is a good example. Rabies virus is extremely effective at reaching the brain,” she says. “So we take a part of the virus that doesn’t cause an immune reaction or any toxic effects.

We take the part of the virus that enables it to travel along the nerve and put that

Alesia Prakapenka

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Kyle Householder

on our particle, and we find our particles are able to get into the brain.”

Speeding up discovery via phase 0 trials Dr. Mehta’s work on understanding what causes cells to go “rogue” can provide important direction for drug development. And Dr. Sirianni’s work in drug delivery can help the resulting therapies hit the right targets. But new treatments require extensive, expensive testing before they can be brought to market.

“What we’ve run into year after year are a series of failures in our clinical trials and millions, even billions of dollars going toward development of drugs that ultimately don’t pan out,” says Dr. Sanai.

To save time and money while identifying promising treatment candidates, he is planning a series of phase 0 clinical trials.

Traditionally, drug trials occur in three phases. Phase 1 evaluates a drug’s safety in humans. Phase 2 determines if it is effective. Phase 3 involves a larger group of subjects to confirm effectiveness and monitor side effects.

The FDA created phase 0 trials as a way to bring new drugs to market faster.

These trials involve very small numbers of subjects who receive sub-therapeutic doses of the drug being tested.

Dr. Sanai will give patients a small dose of experimental drug before surgically

removing their tumors. He can then test the patient as well as the tumor to see if the drug arrived at the tumor and whether it is modulating the target as intended.

“If those two things are happening, then you know that the drug could be a winner, and it’s something that’s worth investing more time and money in pursuing through larger and more extensive trials,” he says. “On the flip side, if it’s not achieving those fundamental goals, then you know very quickly that you don’t need to pursue this drug any further.”

While phase 0 trials would cost several hundred thousand dollars to conduct, phase 1 or 2 trials typically require about $10 million. For brain tumor research in particular, this cost difference is critical.

“Brain tumor research doesn’t get the resource allocation that other cancers get because it is less common, number one,” explains Dr. Sanai. “Number two, there’s less survivorship, so there’s less of a voice in support of this kind of research. And number three, because the clinical market is small, pharmaceutical and biotech companies are less likely to choose this tumor as a target for therapy.”

He has several trials lined up already with Merck, Novartis and other pharmaceutical companies.

“We’ve been very impressed with the response we’ve gotten from industry in terms of their enthusiasm for

this,” he notes. “What we’re essentially doing is tilting the tables to remove any barriers they might see in terms of allowing their drugs to be investigated in brain tumor patients.”

Partnering with others Scientists in the BBTRC also collaborate with local companies and universities to broaden their capabilities.

“It’s about leveraging our local assets, whether it’s with Arizona State University, whether it’s with TGen, whether it’s our affiliation with the cancer center at the University of Arizona. We think all boats will float if we work together,” Dr. Sanai says.

All of the researchers cite Barrow’s rare combination of research and clinical work as a tremendous strength.

“Many of the problems I deal with in the operating room are ultimately going to be solved in the lab,” Dr. Sanai says. “I feel that the only way to make progress in the field is to push on both fronts. That’s what I’m here for.” ■

To learn how you can support the Barrow Brain Tumor Research Center, please call Barrow Neurological Foundation at 602-406-3041 or visit SupportBBTRC.org.

Barrow Brain Tumor Research Center Barrow Magazine

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by Catherine Menor

Moyamoya disease Barrow a leader in treating rare disease that shows up as a “puff of smoke” on brain scans ■ Raquel Gibson, Casa Grande, could be the poster child for a rare vascular brain disorder called moyamoya disease: She is a woman in her 30s of Asian descent who suffered a stroke despite having none of the expected risk factors.

And, though she is a nurse, she had never heard of moyamoya disease until her diagnosis in 2012.

The doctor who diagnosed Gibson told her there was nothing that could be done for her. He counseled her to enjoy the rest of her life—from six months to two years at best, he said.

Her husband, Wayne, believed there must be an answer to his wife’s condition. He consulted his company’s “Best Doctors” program and was referred to Robert Spetzler, MD, at Barrow Neurological Institute. Dr. Spetzler sent the couple on to John Wanebo, MD, a Barrow neurosurgeon who in 2001 did a cerebrovascular fellowship at Barrow under Dr. Spetzler’s guidance.

Dr. Wanebo has become Barrow’s resident moyamoya expert. He developed an interest in the disease while serving in the Navy and seeing cases like Gibson’s in patients of Asian descent.

“The disease causes the internal carotid artery in the brain to block off,” Dr. Wanebo says of the unusual vascular disorder. “Moyamoya occurs so slowly that the body develops collateral blood vessels to compensate for the loss of blood flow to the brain. Those tiny vessels look like a puff of smoke on an xray, which is what ‘moyamoya’ means in Japanese.”

While there is no cure for moyamoya disease, neurosurgeons can perform bypasses—either direct or indirect—to increase blood flow to the brain and prevent stroke, the calling card of the disease.

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Barrow Magazine Moyamoya disease

Moyamoya Disease Diagnosis and Treatment John E. Wanebo Nadia Khan Joseph Zabramski Robert F. Spetzler

Barrow neurosurgeons Robert Spetzler, MD, John Wanebo, MD, and Joseph Zabramski, MD, along with Nadia Khan, MD, of University Children’s Hospital Zurich, recently published the first North American professional book on moyamoya disease in 12 years. Moyamoya Disease: Diagnosis and Treatment was released in October.

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In direct bypasses, the surgeon connects an artery taken from the scalp to an artery in the brain to increase blood flow to the brain. These procedures have the advantage of immediately increasing blood flow and are the preferred approach in adults. Direct bypasses are difficult in children, whose blood vessels are smaller.

In indirect bypasses, the surgeon places tissue taken from another part of the body, such as the muscles of the scalp, directly onto the surface of the brain so that the vessels grow from the grafted tissue into the brain. Revascularization occurs within six weeks to three months. Vessels grow more quickly in children, making indirect bypasses the preferred approach for many pediatric patients.

“The general consensus now is to do a direct bypass if you can and an indirect bypass if direct bypass is not feasible,” says Dr. Wanebo.

In Gibson’s case, Dr. Wanebo took a wait-and-see approach. He cancelled her first scheduled surgery after determining that her blood flow was not constricted enough to warrant surgery.

“It’s a race between how fast the brain can revascularize versus how fast the carotid arteries block off,” he explains.

By June 2013, though, Gibson was experiencing headaches, memory problems and forgetfulness, and her blood pressure was creeping up to dangerous highs. The time had come for surgery.

Dr. Wanebo performed a direct bypass on Gibson in August 2013, and the results were immediately apparent.

“She was talking right after surgery,” says her husband. “She speaks better, is more alert now, and her memory is better than before the surgery.”

Gibson left the hospital four days after her surgery and returned to work in November.

“I am really thankful for the surgery,” she says, “and I’m looking forward to being back to at least 95 percent of what I was.”

