A magazine for the friends of Barrow Neurological Institute of St. Joseph’s Hospital and Medical Center
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Vol. 26, Iss. 1, 2014
barrow Gene discovery
Fulton ALS Center contributes to discovery of mutation that causes some cases of familial ALS
Ice Bucket Challenge Barrow doctors raise money for ALS
Opening thoughts Imagine being Julie Stendal. For more than six years, the young Norwegian woman lived with the knowledge that a rare vascular malformation on her spine could rupture at any moment with devastating consequences—and there was absolutely nothing she could do. Julie, a nurse, had an extremely difficult arteriovenous malformation (AVM) that first hemorrhaged in 2008. The doctors who discovered it said removing it was too risky and sent Julie home. Early this year, the AVM ruptured again, putting Julie at risk for paralysis. This time, doctors in Oslo contacted the one place they believed might be able to help—Barrow Neurological Institute. In April, Julie flew to Phoenix for a surgery that was developed and pioneered here at Barrow. The surgery was successful, and Julie was released on Easter to begin her renewed life. Stories like Julie’s are not rare at Barrow. We are able to treat the most difficult brain and spine disorders because of ongoing and significant investments in research, patient care and medical education—investments that you make possible through your gifts to Barrow Neurological Foundation. This issue of Barrow includes many examples of how benefactors are contributing to the work of Barrow Neurological Institute. You’ll read about new 3D technology in the Goldman Auditorium, a first-ever oral health symposium for nurses, a new center aimed at preventing falls among Parkinson’s patients, a program for homeless, domestic violence victims with brain injuries and a research project designed to discover better brain-tumor treatments. Each came about through philanthropy. Please take a moment to consider how your generosity touches people like Julie—and the other patients whose stories are told within these pages. Thank you for your continued commitment to Barrow Neurological Institute.
Sincerely,
Robert F. Spetzler, MD Director, Barrow Neurological Institute
Brian R. Mortenson President and CEO Barrow Neurological Foundation
P.S. Please consider making a gift to Barrow Neurological Foundation by using the enclosed giving envelope. We are grateful for your ongoing support.
On our cover: Dr. Robert Bowser and PhD student Ashley Boehringer are part of an international team of researchers that discovered a new gene mutation for familial ALS. See story on page 4.
Contents
Fulton ALS Center part of team that identifies Matrin 3 mutation as cause of familial ALS
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ALS team conquers Ice Bucket Challenge
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The power of 3D: Gift enhances neurosurgical education
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2014 Barrow Grand Ball: Women’s Board raises $2.44 million for Barrow
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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. 26, Issue 1, 2014
barrow
Off the street: 10 Homeless, domestic violence victims receive treatment for traumatic brain injuries
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Muhammad Ali Parkinson Center 12 grows to meet patient needs Celebrity Fight Night XX: 14 Event raises much-needed funds for Muhammad Ali Parkinson Center Nurse navigators: 16 Specially trained nurses steer brain tumor patients toward best treatment options
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Amazing medicine: Stories from 18 the files of Barrow Neurological Institute Benefactor briefs 23 Donors’ funding brings well-known 26 experts to nursing conference Cash, cars, vacations and more! 27 Health & Wealth Raffle awards 2,400 prizes News 28 Why your gift really matters 30 How to Reach Us | Barrow is published by Barrow Neurological Foundation. 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, Dignity Health 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.
Editor: Catherine Menor Catherine.Menor@DignityHealth.org Associate editor: Drew Whitney Art director/designer: Justin Detwiler Contributing writers: Sara Baird, Carmelle Malkovich and Melissa Morrison Printer: Panoramic Press
Photography: Brad Armstrong, Gary Armstrong, Jackie Mercandetti, Drew Whitney Robert F. Spetzler, MD Director Barrow Neurological Institute® Brian R. Mortenson President and CEO Barrow Neurological Foundation
Gene discovery Researchers at Fulton ALS Center are part of international team that identifies Matrin 3 mutations as cause of some cases of familial ALS
Dr. Robert Bowser directs research at the Gregory W. Fulton ALS and Neuromuscular Disorders Center and holds the John and Betty VanDenburgh Chair in Neuromuscular Disease, an endowed chair funded through Barrow Neurological Foundation.
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■ Barrow ALS researchers, led by Robert Bowser, PhD, are part of an international team that discovered a new gene mutation associated with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. The discovery that mutations in the Matrin 3 gene cause some cases of familial ALS is expected to open the door to new therapies for this neurodegenerative disease, which kills motor neurons and causes weakness and paralysis, eventually leading to death. The research was reported in the June edition of the prestigious professional journal Nature Neuroscience. Ashley Boehringer, a second-year student in the Barrow-Arizona State University PhD program, was one of three co-first authors of the article about the discovery. “It’s a new gene associated with ALS, and by studying what that gene does, we hope to gain more insight into the mechanisms of the disease,” says Bowser, who is the research director and the John and Betty VanDenburgh Chair in Neuromuscular Disease at the Gregory W. Fulton ALS and Neuromuscular Disorders Center at Barrow. The Fulton ALS Center was one of four major participants in the research. Other investigators were located at the Cleveland Clinic, National Institutes of Health and University of Turin in Italy. The group studied four families from various parts of the world—two
from the United States, one from the United Kingdom and one from Italy— and confirmed that the mutant Matrin 3 gene is the common denominator for all individuals with inherited ALS in those families. According to Bowser, about 10-15 percent of people with ALS have the inherited form of the disease. The gene mutations that cause about 60 percent of those cases have been discovered, leaving about 40 percent still unknown. The discovery that mutations in the Matrin 3 gene cause some cases of familial ALS provides another piece of the ALS puzzle. The Matrin 3 gene joins over 20 other genes associated with familial ALS. The first of those genes, SOD1, was identified in the early 1990s before the human genome was mapped. “Every gene we find takes us a step closer to uncovering why people develop this dreaded disease,” Bowser says. Bowser explains that Matrin 3 functions to help regulate RNA metabolism, a key process that regulates how proteins are made in every cell of our body. ALS researchers are working to determine which pathways are involved in causing the death of motor neurons in ALS. Understanding this process will lead to new therapeutic avenues and new drug targets, Bowser adds. Going forward, Barrow’s research into the Matrin 3 mutation will focus on understanding the protein’s normal function and what is altered during
ALS. This research will form the basis of Boehringer’s doctoral dissertation, a project that the 24-year-old woman from Ahwatukee Foothills expects will take another three years to complete. “ALS is a disease that has no effective treatment,” says Boehringer. “It’s a research area that is wide open to discovery. It is a great opportunity for me.” ■
Philanthropy built the new Gregory W. Fulton ALS and Neuromuscular Disorders Center and is critical to its future. To learn how you can contribute to research, medical education and clinical care at the center, contact Barrow Neurological Foundation at 602-406-3041.
Left, Ashley Boehringer, a second-year PhD student, will conduct research on the Matrin 3 mutation for her doctoral dissertation. Right, among the staff in Dr. Bowser's laboratory are Mahlon Collins and Jiyan An.
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Challenge accepted! Fulton ALS team conquers the Ice Bucket Challenge ■ Led by Shafeeq Ladha, MD, and Robert Bowser, PhD, nearly 30 Barrow doctors, researchers, residents and staff collectively accepted the ALS Ice Bucket Challenge on Aug. 15 and, in turn, dared the Arizona Diamondbacks, VIPs, residents, medical students and donors to join the ALS awareness campaign. Ladha is the clinical director and Bowser, the research direc-
tor of the Gregory W. Fulton ALS and Neuromuscular Disorders Center, which opened last year at Barrow. The Ice Bucket Challenge was created by an ALS patient in Boston to bring attention to the disease. Within weeks, thousands of people across the country had jumped on the bandwagon, dumping buckets of ice on their heads and raising millions for ALS
charities. Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a fatal neurodegenerative disease that kills nerve cells, causing weakness and paralysis. To view a video of Barrow’s ALS Ice Bucket Challenge, visit www.SupportBarrow.org/ice-bucket-challenge. Donations may be made online at SupportBarrow.org/DonateALS. ■
Dr. Shafeeq Ladha was one of the participants in the Ice Bucket Challenge at Barrow.
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by Drew Whitney
The power of 3D Donors' gift adds new dimension to neurosurgical education ■ When James Cameron set out to make Avatar, he consciously chose to present it in 3D, inviting moviegoers to experience life on planet Pandora as close to “real” as possible. Similarly, when Robert Spetzler, MD, first proposed adding 3D capabilities to the Goldman Auditorium at Barrow Neurological Institute, he knew the technology would maximize the educational experience for his students, enabling them to feel they were right alongside him as he performed intricate surgical procedures. As the director of the institute, Spetzler was delighted that longtime philanthropists Karl and Stevie Eller shared his vision and generously gave $750,000 to Barrow Neurological Foundation for the purpose of enhancing the Goldman Auditorium for 3D viewing. “Our mission to teach the next generation of neurosurgeons has been greatly enhanced by the introduction of high-definition 3D systems into our operating rooms,” says Spetzler.
Just like being there “It is an honor to support the advancement of medical science and to partner with Barrow to educate young neurosurgeons using 3D technology,” says Karl Eller. “We are proud to be able to assist this world-class institute in providing medical students with this unique experience.” The new 3D technology permits up to 200 students seated in the Goldman Auditorium to view surgeries with unparalleled authenticity just by putting on a special pair of 3D glass-
es. They can also listen along as the surgeon describes and explains procedures step-by-step in real time, pausing to answer students’ questions as necessary. “This is a one-of-kind system,” says Craig Carnell, a Barrow audiovisual specialist who assisted in the installation. “The infrastructure allows us to broadcast to the rest of the world if we want to.” In addition, videos of surgeries can be archived for viewing at a later date, maximizing the educational potential even more. The installation of the new technology required an electrical overhaul of the Goldman Auditorium, explains Carnell. Cables were upgraded, a 3D silver screen for stereoscopic high-definition imaging replaced the old screen, and a hightech projection system was installed. “We settled on the best broadcast equipment in each class and integrated them together,” says Gabe Arnn, multimedia analyst at Barrow, who conducted extensive research to identify the best components to meet Spetzler’s specifications. “We picked three companies and had them work together to suit our purposes.” “When surgical techniques are presented in two dimensions, like on the pages of a book, we may have difficulty interpreting the subtleties of surgical anatomy,” Dr. Spetzler says. “But when we see the brain in three dimensions (3D), the relationships of the many structures are much more readily appreciated. It is like the difference between seeing a picture of the Grand Canyon and actually hiking through it.” ■
The new 3D technology in the Goldman Auditorium reveals the subtleties of the brain's anatomy. "It is like the difference between seeing a picture of the Grand Canyon and actually hiking through it," says Dr. Robert Spetzler.