For Dr. Wanebo, Gibson is a perfect example of why he hopes to create a dedicated center for moyamoya disease at Barrow where specialists—neurosurgeons, neurologists, rehabilitation specialists, neuropsychologists, neuroradiologists, scientists and others—come together to diagnose, treat, rehabilitate and research this rare disease.

“Barrow has been a pioneer in developing revascularization procedures for three decades. A moyamoya center is a natural fit for our institute.” ■

Facts about moyamoya disease • Moyamoya” means “puff of smoke” in Japanese, a description of what neuroradiologists see on scans of people with moyamoya. The disease was first described in Japan in the 1960s.

• Moyamoya disease causes the internal arteries in the brain to become blocked.

In response to the diminished blood flow, a tangle of tiny blood vessels develops to supply the brain with blood, but these vessels are weak and prone to bleeding.

• The first symptom in children is often a stroke or transient ischemic attacks.

• Adults in North America with moyamoya disease also usually present with stroke symptoms because of inadequate blood flow or hemorrhage.

• Without surgery, most people with the disease will experience mental decline and multiple strokes because of progressive narrowing of arteries. * Information from the National Institute of Neurological Disease and Stroke website.

Additional information can be found by searching “moyamoya disease” on the website TheBarrow.org.

Raquel Gibson and John Wanebo, MD

Moyamoya disease Barrow Magazine

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Girls’ day out

Craniofacial center treats patients to salon day and lunch ■ On Aug. 11, a dozen young women who are patients of the Barrow Cleft and Craniofacial Center were treated to a day of beauty at Atmosphere: A Paul Mitchell Focus Salon and lunch afterward at North. Their mothers and Barrow craniofacial staff members participated in the event, which was funded by Barrow Neurological Foundation.

Danielle Valiente, the owner of the salon, and seven stylists donated their time to make the pampering session possible.

“We make people look and feel beautiful, and that’s the reward for us, so any time we can pass that along, we’re happy to do that,” she said.

The girls received a hair styling, make-up application and manicure. ■

Group photo, top row: Ciara Humbert, Victoria Kalberg, Guadalupe Sifuentes, Karla Lopez, Danielle Roberts; bottom row: Angelica Garcia, Nikki Gonzalez, Jackie Wittenberg, Ariana Perez.

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Barrow Magazine Barrow Cleft and Craniofacial Center

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by Melissa Frederick Morrison

Amazing medicine Stories from the files of Barrow Neurological Institute Ian Yates Ian Yates, 7, had bumped his head horsing around with a cousin. A few weeks later, he started seeing double, vomiting and staggering when he walked. He told his parents his head hurt like it was going to explode. A visit to the ER resulted in the discovery of a rogue mass of blood vessels in Yates’ brain that had begun bleeding.

After he awoke from the lengthy surgery to remove the mass, Yates— who had been a karate-kicking boy known as “motor mouth”—could barely move or speak.

“It was like having a newborn baby,” says his mom, Veronica. “He couldn’t sit, stand, hold up his head. He couldn’t even swallow.”

The cause, a tangled-spaghetti clump of vessels called a cavernous malformation, was non-cancerous. But it was on Yates’ brainstem, a key bit of brain that regulates basic functions like heartbeat and breathing. If it hadn’t been caught, it could have caused a permanent disability, coma—even death.

Yates was helicoptered to Barrow Neurological Institute, where Peter Nakaji, MD, an expert in cavernous malformations, performed the surgery.

“It was a little less than eight hours, though I am sure it seemed longer to his parents,” Dr. Nakaji says. “The location was tricky, in the upper brainstem, but fortunately we were able to get good access and remove it completely.”

Then came the hardest part for Yates and his family: recovering.

“I remember waking up thinking, ‘Where am I?’ and seeing my parents,” says Yates, now a seventh-grader at Hillcrest Middle School in Glendale. “I tried to talk, but nothing came out.”

Yates was experiencing a rare complication called cerebellar mutism. The causes are unknown, but those affected by it always recover their speech

eventually, according to the Childhood Brain Tumor Foundation.

Yates’ returned about 10 days later.

“One morning I woke up and said, ‘Good morning. … Mom! I just talked!’”

Yates then spent four weeks in the Deborah and Bruce Downey Neurorehabilitation Center, working eight hours a day with therapists. His mother took leave from her job in JC Penney’s human-resources office. One parent was with him all the time, spending nights on the recliner in his room, while the other was home with Yates’ little brother, Alec, who was 2.

For his mom, the low point came watching Yates play catch with a therapist.

“I went outside and called my sister, ‘This was a kid who two months ago was so vibrant. Now he can barely throw a ball,’” she says.

But Yates progressed quickly. After formal therapy ended, and he came home, he resumed karate and skateboarding—“sneaky therapy,” dad, John, calls it. He sometimes ignored his left side, one time breaking his elbow when he fell and didn’t instinctively put out both arms to stop it. But karate required him to kick and punch with his left side. Skateboarding required balance.

The first time Yates karate-kicked after his surgery, he fell. But he persisted.

Before surgery, he had earned a yellow belt, the second belt after white. After surgery, he continued through the spectrum— orange, green, blue, purple, red, brown— until he achieved the ultimate, black.

It took five years. The instructors didn’t cut Yates any slack for having had brain surgery. He failed his first attempt to get his brown belt.

“I just kept trying at it, and I finally got it,” he says.

For his black belt, he had to perform an arduous routine that included 75 push-ups, 75 squats, five flawless katas (fighting sequences) and five rounds sparring with an adult sensei.

His father says, “He’s got a great attitude: ‘I don’t care how long it takes, I’m going to get it done.’”

Yates no longer practices karate— “After the black belt, I felt there was really nothing left to do,” he says—but is obsessed with skateboarding and BMX biking.

He has a tiny scar behind his right ear and must get an MRI every three years. Dr. Nakaji has reassured his parents that there is no evidence of any remaining cavernous malformation in Yates’ brain and that he is most likely cured for life.

Veronica says, “It was just dumb luck he had fallen in the first place.

Now I’m the biggest believer in dumb luck.”

Ian Yates

Amazing medicine Barrow Magazine

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Bill Hintz

by Sally Clasen

William “Bill” Hintze William “Bill” Hintze, a non-smoker, never imagined he’d have lung cancer.

And he certainly never gave brain cancer any thought. But within a few months in 2002, the Phoenix-based contractor and real estate developer had received both diagnoses.

“I had a cold and persistent cough that wouldn’t go away, so I went to an urgent care center, where the staff there took an X-ray and told me I had bronchitis that had probably developed into pneumonia,” explains Hintze, who is now 72 and semi-retired.

Three days later, he received a call from the urgent care staff with concern that he actually had a mass on his lungs and should seek further evaluation.

Hintze made an appointment with pulmonologist Amy Silverthorn, MD, who ordered additional diagnostics including a biopsy. The test revealed that Hintze had lung cancer.

He was then referred to Ravi Kopoot, MD, a cardiothoracic surgeon who removed the upper left lobe of his lung and then referred him to oncologist Albert Wendt, MD. Dr. Wendt told Hintze that his cancer was a rare stage 3 cancer that carried a 40 percent chance of survival. Due to the rarity of the tumor and the cancer progression, his treatment options were limited to inpatient chemotherapy.