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The Barrow Grand Ball 2014 Women’s Board raises $2.44 million for Barrow at annual gala Right, Kathleen Lang (left) and Robyn Lee (right) chaired Barrow Grand Ball 2014. Shän Francis (center) was the chairman of the Women’s Board during Fiscal Year 2014. Below, this year’s ball featured a “Downton Abbey” theme.
■ The Arizona Biltmore provided the perfect backdrop for the “Downton Abbey”-themed 2014 Barrow Grand Ball on January 18. The black-tie event, presented by the Women’s Board of Barrow Neurological Foundation, attracted approximately 350 attendees and raised $2.44 million for Barrow Neurological Institute. “The success of the 2014 Barrow Grand Ball can be attributed to the wonderful Women’s Board of Barrow Neurological Foundation under the leadership of Shän Francis,” said Kathleen Lang, who co-chaired the event with Robyn Lee. “We are also thankful to our Ball advisor, Mary Ellen McKee, for her invaluable guidance.” “We are very proud of and grateful to our community for their support and for realizing what a fine treasure Barrow truly is,” added Lee. Approximately $615,000 of the monies raised at the 2014 event will be directed to the Barrow Brain Tumor Research Center, selected by the Women’s Board as this year’s Special
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Project for fundraising. BBTRC is dedicated to discovering causes and cures for brain tumors and to offering an experimental therapy option to every Barrow patient diagnosed with a brain tumor. In keeping with the “Downton Abbey” theme, guests sipped fine French wines while savoring Beef Wellington with hollandaise sauce, braised fennel and asparagus, pomme purée and warm dark-chocolate bread pudding. The attendee list included a long list of Barrow benefactors as well as many of the institute’s world-renowned physicians, including Director Robert Spetzler, MD. Founded in 1965, the Women’s Board has evolved into one of the most successful fundraising organizations in the state. Over the years, it has raised more than $46 million for Barrow through the annual ball. The 2015 Barrow Grand Ball is scheduled for January 17 and will commemorate the 50th anniversary of the Women’s Board. ■
Major gifts, Barrow Grand Ball 2014 WOMEN’S BOARD PROJECT Barrow Brain Tumor Research Center (BBTRC)
CHIEF OF STAFF 1
Mr. and Mrs. David Glew ~ Neurosurgery Research The Knievel Family ~ ALS Clinical Care and Programs Mr. and Mrs. Dana Moore, Liberty Buick ~ BBTRC Mr. and Mrs. F. Francis Najafi, Pivotal Foundation ~ BBTRC Mr. and Mrs. Millard Seldin, Beverly and Millard Seldin Family ~ Disc and Spinal Regeneration Lab Pat Petznick and Beverly Stewart ~ BBTRC The Rob and Melani Walton Fund of the Walton Family Foundation ~ Outpatient Neuro Rehabilitation Gym Mr. and Mrs. Michael F. Ziegler ~ Ziegler Suite
BARROW DEAN 2
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Anonymous ~ Neurosurgery Research Mr. and Mrs. Bennett Dorrance ~ BBTRC Mr. and Mrs. Karl Eller ~ Neurosurgery Research Mr. and Mrs. Bruce T. Halle ~ BBTRC Hanley Family Charitable Fund ~ Pain Alleviation in Pancreatic Cancer Patients Mr. and Mrs. Robert C. Hobbs, Sr. ~ Karen and Robert Hobbs and the Hobbs Family Grant for Multiple Sclerosis Research The Lodestar Foundation ~ Barrow-ASU Brain Tumor Research Collaboration Dr. and Mrs. Volker K.H. Sonntag ~ Neurosurgical Nursing Education Dr. and Mrs. Robert F. Spetzler ~ Neurosurgery Research Teets Family Foundation ~ BBTRC, dedicated to Randall Porter, MD, and his team
WHITE COAT FELLOW
4 1 - Dr. Nader Sanai (director of the Barrow Brain Tumor Research Center) and Mrs. Jessie Sanai; 2 - Phil and Nita Francis, and Bennett and Jacquie Dorrance; 3 - Ray and Amy Thurston. 4 - Steve and Shelby Butterfield, and Carole and Arte Moreno.
Barrow Neurological Institute ~ General Research Fund Warren and Mary Jane Crist Foundation ~ Nurse Expert Program Mr. and Mrs. Geoffrey H. Edmunds ~ Barrow Center for Neuromodulation Patricia Goldman ~ BBTRC Mrs. Evelyn Grubb ~ BBTRC, in honor of James P. Simmons Mr. and Mrs. Gary J. Hewson ~ BBTRC Mr. and Mrs. Robert H. McKee ~ BBTRC Mr. and Mrs. Arte R. Moreno ~ A New Hope for Alzheimer’s Mr. and Mrs. Scott M. Spangler ~ Neurosurgery Research St. Joseph's Hospital and Medical Center ~ General Research Fund Dr. and Mrs. Nicholas Theodore ~ Spinal Surgery Research Mrs. Jane Wallace Thorne ~ BBTRC Mr. and Mrs. Ray R. Thurston ~ BBTRC Mr. and Mrs. Larry L. Van Tuyl ~ Neuroscience Research Mr. and Mrs. Michael L. Watts ~ Barrow Center for Neuromodulation
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by Drew Whitney
Off the street
Homeless, domestic violence victims receive treatment for traumatic brain injuries ■ Meeting face-to-face with homeless people in downtown Phoenix was eye-opening for Ashley Bridwell, who discovered that many of those living on the streets were also living with traumatic brain injury incurred through domestic violence. This revelation prompted Bridwell to take action. Two years later, she co-directs a life-changing program that offers comprehensive care at Barrow Neurological Institute for homeless women and children with brain injuries.