“I decided to take my chances and not go through that rough experience since there were no guarantees it would work,” Hintze says.

Two months later, he and his wife, Bernadette, headed to their home in Huntington Beach, California, for Memorial Day. A few days into the trip, “I thought I was having a stroke,” Hintze says. “I was slurring my words, dragging my left foot and having trouble using my left hand. I knew what I wanted to say, but I could hardly talk.”

He and his wife immediately headed back to the Valley where Dr. Kopoot found that Hintze’s lung cancer had metastasized to his brain, threatening his survival even more. “I learned that

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Barrow Magazine Amazing medicine

when cancer metastasizes to the brain, 99.9 percent of people don’t survive,” says Hintze. Three days later, Robert Spetzler, MD, director of Barrow Neurological Institute, removed his brain tumor.

Hintze participated in physical therapy after his surgery and underwent Gamma Knife radiosurgery to help remove residual lesions in the brain.

Gamma Knife radiosurgery delivers high doses of targeted rays to brain lesions, sparing surrounding healthy tissue. Image mapping is used during the procedure to help surgeons pinpoint the radiation beams with extreme accuracy. Neurosurgeon Kris Smith, MD, medical director of Barrow’s Gamma Knife Center, performed the procedure on Hintze less than one week after his brain surgery.

“Gamma Knife allows us to resect the bed of the tumor without causing exposure to the rest of the brain. There is no cutting, bleeding or stitches, and patients usually can return home the

same day. It’s a preferred procedure over traditional whole brain radiosurgery, which can create cognitive side effects and diminished quality of life,” explains Dr. Smith. “With Gamma Knife, the patient is essentially cured. It’s an example of how we approach all patient care at Barrow. Our goal has always been to treat disease more focally and avoid long-term side effects.”

Today Hintze remains cancer-free and has no complications from his complex medical odyssey.

“I feel like a combination of good doctors, a good hospital, my loving wife and family, and faith in God got me through this,” he says of his 13-year survival. “If I were another patient and heard this story, it would give me hope.”

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by Carmelle Malkovich

Nathanael Price Neurosurgeons at Barrow Neurological Institute successfully removed a deadly brain lesion from a 17-year-old Tennessee boy after his family was told by multiple physicians that his malformation was too risky and impossible to completely remove.

Following surgery by Robert Spetzler, MD, director of Barrow, in September and after more than six weeks recovering in the hospital, Nathanael Price returned home to Mount Juliet, Tenn., where he is recovering.

Diagnosed with an arteriovenous malformation (AVM) at age 13, Price underwent eight brain procedures including two bouts of radiation over a four-year period to shrink the lesion, but treatment was unsuccessful.

An AVM is an abnormal tangle of arteries and veins in the brain. The vessels in an AVM weaken over time, making them prone to rupturing and bleeding. It wasn’t until Price arrived at Barrow that doctors learned his AVM was already causing small micro bleeds inside his brain.

“We were desperate to find Nathanael help, and we were absolutely thrilled when we heard there was a brain surgeon—Dr. Spetzler in Arizona —who could successfully remove the lesion,” says Chris Price, Nathanael’s father. “We found him at just the right time.”

Price was referred to Barrow after suffering two serious seizures while volunteering at a children’s camp in Colorado this summer. His family was told by a neurosurgeon in Colorado that Dr. Spetzler was the only brain surgeon who could attempt to remove the entire malformation from Price’s brain.

Price underwent a 12-hour brain surgery in addition to five other procedures at Barrow to successfully remove the entire AVM. Following surgery, Price underwent intensive physical, occupational and speech therapy

in the Deborah and Bruce Downey Neuro Rehabilitation Center.

“Nathanael’s treatment was very complex given the size and location of the AVM, and I am delighted at how well he is recovering,” says Dr. Spetzler.

While undergoing therapy, Price received a surprise when he was invited to meet one of his favorite country music bands, the Zac Brown Band. The band reached out to Price upon learning of his successful recovery.

“I was excited when I learned the Zac Brown Band wanted to meet me,”

says Price. “I had been in the hospital for six weeks and never thought I’d be meeting one of my favorite bands during my recovery.”

Now at home, Price is looking forward to returning to his studies, church and outdoor activities.

“I suffered with the AVM for a long time, and I’m thankful to be putting it behind me,” says Price. ■

Nathanael Price, Christina Kwasnica, MD, and Robert Spetzler, MD

Amazing medicine Barrow Magazine

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by Sarah McGrain Padilla, Carmelle Malkovich and Sally Clasen

MRI-guided laser surgery New procedure gives young men seizure-free futures

Peter Nakaji, MD; Francisco Ponce, MD

■ On the surface, Anthony Boldt and Chris Murto don’t appear to have much in common—the former is an 18-yearold baseball player, while the latter is a 29-year-old computer programming hopeful. But not only have the two Arizona men both suffered from debilitating seizures, they have also seen their seizure activity come to an abrupt halt after undergoing a remarkable minimally invasive procedure at Barrow.

Boldt and Murto were among the first Barrow patients to be treated with an innovative laser technology that uses light energy to destroy brain lesions, such as tumors and other malformations. Barrow is one of only three hospitals in Arizona, and the first in Phoenix, to offer the FDA-approved technology.

In the unique surgery, a small laser probe is inserted through the skull until

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it pinpoints the lesion. Light is delivered through the probe, causing temperatures in the target area to rise and destroying the unwanted tissue in seconds. Because the procedure is guided by real-time MRI images, it provides precise targeting and lessens damage to surrounding healthy tissue.

Worth the wait This type of minimally invasive procedure is what the Murto family had been waiting on for nearly three decades.

Murto was born with a hypothalamic hamartoma (HH), a benign tumor that can cause severe seizures, brain damage and progressive cognitive impairment. By the time Murto was 13, his tumor had caused a rapid increase in seizures and such a drop in IQ that doctors told his parents he

Barrow Magazine MRI-guided laser surgery

would never be able to live an independent life. As an adult, he was having several seizures a day.

The Murtos researched new HH surgeries as they were introduced but considered each too risky. When they learned that Murto was a candidate for the new laser technology, which became available at Barrow in November 2012, they decided it was his best option. Barrow neurosurgeons Peter Nakaji, MD, and Francisco Ponce, MD, collaborated on Murto’s surgery to ensure the most accurate planning and precise execution.

A breakthrough for HH patients “Before this type of technology, patients with HH had to undergo invasive surgery to remove the mass,” says Dr. Nakaji. “The new laser surgery is

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minimally invasive and usually requires a single stitch and a one-night’s stay in the hospital.”

Other benefits of the procedure include the fact that it does not require radiation, causes little to no pain and can be performed while the patient is awake, eliminating the need for general anesthesia.

Murto has not had one seizure since undergoing the procedure in August.

“This surgery has changed my life,” he says. “It’s amazing to have instantly gone from having 250 seizures a month to not having one. After all these years, I’m finally able to live an independent life.”

Migraines and seizures Boldt, now a senior at Gilbert High School, began to develop migraine-like headaches that would force him to miss several days of school when he was 10.

“The migraines were brutal,” he says.

But that was just the beginning of his health issues. When he was 16, Boldt started having seizures that produced auras, or flashes of light, vomiting, visual loss and blackouts.

At one point, he was having five to six seizures a week.“I was jumping

Anthony Boldt

through a series of medications, trying to find one that worked. I would start a new one, and the seizures would slow down for a few weeks but then start again,” he says.

The debilitating effects touched every part of his life, including baseball.

“I was up at bat and didn’t know what was happening. I called a time out, and my coach walked me down the side of the field. He told me I blacked out for 10 seconds,” Boldt says. Because of the increasing frequency of his seizures, he didn’t play baseball his junior year.

Eventually, Boldt was referred to Barrow neurologist Steve Chung, MD, who diagnosed the teen with left occipital cortical dysplasia, a brain abnormality that causes neurons to misfire and produce epileptic seizures. Dr. Chung consulted with other Barrow experts, and all agreed Boldt was a good candidate for the new procedure.

“We knew he was taking multiple medications that were failing, we knew the origin of the seizures, and we knew we could safely do the brain surgery without risking his vision,” says Dr. Chung, director of epileptic research at Barrow.

A first for Barrow Barrow neurosurgeon Kris Smith, MD, performed Boldt’s surgery in July.

It was the first time the procedure had been used at Barrow for that particular diagnosis. “It’s not a cure-all for epilepsy, but it’s promising for medically-resistant symptoms,” says Dr. Smith.

Time will tell whether it will be a “cure-all” for Boldt, but, like Murto, he has not had a single seizure since his surgery. In fact, he is back to playing baseball and looking forward to high school graduation. Murto, meanwhile, has hopes of becoming a video game programmer.

Thanks to this procedure, these two young men, who once shared a similar and frustrating past, now share hope for a fulfilling—and seizure-free— future. ■

Chris Murto and his parents

MRI-guided laser surgery Barrow Magazine

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by Sarah McGrain Padilla

A second chance

Downward spiral leads to a new purpose for Payson teen

■ Ronny and Wendie Woolwine hadn’t seen their teenage daughter in nearly four months when a uniformed police officer arrived at their Payson home.

The news he delivered was a parent’s worst nightmare: 19-year-old Kayla was unresponsive in a Valley emergency room. She was being transported to Barrow Neurological Institute.

Almost a year later, Kayla’s story has a happy ending. But it’s been a rocky road and one that she wants to help others avoid.

“I got addicted fast” Kayla, now 20, was a typical teenager with a typical childhood, growing up with her parents and younger brother, Daniel, in Payson. She loved volleyball and played the sport year round. But the constant jumping and exertion aggravated Kayla’s fibromyalgia and osteoarthritis. At 17, she started taking prescription oxycodone for chronic pain.

“I got addicted really fast,” admits Kayla.

Her addiction to pain pills quickly escalated to more drug use, and after

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Barrow Magazine Kayla Woolwine

graduating from high school, Kayla’s parents convinced her to undergo a drug rehabilitation program. Its effects were short lived. It wasn’t long before Kayla had quit school and work and abandoned her closest friends. Within months, she was experimenting with heroin.

“By Halloween, she left home because she just couldn’t face us anymore,” says Wendie, Kayla’s mom.

The teenager reached out to her family occasionally over the next couple of months, mostly to ask for money.

But in January, all contact stopped.

When they had exhausted every resource in searching for her, Kayla’s parents turned to faith.

“On Sunday night, I sat down and prayed the biggest prayer of my life— to bring Kayla through her fire,” says Wendie. “I just gave her to God because I couldn’t do anything as a mom anymore.”

An answered prayer The following day, Feb. 18, 2013, someone—they still don’t know who— left Kayla for dead at a Mesa emergency

room. She was unresponsive, and, although there was no sign of trauma, her brain was hemorrhaging. She weighed only 100 pounds.

“I took one look at her and said, ‘She’s not going to live through the night,’” says Kayla’s father, Ronny. “I was planning her funeral.”

Kayla’s doctors discovered that she had developed a septic, or system-wide, infection, most likely from intravenous drug use. The infection had damaged Kayla’s heart, which was dispersing tiny infected blood clots throughout her body. One clot had traveled to her brain and caused a stroke and subsequent hemorrhaging. Kayla’s organs were slowly shutting down. Her parents were advised to hope for the best, but to expect the worst.

Over the next several months, there would be a little of both. Kayla underwent multiple procedures to regain her health. First, Barrow neurosurgeon Taro Kaibara, MD, placed an external ventricular drain (EVD) into Kayla’s brain to help remove excess fluid. Next, she had a risky open-heart bypass procedure in which cardiothoracic surgeon Kevin

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“On Sunday night, I sat down and prayed the biggest prayer of my life—to bring Kayla through her fire.”

Wendie Woolwine Brady, MD, replaced Kayla’s ailing mitral valve with a bovine (cow) valve.

Several weeks later—still unresponsive and on a ventilator—Kayla developed pneumonia and then empyema, a lung infection involving a build up of fluid in the cavity surrounding the lungs. She underwent a final procedure to clear up the infection.

The next day, six weeks after arriving at the hospital, Kayla sat up in bed and smiled at her dad.

A new beginning Once she was strong enough, Kayla was transferred to the Deborah and Bruce Downey Neuro Rehabilitation Center, where she impressed her therapists and nurses with her motivation and drive.

“Though she entered the rehabilitation program still very thin, with a breathing tube in her neck and weak from all that she had battled, Kayla’s spirit helped her meet and exceed all our expectations. It was amazing to watch,” says Christina Kwasnica, MD, medical director of Barrow’s inpatient rehabilitation program.

Kayla had set a goal to walk out of the hospital on her own. And on May 9—80 days after being admitted—that’s just what she did. “It was the best Mother’s Day weekend ever,” remembers her mom.

While Kayla continues to get stronger and healthier, she has a ways to go before she is fully recovered. Her heart is still weak, and she is regaining weight. Most noticeably, she suffers from expressive aphasia, a condition in which people know what they want to say, but have difficulty finding the right words or communicating their

thoughts. With time and speech therapy, Kayla’s communication skills should recover.

In the meantime, it’s a small price to pay for an ordeal that could have had a much different outcome—and the entire family counts their blessings. They are extremely grateful for the care they received at St. Joseph’s and Barrow and for the outpouring of support from the Payson community. But mostly, they are grateful for their daughter’s second chance at life.

Kayla says that she has found both a renewed sense of purpose, as well as

faith. She can cite several instances during her hospital stay in which she believes she communicated with God and learned that she was given a second chance to help others. Today, her goal is to become a motivational speaker to encourage other teens to stay away from drugs.