According to the Centers for Disease Control and Prevention, 1 in 4 women experiences domestic violence at some point in her life, and approximately 1.3 million women are physically assaulted by an intimate partner each year.
A call to action Bridwell, a social worker for the Barrow Concussion and Traumatic Brain Injury Center, provides specialized therapy for post-concussion patients on a daily basis. But it wasn’t until her husband, Brad, invited her to participate in Project H3: Home, Health and Hope in 2012 that she made a three-way link between homelessness, domestic violence and brain injury, pinpointing a need that had been long overlooked. Spearheaded by the Arizona Coalition to End Homelessness, Project H3 is an annual campaign that aims to find homes for the most chronically homeless, medically vulnerable individuals. Two years ago, Bridwell and fellow volunteers hit the streets of downtown Phoenix in the wee hours of the morning for three days straight, asking the homeless about their medical history. Of the 300 face-to-face surveys conducted that year, onequarter of the individuals also suffered from brain injury. “It shocked me because I never considered the relationship between traumatic brain injury, homelessness and domestic violence before,” says Bridwell.
Community of care Bridwell returned to St. Joseph’s, haunted by stories she’d heard on the street and determined to make a difference. “I researched peer review literature and talked with anyone who would listen,” she says. Fortunately, Javier Cárdenas, MD, neurologist at the Barrow Concussion and Traumatic Brain Injury Center, heard the message loud and clear, and together they set out to work on a solution. First, Cárdenas secured a $100,000 grant from the Diane and Bruce Halle Foundation. Second, Bridwell and Cárdenas developed relationships with area homeless/domestic violence shelters and the Brain Injury Alliance of Arizona. Bridwell met with social workers and case managers, educating them on traumatic brain injury and working collaboratively to streamline a process for identifying potential
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patients. Last and most important of all, upon referral of the shelter, victims of domestic violence who had screened positive for brain injury were referred to Barrow for evaluation.
A brighter, safer future Today, hundreds of homeless women from the Phoenix community have benefited from the domestic violence program at Barrow, where they receive diagnostics, surgery, physical therapy, neuropsychology, speech therapy and injury prevention education—all free of charge. Of equal importance, the program assists them in finding subsidized housing to keep them out of harm’s way in the future. “We are serving a clearly veiled and hidden community in need,” says Cárdenas. “In this clinic, we are seeing multimillion-dollar professional athletes and domestic-violence brain injury patients within 30 Javier Cárdenas, MD minutes of each other, and they are all receiving the exact same level of care.” Earlier this year, Bridwell and Cárdenas accepted a gift of $100,000 made on behalf of the Board of Visitors to continue funding the program. They are hopeful other donations will follow. ■
Humankindness: Paying it forward With the help of Javier Cárdenas, MD, a Barrow neurologist and brain injury expert, social worker Ashley Bridwell developed a program at the Concussion and Traumatic Brain Injury Center at Barrow Neurological Institute to provide multidisciplinary care for homeless, domestic violence victims suffering from traumatic brain injuries. Bridwell has presented her case—linking homelessness, domestic violence and brain injury—to more than two dozen local and national organizations. It is her mission to educate others about the problem and rehabilitate those afflicted. Her passion for this cause is a result of personal experience dealing with a neurological illness. Diagnosed with a brain tumor in 1999 as a college sophomore, Bridwell underwent three surgeries and endured numerous complications before she made a full recovery. She counts her blessings daily and recognizes others are not as fortunate as she. “I was lucky to have had an incredible network of family and friends supporting me throughout my experience,” Bridwell says. “People were there for me when I needed them, and I had insurance. “Every day I am grateful,” she continues, “but it hurts to know there are people suffering with brain injuries who have nothing, nothing. There’s something very motivating to me to try and help them get even a piece of what I had.” Above, Ashley Bridwell developed a program at Barrow to provide care for women like Latasha, a homeless woman who has a traumatic brain injury as a result of domestic violence. The program is part of the Barrow Concussion and Traumatic Brain Injury Center. Left, the Board of Visitors granted the program $100,000 this year (Dr. Javier Cárdenas; Bridwell; Diane Rousseau and Kim Humphrey of the Board of Visitors; Greg Anderson, Barrow Neurological Foundation Board of Trustees; and Brian Mortenson, president and CEO of Barrow Neurological Foundation).
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by Drew Whitney
Donors fund major expansion
The new Muhammad Ali Parkinson Center is twice as large as the previous facility and four times as large as the original facility. Contributions from the Celebrity Fight Night Foundation and other donors made the move into the current space in 2009 possible as well as a major expansion this year.
Muhammad Ali Parkinson Center grows to meet patient needs ■ Nearly 10,000 patients cross the threshold of the Muhammad Ali Parkinson Center each year, but that number is expected to rise with the completion of a $5-million expansion project that has doubled the size of the center. The game-changing expansion was possible because of support from the Celebrity Fight Night Foundation and other generous benefactors. Patients and families appreciate the spacious new facility—and the center’s wide breadth of services. At the heart of the expansion is a large gym and activities area where patients attend support programs and exercise classes in everything from tai chi and yoga to dance and pole walking. The center treats those afflicted with Parkinson’s disease and other movement disorders, with the goal of enhancing the quality of their lives.