And while Kayla struggles to find exactly the right words to summarize her journey, her calling is clear. “If I knew then what I know now, I wouldn’t change anything because there are things that people need to know, and I can teach them,” says Kayla. ■

Kayla Woolwine with Nathan West, PT

Kayla Woolwine Barrow Magazine

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by Catherine Menor

Why I give

Sy Syms Foundation’s gift honors family’s loved one and the Parkinson specialist who cared for him ■ The Sy Syms Foundation made its first gift to the Muhammad Ali Parkinson Center in 2010. But the roots of that gift reach back 30 years and tell the story of an American family founded on hard work and dedicated to philanthropy.

Sy Syms was the child of Russian immigrants. In 1959 he opened SYMS, New York City’s first off-price clothing retailer. Over the next 50 years, Sy’s clothing store became a household name in New York, and his company eventually expanded into 16 states.

Marcy Syms, the eldest of Sy’s six children, joined the SYMS Corporation in 1978 when her father expanded the business to include women’s clothing. She remained with the com-

pany until it closed in 2012. Marcy served in various roles, including director of marketing and real estate, chief operating officer and, after Sy gave up the title of CEO in 1998, chief executive officer.

Part of the company’s budget was directed to philanthropy and community support, says Marcy. “That was always part of our culture.”

In 1985, Sy cemented his commitment to philanthropy by establishing the Sy Syms Foundation with personal funds. Marcy, a founding trustee, says that the foundation was her father’s way of giving back to his community.

“I think he was always very conscious of how fortunate he was,” Marcy

says. “His parents came to this country with nothing. He went to college on the GI bill and bought his first home with a GI loan. He felt blessed to be an American, and he loved New York City.”

Through the years, the Sy Syms Foundation has supported the advance of science, education and the arts, and has provided important funding to such organizations as Public Television, National Public Radio and the Sy Syms School of Business at Yeshiva University. Another area of focus has been medical research into diseases, particularly those that have had an impact on the Syms family.

And that is where this family’s story intersects with the Muhammad Ali

Marcy Syms and her father, Sy Syms; Abraham Lieberman, MD

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Barrow Magazine Why I give

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Parkinson Center, nearly a continent away.

In 1980, Sy’s brother-in-law, Joe Freiberg, was receiving care for Parkinson’s disease from a general practitioner in New York. Joe’s son, Mark, decided it was time to take his father to a neurologist specializing in Parkinson’s disease. The physician he chose was Abraham Lieberman, MD, a professor at New York University Medical Center.

Mark soon saw the difference a specialist can make. Under Dr. Lieberman’s care, Joe participated in one of the first clinical trials for dopamine agonists.

“The trial helped. It gave him a better quality of life for a while—less shaking and more mobility,” says Mark. “He loved Abe. Abe has a great bedside manner. All doctors should have the warmth that Abe Lieberman has.”

Mark stayed in contact with Dr. Lieberman after his father died in 1989, even when the neurologist left New York for Barrow Neurological Institute.

He never forgot all that Dr. Lieberman had done for Joe.

When Mark became a trustee of the Sy Syms Foundation in 2010, he was finally able to express his gratitude to Dr. Lieberman, who by then was the director of the Muhammad Ali Parkinson Center at Barrow.

Mark, who had seen firsthand the difference specialty training can make for Parkinson’s patients, was able to convince his fellow board members that fellowship training at the Muhammad Ali Parkinson Center deserved their support. That year, the Sy Syms Foundation made the first of several gifts it has made for fellowship training at the center.

The gift was a fitting one, reflecting the Syms family’s commitment to education and medical advancement, their love of family and their gratitude to Dr. Lieberman.

“It feels good to give back,” says Marcy. “It just makes life worth living.” ■

Naomi Salins, MD, completed a fellowship at the Muhammad Ali Parkinson Center.

Joe and Edith Freiberg and their son, Mark

Why I give Barrow Magazine

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by Melissa Frederick Morrison

Nurse exchange program Donor-funded fellowships bring nurses to Barrow from around the world ■ Nurses do things differently in different countries. They Mavin, of Glasgow’s Southern General Hospital, spoke on receive different educations, have different responsibilities, the optimum frequency of neuro exams—systematic assessand, of course, work within different cultures. One con- ments of the patient’s thinking process and cranial nerve stant, however, is that the good ones continually seek to function—following a head injury. learn, so they can improve care to their patients. “[It was] well received and stimulated a healthy debate “If you are a nurse, the way you keep up to date is with my American colleagues,” says Mavin, practice develeither through reading journals, taking online continuing- opment sister at the hospital’s Institute of Neurological education courses or going to conferences,” says Virginia Sciences. (“Sister” is a British term for senior nurse.)

Prendergast, director of advanced practice nursing and eviThe newer Crist Exchange, which is funded by the dence-based practice at Barrow Neurological Institute. Warren and Mary Jane Crist Foundation, pays for three “You don’t really have protected time nurses—from the UK, the United States to go to a center of excellence and Just as patients from and another country—to travel elsedevote time to just looking at the nurs- around the world are where in the world to observe neuroing process—say, problems with immodrawn to Barrow for science nursing in practice. So far no bility or difficulty swallowing or delirAmericans have taken advantage, but its world-class ium. It’s not the same as seeing it in several foreign nurses have. practice.”

Nobuko Okubo, of St. Luke's Colreputation, so are But some nurses from other counlege of Nursing in Tokyo, Japan, was a nurses. tries are able to observe nursing at Bar2012 awardee. She timed her visit to the row firsthand, thanks to the Barrow Foundation UK and annual Barrow Neuroscience Nurse Symposium in Octothe Crist Expert Neuroscience Nursing Exchange. ber last year, where she presented a lecture on her work with Barrow UK has funded UK neurosurgeons to travel to stroke patients whose swallowing is impacted.

Barrow since 2003, due to a gift from Marjorie Newsome, Difficulty swallowing is a significant hazard of strokes. an American expatriate whose epilepsy was treated at the Taking food into the lungs can quickly result in pneumoinstitute. Recently, this has been extended to nurses also, nia and death, which is why assessing whether a stroke to foster international standards of care. patient can swallow safely is crucial. For patients who canDeb Ford is the 2012 UK award winner. She is a sen- not, rehabilitation is key. ior nurse in an intensive care unit (known as an ITU, or In American hospitals, nurses initially assess the patient’s intensive therapy unit) in Birmingham, England, at Queen swallow, but more complex assessments and therapy typElizabeth Hospital. She and her fellow winner and colleague, ically fall to speech therapists. In Japan, however, nurses Clare Thompson, came to Barrow in September. are much more engaged in the process, as symposium “We run a long-term follow-up clinic whereby we attendees learned. invite patients who have been in ITU back so we can disOkubo’s talk explained how ICU nurses in Tokyo made cuss their treatment and progress with them,” she says. “We special swabs by freezing green tea-soaked gauze around wanted to see what form of follow-up was in place at Bar- tongue depressors and using them to help patients safely row and were interested in the support groups that were stimulate and redevelop the swallow reflex. in place there.”

“In all patients, an aneurysm is an aneurysm no matDuring their two-week stay, Ford and Thompson met ter where you are in the world, so the patient problems are with and observed nurses in Barrow’s intensive-care units, the same,” Prendergast says. “What’s interesting is seeing long-term acute care area and operating room. how those deficits are cared for by people.”