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According to the National Parkinson’s Disease Foundation, about one million people in the United States have Parkinson’s, with nearly 60,000 new cases diagnosed each year. Without a cure in sight, that number is expected to increase substantially with the country’s aging population, says Medical Director Abraham Lieberman, MD. The facility is recognized as a National Parkinson Foundation Center of Excellence. It is the home of the world’s leading program for deep brain stimulation, a complex surgical treatment that uses a “brain pacemaker” to manage the symptoms of movement disorders, including Parkinson’s disease, essential tremor and dystonia. The recent expansion received national recognition when AARP published an article announcing the completion of the project in its June bulletin.
“People think celebrities get better care, but we want the standard of care here to be the same for everybody,” says Lonnie Ali in the AARP article. Ali’s husband, world-renowned heavyweight boxer Muhammad Ali, was diagnosed with Parkinson’s disease 20 years ago. The couple works closely with the center to broaden services and assure the community’s needs are being met through outreach programs. “Muhammad is ‘the Greatest,’ and the Muhammad Ali Parkinson Center truly reflects his vision,” says Lieberman. ■
Muhammad Ali Parkinson Center Established in 1997, the Muhammad Ali Parkinson Center recently completed a $5-million renovation project that doubled the facility to 26,460 square feet. Located on the campus of Dignity Health St. Joseph’s Hospital and Medical Center in Phoenix, the center attracts patients worldwide and is known for top-quality patient care, medical education and translational research. As one of the most comprehensive facilities of its kind, the center features the following: • Rehabilitation gym • 30 exam rooms • Balance and gait lab • Tilt room to evaluate and treat orthostatic hypotension patients • Clinical research areas • Adapted restrooms • Exercise and education space • Spacious waiting room • Three reception areas • Two conference rooms. This latest expansion is the second major facility improvement made possible by contributions to Barrow Neurological Foundation.
Among the many services provided by the Muhammad Ali Parkinson Center are yoga (left) and physical therapy (below).
Parsons Foundation gives $1 million for fall prevention center at Barrow The Bob & Renee Parsons Foundation has awarded a $1-million grant to Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center to create a new center dedicated to researching and preventing falls. In addition, the Parsons announced another gift of $1 million for the Muhammad Ali Parkinson Center at Celebrity Fight Night XX in April. With fall-associated medical costs approaching $40 billion a year in the United States, the new Parsons Fall Research & Prevention Center will provide a much-needed service to the local community. “Our goal is to establish a way to systematically evaluate the neurological impetus for falls; identify and interpret patterns and triggers; and develop predictive mechanisms to lessen the risk of future episodes,” says Abraham Lieberman, MD, medical director of the Muhammad Ali Parkinson Center and Movement Disorders Clinic, which will house the new center. Although all populations are at risk for falls, the grant will allow the facility to offer programming specifically for patients with Parkinson’s disease. “Approximately one out of two people over the age of 65 falls each year, but for those with Parkinson’s, it’s closer to two out of three,” says Lieberman. Bob and Renee Parsons are longtime supporters of the Muhammad Ali Parkinson Center, which features a gallery in their name to honor the couple’s legacy of giving. Stay tuned for more details about the Parsons Fall Research & Prevention Center in an upcoming issue of the magazine. In the meantime, more information about the center’s services is available by calling 602-406-4921.
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by Drew Whitney
Celebrity Fight Night XX Event raises much-needed funds for Muhammad Ali Parkinson Center
Michael Bublé closes the show with “It’s a Beautiful Day.”
■ Barrow Neurological Foundation has received $1.2 million for the Muhammad Ali Parkinson Center from Celebrity Fight Night XX. Dozens of celebrities attended and entertained at the gala, which was held April 12 at the JW Marriott Desert Ridge Resort and Spa in Phoenix. During the event, the Bob & Renee Parsons Foundation announced an additional gift of $1 million for the Muhammad Ali Parkinson Center. The Celebrity Fight Night Foundation has been contributing to the Muhammad Ali Parkinson Center since 1996, when Abraham Lieberman, MD, director of the center, and Jimmy Walker, founder of Celebrity Fight Night, convinced Muhammad Ali to become involved in the annual fundraiser. Since then, the Celebrity Fight Night Foundation has contributed more than $24
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million to Barrow Neurological Foundation to benefit the Muhammad Ali Parkinson Center. “Muhammad Ali’s involvement took Celebrity Fight Night to the next level,” says Sean Currie, executive director of the Celebrity Fight Night Foundation. “That was the beginning of a great partnership with Barrow. It has been very rewarding to contribute to the growth of the Muhammad Ali Parkinson Center through the years.” Funds donated by Celebrity Fight Night have supported community outreach, education, exercise classes, and patient and family support services at the center, and have made possible two major expansions since 2008, including one just finished this year (see story previous page). The Muhammad Ali Parkinson Center is now four times
larger than it was in 2008, enabling it to care for more patients and provide more robust services. “Our overriding goal has always been to provide patients and their families with the same help we have received so they can live full and productive lives,” said Muhammad Ali’s wife, Lonnie, while visiting the center recently. “This major expansion gives patients comprehensive access to renowned medical care, education, recreational therapies and support programs. The expanded Muhammad Ali Parkinson Center demonstrates that we all are continuing the fight.” ■
Thank you, Celebrity Fight Night! Founded in 1994 by Jimmy Walker, Celebrity Fight Night has raised funds contributing to the recently completed expansion of the Muhammad Ali Parkinson Center and to outreach programs supporting patients and their families. For more details about the center and its major renovation, see "Donors fund major expansion," page 12.