“But what stood out most for us were the support The visiting nurses each spend approximately two groups run by a psychologist and an occupational thera- weeks in Phoenix, observing different Barrow units and talkpist for head-injured patients and their families,” she says. ing with staff, including nurse practitioners, charge nursThe experience was very rewarding, she says. “This is es and floor nurses. Some attend grand rounds, where something that, given the time and support, we would be Barrow physicians present on specific topics or cases. most interested in setting up here in our hospital.”

Anne Preece oversees nursing care of head-injured Part of the exchange includes the visiting nurses giv- patients at Queen Elizabeth Hospital and Medical Center ing a lecture on an element of their home practices. Claire in Birmingham. She preceded her colleagues Ford and

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Barrow Magazine Nurse exchange program

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Thompson, coming to Barrow as a 2011 Newsome winner to see how its nurses manage head and spinal injuries.

At Barrow, she noted how many procedures and treatment plans were similar to those in the UK. What struck her were differences in nursing education, nurse-to-patient ratios and nursing responsibilities. In Great Britain, for example, nurses take on management of ventilators, a task that American nurses typically defer to respiratory therapists.

She also wanted to look at patient populations specific to the United States.

“I was particularly interested in the Native American population and their health problems,” she says.

The visitors had time to be tourists, as well. In addition to learning how nurses care for Native American patients, Preece saw a hoop dancing demonstration at the Heard Museum.

The Grand Canyon was a popular draw for all of the nurses, as well as other local attractions, ranging from a Phoenix Suns game to a Tempe Town Lake outing.

Upon their return to their home countries, the nurses are expected to give a presentation about their experiences to their colleagues.

“I can’t say I changed anything when I came home—just an appreciation of different ways of working and the reaffirmation that no system is perfect,” Preece says. “We all have issues!” ■

Sue and Steve Smith

Virginia Prendergast and Trish Eells

Nobuko Okubo

Three nurses who received fellowships through Barrow Neurological Foundation attended the 2013 Barrow Nursing Symposium—Steve and Sue Smith from the United Kingdom and Nobuko Okubo from Japan.

Nurse exchange program Barrow Magazine

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Benefactor briefs Barrow Ball set for January 18 The Women’s Board of Barrow Neurological Foundation will present the annual Barrow Grand Ball on Saturday, Jan. 18, at the Arizona Biltmore. One of Arizona’s premiere fundraisers, the black-tie event will benefit innovative patient care, research and medical education at Barrow Neurological Institute.

The 2014 Barrow Grand Ball cochairmen are Kathleen Lang and Robyn Lee, and the Ball advisor is Mary Ellen McKee. The current Women’s Board chairman is Shän Francis. The women, together with a dedicated group of committee members, have worked all year to plan an unforgettable event.

“The success of the Barrow Grand Ball is a result of the wonderful Women’s Board of Barrow Neurological Foundation under the leadership of Shän Francis. We are also so thankful to our Ball advisor, Mary Ellen McKee, for her invaluable guidance,” says co-chair Kathleen Lang.

Each year, the Women’s Board selects a special project to support with funds raised through the Ball. The 2014 project is the Barrow Brain Tumor Research Center (BBTRC), which is dedicated to discovering the causes of and cures for brain tumors. The BBTRC places a heavy emphasis on clinical trials and has a goal of offering an exper-

imental therapy option to every Barrow patient diagnosed with a brain tumor.

Barrow sees among the highest volume of brain tumor patients in the nation.

“We are so fortunate to have a world-renowned institute like Barrow right here in our own backyard, offering groundbreaking research and treatment through programs like the BBTRC. We are very proud of and grateful to our community for their support and for realizing what a fine treasure Barrow truly is,” says Ball cochair Robyn Lee.

The Rick Oehme Foundation has made several contributions to Barrow Neurological Foundation (BNF) through the Beer for Brains Foundation.

In November they made their first outright gift to BNF to benefit the Barrow Brain Tumor Research Center.

Their gift of $20,000 will fund research into better treatments and cures for this devastating disease.

Riley Oehme, Lois Oehme, Tanner Oehme, Richard Oehme, Cynthia Oehme and Lauren Lattanza

Oehme Foundation contributes to brain tumor research Rick Oehme’s life was rich and full. He and his wife, Cindy, had raised two children. His career was on an upward trajectory, and he was vice president of technical services for US Airways. Rick pursued many interests: riding motocross, boating, water skiing, playing the drums and spending time with family and friends.

Then in 2008 he was diagnosed with terminal brain cancer. Despite receiving aggressive care at Barrow Neurological Institute, he passed away in 2012.

It was during the first year of his treatment that the Rick Oehme Foundation came into being. Faced with the realities of brain tumor treatment, his family and friends created the nonprofit to raise funds for patient care and research.

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Barrow Magazine Benefactor briefs

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Race Across America team raises $110,000 The Team Barrow cycling team, their support crew, family and friends gathered at Barrow Neurological Institute on Nov. 1 to present a contribution of $110,000 to Barrow Neurological Foundation for brain tumor research. The eight-man team raised the gift as part of their participation in Race Across America, a premier cycling event.

“I want to thank you for all your hard work,” said Tracey Kramer, one of the organizers of the effort.

Kramer paid special tribute to Jory Greenfield. It was Greenfield who suggested that they participate in Race Across America to honor Tracy’s father,

Jim, who died of a brain tumor, and to raise funds for brain tumor research.

The eight cyclists took turns pedaling from California to Maryland and completed the 3,000-mile race in six days, placing fourth among the eight teams in their division. What makes this accomplishment even more impressive is that one of the cyclists, Kyle Claffey, was undergoing chemotherapy for a brain tumor at Barrow.

The Kramer Family Foundation covered all of the expenses to participate in the race, Tracey said, “so that every dollar we raised we were able to donate to Barrow.”

Above: Team Barrow cyclists George Catalano, Troy Wilson, Yati Yadav, Don Bosch, Chris Wright, Mike Patterson, Jory Greenfield and Kyle Claffey with Sandi Kramer and Tracey Kramer. Below: Wright (middle) with crew members Mike Claffey and Preston Miller.

Benefactor briefs Barrow Magazine

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New 5K run honors beloved mother, wife The friends and family of Kathy Maxwell celebrated what would have been Kathy’s 64th birthday in a big way: They sponsored a first-time race called the Run FORE Cancer 5K on Sept. 22 at the Silverado Golf Course in Scottsdale. The benefit race attracted 262 participants and raised $51,000. The proceeds will be donated to St. Joseph’s Hospital and Barrow Neurological Institute in Kathy’s memory.

Kathy was a long-time supporter of Barrow Neurological Institute. Her husband, Roger, has been instrumental in the ongoing success of Lou Grubb Friends Fore Golf.

“We will be having the event again next year around the same time,” said Jennifer Crane, Kathy and Roger’s daughter. “We are still finalizing the date, and it will be posted on our website soon (www.startlinerac- Roger and Kathy Maxwell ing.com).”