Photos, clockwise from top left: Renee and Bob Parsons with Melissa Peterman; Volanda and David Foster; The Band Perry – Neil, Kimberly and Reid Perry; Ronnie Dunn; Billy Crystal, Joe Toree and Robert De Niro; John Paul DeJoria; Reba McEntire and Kenny Rogers.
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by Melissa Frederick Morrison
Nurse navigators
Specially trained nurses steer brain tumor patients toward best treatment options ■ You have brain cancer. When someone hears those words, life as they know it is changed forever. They now inhabit a new world of hospitalizations, clinic appointments, chemo and radiation sessions, MRIs and, maybe, clinical trials. And they must negotiate its complexities amid the physical and emotional fallout of a cancer diagnosis.
A compassionate ear Cancer treatment teams, such as those at the Barrow Brain Tumor Center, recognize that these patients—and their families—can benefit greatly from guidance provided by nurse navigators. Nurse navigators are professionally trained to help patients deal “They explained everything with all the complexities they face, they keep that needed to be done. ensuring crucial appointments or participate They were just really in beneficial clinical trials. They also straightforward and made provide a compassionate listening ear us feel very confident.” when doctors are hard to reach. The American Bob Holtzen Cancer Society identified the need for nurse navigators at the turn of this century when its president realized that many patients were dying because they were not being diagnosed early enough. Even when they were, the complexities of cancer treatment meant many were missing out on crucial interventions.
Gracia Nicolaescu, RN, is the Brain Tumor Center’s nurse navigator, one of several at Barrow who help patients with complex medical conditions. Neurosurgeons at Barrow operate on about 1,300 patients a year. Nicolaescu usually calls the patient and family when they’re first home from the hospital after the initial tumor-removing surgery. She makes sure they know which doctors they need to see next and when to schedule the appointment. “I usually like to touch base with them after discharge to see if they have any questions, so they don’t feel completely lost,” says Nicolaescu, who was a Barrow neurosurgical OR nurse previously. “I’m checking in to make sure they’re on the right path.” She also distributes the Barrow Brain Tumor Handbook, which describes types of tumors, their treatment and side effects, and includes a list of clinical trials and a section for caregivers and survivors. For Bob Holtzen, Nicolaescu was a lifeline. His wife, Debra, was diagnosed with an aggressive form of malignant brain cancer called a glioblastoma multiforme (GBM) last fall. Their Albuquerque physician referred them to Barrow, where Debra, 56, underwent surgery to debulk the tumor in October.
Optimal outcomes Neurosurgeon Nader Sanai, MD, brought the concept to the Barrow Brain Tumor Center when he became its director in 2009. “Cancer care these days involves multiple specialists, multiple clinics, multiple treatments,” he says. “Sometimes patients and their families are overwhelmed and not able to keep up. Sometimes different specialists don’t communicate with each other. Sometimes things just get disorganized on the hospital side. “When patients fall through the cracks and families get confused, it doesn’t lead to optimal outcomes.”
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Bob and Debra Holtzen are grateful for the guidance provided by nurse navigator Gracia Nicolaescu.
Gracia Nicolaescu, RN, works as a nurse navigator at the Barrow Brain Tumor Center, which is directed by Dr. Nader Sanai. She helps patients with the complexities of brain tumor treatment.
Before the couple returned to New Mexico, they met with Sanai and Nicolaescu. “They explained everything that needed to be done. They were just really straightforward and made us feel very confident,” says Bob. “Just trying to keep everything straight, it’s been really overwhelming,” he adds. “It’s terminal brain cancer. I had never heard of it. We didn’t really know anything.”
Long-distance help Debra received her post-operative chemotherapy and radiation treatments in New Mexico. Bob kept Nicolaescu updated by phone. When Debra’s New Mexico physicians determined she needed further chemo, Nicolaescu intervened. “We were going to Hawaii in May, because you have to do these kinds of things,” he says. “I told Gracia, she told Sanai, and he said he felt with this other treatment she [Debra] wouldn’t feel like going to Hawaii.” So instead of more chemo, the Holtzens headed back for another debulking surgery in the spring. Afterward, Debra felt good enough for the trip
to Hawaii, where she and Bob renewed their wedding vows. Some cancer patients qualify for clinical trials. Sanai is also the director of the Barrow Brain Tumor Research Center, which is seeking more effective treatments for brain cancers, with the ultimate goal of a cure. “When I started in 2009, approximately 60 percent of patients were eligible for trials, but of those, only 10 percent ended up enrolled in a trial — largely because patients get lost to follow-up once they leave the hospital.” Since the nurse navigator arrived, the number of patients in clinical trials has gone up substantially. “Right now capture is much closer to 50 percent,” he says. “It’s a team effort obviously, but Gracia is the tip of the spear.” ■
The Barrow Women’s Board chose the Barrow Brain Tumor Research Center as its Special Project for the 2014 Barrow Grand Ball. It is a priority area for fundraising at Barrow Neurological Foundation.
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by Sara Baird, Carmelle Malkovich and Drew Whitney
Amazing medicine Stories from the files of Barrow Neurological Institute
Julie Stendal flew from Norway for a surgery pioneered and developed by Dr. Robert Spetzler at Barrow Neurological Institute.