Kathy was diagnosed with spindle cell carcinoma in 2009. Over the next three years, she underwent surgery, chemotherapy and radiation, but the treatment failed to control the cancer, and it spread to her spine. In December 2012, Kathy passed on surrounded by loved ones.

Fiesta Bowl Charities funds video game aimed at reducing concussions among children

An interactive video game designed to teach children about concussions has been introduced by Barrow Neurological Institute, the Interscholastic Association (AIA) and the Arizona Cardinals. Barrow Brain Ball teaches children ages 8 to 12 how to safely avoid collisions with other players. It was funded through a grant from Fiesta Bowl Charities to Barrow Neurological Foundation. The game—the first of its kind in the nation—is free and can be downloaded on Android phones and will soon be available for download on the iPhone.

“We have developed concussion education for high school students, but until now there’s been minimal education available to youth athletes,” says Javier Cárdenas, director of BRAINS (Barrow Resource for Acquired Injury to the Nervous System). “Barrow Brain Ball is an innovative way for us to start teaching children throughout the U.S. about concussion at an early age. We want them to learn how to play safe when they’re young.”

Donors fund 3D in Goldman Auditorium A major upgrade to the Goldman Auditorium—generously funded by Karl and Stevie Eller—is revolutionizing medical education at Barrow Neurological Institute.

The upgrade added 3D technology and high-definition screens to the teaching auditorium, which hosts many educational sessions for Barrow attendings and residents.

Our next magazine will include an article about this amazing technology.

Stay tuned.

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Barrow Magazine Benefactor briefs

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Five benefactors honored at annual dinner

Renee and Bob Parsons with Muhammad Ali; Pat Goldman; Jean and Jim Meenaghan

Several benefactors of Barrow Neurological Foundation and St. Joseph’s Foundation were honored at the annual Philanthropy Leadership Awards dinner, sponsored by the Greater Arizona Chapter of the Association of Fundraising Professionals on Nov. 13.

Bob and Renee Parsons received the Outstanding Philanthropist of the Year award. They were nominated for the award by Barrow Neurological Foundation, UMOM New Day Centers, Southwest Center for HIV/Aids and the Make-A-Wish Foundation. The Parsons’ generous donations to the Muhammad Ali Parkinson Center at Barrow Neurological Institute have supported fellowship training at the center.

Pat Goldman received a Spirit of Philanthropy Award. Goldman has contributed to Barrow Neurological Foundation for more than 40 years. She served as chairman of the Barrow Women’s Board, led a St. Joseph’s fundraising campaign in the 1980s and has given to many projects, including the original construction and recent renovation of the Goldman Auditorium.

Jean and Jim Meenaghan received a Spirit of Philanthropy award. The Meenaghans provided seed funding that enabled St. Joseph’s Hospital to partner with the University of Arizona’s College of Medicine in establishing Phoenix’s first Valley Fever Center. The center opened more than one year ago and is now set to expand its scope of services for patients with “Arizona’s disease,” one that affects nearly 16,000 people annually. Jean is a long-time member of the Women’s Board of Barrow Neurological Foundation.

Barrow Neurological Foundation Board of Trustees adds three members Three new members have been elected to the Barrow Neurological Foundation Board of Trustees: Dan L. Grubb built a successful and innovative career in the automotive industry. He was president of Lou Grubb Chevrolet, Toyota of Poway and Poway Nissan in California in the early 1980s. When the Grubb dealerships were purchased by AutoNation in 1997, he joined the company as vice president of the southwest district. He currently is a partner in three dealerships, Rancho Santa Margarita Honda, Santa Barbara Auto Group and John Elway’s Crown Toyota.

William Langer, Jr. started his career at Equifax, Inc., an international information-reporting firm where he held various field and senior corporate positions in operations, sales and marketing. In 1982 he founded Langer Companies in New York to provide information and technology support for the commercial insurance industry. In 2000 Langer Companies relocated to Phoenix, where the company focuses on acquiring and developing real estate.

Jerry Worsham, Jr. is an attorney with Ridenour, Hienton & Lewis where he has an extensive practice in envi-

ronmental law, real estate law, corporate law and commercial litigation. He is a graduate of Cornell and received an MBA from Pepperdine University and a JD from University of Denver. He is a recognized specialist in the field of environmental law by the New Mexico Board of Legal Specialization and is a member of the State Bar of Arizona, New Mexico State Bar, Texas State Bar, District of Columbia Bar, American Bar Association and the Maricopa County Bar Association.

Benefactor briefs Barrow Magazine

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News Barrow receives $4-million NIH grant to study post-aneurysm injury In an effort to lower medical costs and improve patient recovery, scientists will attempt to identify a genetic braininjury signal under a $4-million, five-year federal grant to Barrow Neurological Institute, Phoenix Children’s Hospital and the Translational Genomics Research Institute (TGen).

This signal, or biomarker—a molecule of RNA, the body’s DNA genetic messenger—could help identify patients most at risk for two secondary brain conditions after a brain injury: • Subarachnoid hemorrhage.

• Brain aneurysm, an abnormal bulge in an artery wall.

Identification of this biomarker could lead to faster diagnosis and intervention.

“We hope this study will lead to less injury, less testing and cost, and shorter stays in the hospital,” said Yashar Kalani, MD, PhD, a Barrow neurosurgery resident and one of the study’s principal investigators.

Barrow will collect daily spinal fluid samples from patients with ruptured aneurysms, and TGen will analyze the samples to look for changes in RNA levels. These changes might identify patients at risk of vasospasm.

Barrow nurse receives prestigious honor Virginia Prendergast, PhD, RN, ANP-C, GNPRN-BC, CNRN, was inducted as a fellow in the American Academy of Nursing during the group’s 40th annual meeting in October. The Barrow nurse was one of 172 nurse leaders who received the honor.

“Selection for fellowship in the academy is one of the most prestigious honors in the field of nursing,” said academy president Joanne Disch, PhD, RN, FAAN. Selection criteria include evidence of significant contributions to nursing and healthcare, and sponsorship by two current academy fellows. Applicants are reviewed by a panel comprised of elected and appointed fellows.

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Barrow Magazine News

RNAs are cell molecules that help create proteins.

“We know RNAs have additional functions, as well. If an injury happens somewhere in the body, RNAs can message the rest of the body about the injury,” said TGen’s Kendall Van Keuren-Jensen, PhD, a principal investigator in the study, which is funded by the National Institutes of Health.

This type of study is possible because of improvements in optics and computer speed. While it took 13 years and $2.7 billion to spell out the first human genome, such sequencing can now be done in days and for less than $5,000.

Only half of patients with brain-aneurysm ruptures survive, and those who do often are severely disabled. In the 10 days after such ruptures, blood vessels narrow, leading to loss of oxygen, strokes and brain damage.

“If we knew what is happening during this period, we might be able to intervene and prevent the secondary injury,” Dr. Kalani said.

Students develop cancer medicine at camp Twenty-four Valley students, ages 12 to 15, participated in a week-long Arizona Science Center camp at Barrow in July to learn about biotechnology.

Based on a scenario given to them, the students worked in teams to extract DNA and genetically modify bacteria into a simulated cancer medicine. They learned to design, produce and market the medicine they developed.

In addition, the students toured Barrow and observed a surgery. At the end of the week, the students presented their findings to their families and hospital staff.

Barrow brain tumor researcher Adrienne Scheck, PhD, led the science camp.

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Neurosurgeon’s letter to the editor morphs into 212-page book Frustrated with the state of healthcare, Barrow neurosurgeon Kris Smith, MD, decided to write a letter to the editor to the Wall Street Journal. Although the letter was never published, the exercise launched Dr. Smith into a writing project that lasted six years and produced a 212-page book titled It’s Not Brain Surgery: A Neurosurgeon’s Prescription for Health Care Reform.

In his recently published book, Dr. Smith draws from years of experience to analyze the problems with America’s healthcare system—how the system dis-

courages individual responsibility for healthcare and why the United States spends more on healthcare than any other country and yet measures lower on healthcare statistics than many advanced nations.

“We should be able to do what we do much less expensively,” Dr. Smith says.

He illustrates his opinions with personal experiences and patient encounters, and offers his ideas for making the system more efficient, accessible and affordable.

Barrow specialists serve on the sidelines Barrow Neurological Institute has been selected by the National Football League (NFL) to provide additional neurological medical services during all home Arizona Cardinal football games this season. The appointment is part of a new NFL guideline that places independent medical specialists on the sidelines at all games to reduce the number of head injuries and address them earlier during games.

Nicholas Theodore, MD, Javier Cardenas, MD, and Taro Kaibara, MD, are present on the sidelines at every game in Phoenix to provide neurological specialty support to physicians of both teams. The Barrow doctors were selected for the NFL’s Unaffiliated Neurotrauma Consultant Program based on Barrow’s expertise in treating brain and spinal cord injuries, including concussion.

“By having more medical experts on the field, players will more quickly and effectively receive concussion evaluation and treatment,” says Dr. Theodore.

The Barrow specialists will examine players right after they return to the sidelines if they show concussion symptoms. If it’s determined a player has suffered a concussion, the Barrow physicians will discuss appropriate treatment.

“It’s important to quickly recognize and treat professional football players who have suffered a concussion so that they don’t immediately return to the game and put themselves at risk for a more serious brain injury,” says Dr. Cardenas.

“Concussion needs to be taken seriously, and we’re happy the NFL has initiated these new guidelines to help protect their athletes from brain injury,” says Dr. Kaibara.

Two years ago, Barrow, the Arizona Interscholastic Association (AIA) and the Arizona Cardinals created Barrow Brainbook, the nation’s first mandated concussion education and test for high school athletes.

Last year, Barrow implemented the Barrow Concussion Network, which includes voluntary pre-injury testing, post-injury medical resources to all AIA schools and groundbreaking research on injured Arizona students. Just last month, Barrow introduced a new educational video game for children called Barrow Brain Ball.

The video game, which was made possible by a grant from Fiesta Bowl Charities, is designed to teach children how to safely avoid collisions in football.

Javier Cardenas, MD, and Nicholas Theodore, MD

News Barrow Magazine

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Arizona’s newest millionaire Grand prize winner says Health & Wealth Raffle is “all about giving” ■ Surprise resident Katherine Oetken got the surprise of her life on Nov. 8 when she learned that she is “Arizona’s Newest Millionaire.”

Oetken—who has played in nearly every Raffle since the Health & Wealth Raffle debuted more than 10 years ago—came to the raffle prize announcement knowing she had won one of three grand prizes but never thinking it would be the big $1-million Grand Prize.

That’s because Oetken believes that the raffle “is all about giving” to research at St. Joseph’s Hospital and Barrow Neurological Institute. “My sister died of esophageal cancer, and I have esophageal problems,” she said. “The research done here could help people like us someday.”

Still, winning $1 million felt pretty good. Oetken plans to use her unexpected windfall to pay off a few debts and perhaps move into a bigger house. “The rest of it is going into a savings account for retirement,” she said.

Oetken moved from Iowa to Arizona 10 years ago to care for her sister after she was diagnosed with cancer. She works for the City of Peoria.

The Second Grand Prize winner was Harry Sharrock, Sun City, who won $200,000. “It’s going to make retirement a little more comfortable,” said Sharrock, who plans to hang it up in January.

Also on the horizon for Sharrock: a 10-day trip to Ireland and a new mattress. “And there will be better Christmas presents this year for the nieces and nephews,” he said.

The Health & Wealth Raffle will be back in the spring with another chance to become “Arizona’s Next Millionaire.”

Now in its 10th year, the Health & Wealth Raffle has contributed more than $51 million to research, medical education and patient care at Barrow and St. Joseph’s. Most prizes and services to run the Raffle are purchased in Arizona, contributing to our state’s economy. ■

The Suns Gorilla; Terri Hoffman, director of the Health & Wealth Raffle; and Patty White, president and CEO of St. Joseph’s Hospital, congratulate Katherine Oetken and Robert Hite on her big $1million win. Below, Harry Sharrock won the $200,000 Second Grand Prize.

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Barrow Magazine Health & Wealth Raffle

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LOU

GRUBB

FRIENDSFOREGOLF raffle or LGFFG ad

Come roll the

with us!

In Celebration of Golf Gala & Tournament • May 1 & 2, 2014

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Year-end giving

Gifts, both large and small, make a big difference for Barrow

by Alan Knobloch Director, Major Gifts and Planned Giving Barrow Neurological Foundation St. Joseph’s Foundation

“As the year winds down and you think about your own giving, here are some simple and wise ways to help deliver the great healthcare you have come to expect.”

■ Thank you for your past contributions to Barrow Neurological Foundation.

As you can see throughout this magazine, there is a great amount of important work going on at Barrow. This only happens with the support of many people like yourself whose gifts…large or small … go to making it possible. Small gifts by check or credit card, combined with larger gifts by stock or other assets, provide crucial support for our research, education and world-class clinical programs.

As the year winds down and you think about your own giving, here are some simple and wise ways to help us deliver the great healthcare you have come to expect: Give a gift annuity - An additional source of lifetime income for you, your spouse or other significant persons.

- A potential increase in the income you are currently receiving from your investments.

- An immediate tax deduction.

- No capital gains tax due.

Donate an insurance policy - A gift credit and an immediate income tax deduction for the cash surrender value of the policy.

Make a bequest - Simplicity. Just a few sentences in your will or trust are all that is needed.

- Flexibility. Because you are not actually making a gift until after your lifetime, you can change your mind at any time.

- Versatility. You can make a gift of a specific amount or percentage or to a specific project or purpose.

Special opportunity - Make a tax-free gift from your IRA if you are 70½ or older.

- Gift counts toward your annual required minimum distribution.

- Transfer generates neither taxable income nor a tax deduction.

- You don’t have to itemize to take advantage of this opportunity.

For more information on any of these options, please contact me at 602-4061025 or Alan.Knobloch@DignityHealth.org. You can also visit our website at https://www.planyourlegacy.stjosephs-phx.org/. ■

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Barrow Magazine Year-end giving

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