Julie Stendal Six years ago, Julie Stendal, a nurse living in Oslo, Norway, was diagnosed with an arteriovenous malformation (AVM), a very rare neurological disorder causing abnormal tangles of arteries and veins in her spine. “I was told that the type of lesion I had was extremely rare and surgery was impossible,” says Stendal. “No one had ever seen anything like my condition. I was terrified of becoming completely paralyzed.” She underwent a small procedure in Paris and was told no other treatment option was available. For the next six years, she lived with the AVM knowing that it could rupture at any moment. In January, it did. This time, her doctor in Norway referred her to Robert Spetzler, MD,
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renowned neurosurgeon and director of Barrow Neurological Institute. With her mother by her side, Stendal flew from Norway to Phoenix for a specialized surgery to remove the AVM.
Funding from Barrow Neurological Foundation enabled Robert Spetzler, MD, to test the surgical procedure that saved Julie Stendal’s life. The procedure was pioneered and developed by Spetzler to provide an answer to a seemingly unsolvable problem. Research funding from Barrow Neurological Foundation was essen-
tial in providing laboratory facilities to test the new concept. More than 30 patients from around the world have benefited from the surgical innovation. Although the surgery itself had risks for paraplegia, Spetzler successfully removed the AVM from Stendal’s spine. Two days after surgery, the 26-yearold was walking once again. She was released from the hospital on Easter and is expected to make a full recovery. “It’s a miracle,” says Stendal’s mother, Kjersti Loevland. “Dr. Spetzler and his team … I don’t have words for it.” Stendal’s case was so complex that her neurosurgeon in Norway traveled to Barrow to observe her surgery and receive training to help future European AVM patients. “I’m just really happy that this place exists,” says Stendal.
Sam Schmid After more than two years of intensive neurorehabilitiation at Barrow Neurological Institute, former University of Arizona student Sam Schmid has officially graduated from his grueling therapies and returned home to Tucson. Schmid, 23, made international headlines in 2011 when he wiggled two fingers moments after hospital staff had discussed the possibility of taking him off life support. His tremendous recovery is being called miraculous by many. “It’s taken a great medical team as well as hard work and dedication to make the type of recovery I’ve made,” says Schmid. “Not only did I learn to walk and talk again, but I’ve learned how to reintegrate myself back into the community and to be successful.” Schmid suffered a brain aneurysm, stroke and a severe brain injury from a five-car accident in Tucson in 2011. Emergency responders declared him dead at the scene, but when Schmid began to respond, he was flown to Barrow for immediate brain surgery. A week later, he was unresponsive, and there was talk of removing life support. After ordering another MRI, his surgeon, Robert Spetzler, MD, recommended waiting one more week. That very evening, Schmid started to follow verbal commands. Schmid spent nearly 40 hours a week for two years undergoing intensive speech, physical and occupational therapy at Barrow’s Center for Transitional NeuroRehabilitation. “When I first started treating Sam, he was learning the basic functions of life such as swallowing,” says Kristi Husk, PsyD, a clinical neuropsychologist at Barrow. “Just two years later, he’s back in school and playing basketball. His recovery has been incredible.”
After a near-fatal car accident and a week in a coma, Sam Schmid began regaining consciousness and went on to make a remarkable recovery.
Watch Sam’s amazing story on You Tube Sam Schmid made international headlines in 2011 after making a miraculous recovery from near fatal brain injuries. Now Sam is inspiring others. “Be Inspired: Sam’s Miracle,” a three-minute video about his injury and courageous recovery, is available at YouTube.com/BarrowNeurological. It has had more than 72,000 views.
The Center for Transitional NeuroRehabilitation was key to Sam Schmid’s amazing recovery. The center is undergoing an expansion. Your gift of any amount will be matched by a generous donor and patient. For information, call 602-406-3041.
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David Cooper After smacking a line drive to right field in a Major League Baseball game on Aug. 22, 2012, Toronto Blue Jays’ David Cooper dove into first base so aggressively that he herniated a thoracic disk. Several doctors recommended rest, suggesting the damaged disk might retract over time and release the pressure from his spinal cord, allowing Cooper to return to play. Unfortunately, the situation for Cooper only worsened. Sidelined from his promising career and enduring agonizing pain over several months, Cooper was told he would need surgery to repair the disk, which was compressing and severely deforming the front of his thoracic spinal cord. Without surgery, he faced potential paralysis, but traditional surgery was intensive and meant Cooper might never return to bat again. With limited hope, Cooper was told about a world-renowned spine neurosurgeon, Curtis Dickman, MD, at Bar-
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row Neurological Institute in Phoenix. Dickman had developed a minimally invasive method of thoracoscopic neurosurgery in the 1990s to treat the 1 to 2 percent of back patients with a damaged disk located in the chest cavity. Previously, surgery required a large incision in the chest and removal of a rib, but using an endoscope as a guide to repair the disk, Dickman’s method required only two small incisions between ribs. Cooper underwent the minimally invasive four-hour procedure in April 2013. The following year, the 27-year-old returned to the Valley—not for medical treatment, but for spring training as the newest first baseman for the Cleveland Indians.
Dr. Curtis Dickman describes the minimally invasive procedure he used in 2013 to repair David Cooper’s herniated thoracic disk. Cooper returned to Phoenix this year for spring training as a first baseman for the Cleveland Indians.
Gifts to Barrow Neurological Foundation enable physicians and scientists to develop new treatments for people like David Cooper and Rashaad Gregory.
Rashaad Gregory A serious car accident internally decapitated Army specialist Rashaad Gregory, 19, in the summer of 2013. While most people die from this type of injury, and a scant number of victims survive as quadriplegics on life support, Gregory was able to leave the hospital with the assistance of a walker in just four months. Gregory was riding in a car with a friend when another vehicle slammed into theirs. The impact caused Gregory’s skull to tear away from his spine, a condition known as occipitocervical dislocation. Gregory was rushed to Barrow Neurological Institute where neurosurgeons performed an occipitocervical fusion, an innovative surgery that was perfected at Barrow. During the procedure, neurosurgeons used a titanium rod, screws and a piece of Gregory’s own rib to reattach his skull to his spine. Barrow neurosurgeons have more experience with this deadly injury than surgeons at any other hospital in the world.
“When someone suffers this type of injury, the head and spine are so very unstable that even gentle movement of a patient can lead to death,” says Kumar Kakarla, MD. “At Barrow, we have one of the world’s largest groups of survivors with this injury. Thankfully, Rashaad is also a survivor … and his outcome has been exceptional.” After the neurosurgery and three additional surgeries to repair his internal organs, Gregory faced intensive rehabilitation, but his strength and determination drove him to achieve milestones in record time. When he left the hospital in November, he was walking, talking and making plans to attend college to become an elementary school teacher. “A positive attitude changes everything,” says Gregory. “I can’t turn back the clock and wish this injury didn’t happen to me. Instead, I choose to move forward and make every day a gift.”
Rashaad Gregory, shown in the top photo with his girlfriend, Deondra Gray, survived an injury that is nearly always fatal. This postsurgery image shows the hardware that Barrow neurosurgeon Dr. Kumar Kakarla used to reconnect his spine to his skull.
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Maverick Almendarez Frequent severe nosebleeds in the middle of the night sent Maverick Almendarez to the doctor about a year ago. Although he was treated for allergies, Almendarez worried his condition was much worse, especially when he started to lose vision in his left eye and had bouts of dizziness that nearly caused him to collapse. “I’d wake up coughing and spitting up blood,” he says. “When I started noticing it more often, I thought it was a tumor or I had cancer.” Almendarez’s fears were confirmed by John Milligan, MD, an otolaryngologist at Barrow Neurological Institute. Milligan conducted an MRI and CT scan, revealing a potato-sized tumor on the side of Almendarez’s left eye at the base of his nose. Although the tumor was benign, if left intact, it could cause the 17-year-old to go blind. A multidisciplinary team at Barrow concluded Almendarez was a good candidate for a minimally invasive sur-
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gery performed by neurosurgeon Andrew Little, MD. The procedure was designed to remove skull base tumors through the nose rather than through a traditional craniotomy, which involves opening the skull. “Maverick’s tumor was in the perfect position to remove through this minimally invasive surgery,” says Little. “The surgery has many benefits, including a quicker recovery and a lower risk for complication.”
Almendarez was grateful to finish his senior year of high school as a normal teen. He graduated in May with plans for college, maybe even to become a neurosurgeon himself. “I’m so happy to have had such a great outcome,” he says.
“Maverick’s tumor was in the perfect position to remove through this minimally invasive surgery. The surgery has many benefits, including a quicker recovery and a lower risk for complication.” Andrew Little, MD
Benefactor briefs Ivy Foundation awards $3 million to brain tumor research at Barrow The Ben & Catherine Ivy Foundation awarded a $3-million grant to a threeway research effort between Barrow Neurological Institute, Translational Genomics Research Institute (TGen) and Nemucore Medical Innovations Inc. to identify more effective treatments for brain tumors. One of the goals of the grant is to enable Barrow, TGen and Nemucore to work collaboratively to identify new medications that can bridge the body’s blood-brain barrier, which typically impedes intravenous cancer drugs from reaching brain tumors. Researchers will target therapies delivered by nanotechnology systems to treat glioblastoma, the most common and most
aggressive form of malignant brain tumors. The project is an example of translational research, which aims to translate laboratory successes into effective patient care as quickly as possible. “We are excited about this innovative approach to research,” said Catherine Ivy, founder and president of the Ivy Foundation. “Knowing there is a tangible way to develop therapies specific to the needs of patients will enhance the care and treatment of every brain tumor patient—and that is priceless.” Based in Scottsdale, Ariz., the Ben & Catherine Ivy Foundation was founded in 2005 after Ben Ivy lost his battle with glioblastoma. Since then, the
organization has contributed more than $50 million to research to improve and lengthen the lives of brain tumor patients. “Our first and foremost goal is to improve the prospects for patients diagnosed with glioblastoma and to translate our academic science into safe and effective therapies,” said Rachael Sirianni, PhD, principal investigator at the Barrow Brain Tumor Research Center. “This innovative partnership and the funding provided by the Ivy Foundation will make it possible to bring forward academic research to benefit patients at Barrow and elsewhere.”
Women’s Board installs officers, adds new members The new Executive Board of the Women’s Board of Barrow Neurological Foundation was introduced, and committee chairs were appointed at the group’s annual Spring Luncheon on April 3 at Paradise Valley Country Club. They are Nancy Walker, chairman; Angela Melczer, chairman-elect; Shän Francis, advisory chairman; Carole Moreno and Sarah Suggs, ball co-chairs; Karen Meyer, finance chairman; Jan Cacheris, recording secretary; Ruth Lavinia, corresponding secretary; Penny Gunning, nominating chairman; and Sally Guenther, yearbook chairman. Established in 1965, the Women’s Board has raised more than $46 million for Barrow through the annual Barrow Grand Ball. Next year’s event, celebrating the board’s 50th anniversary, is slated for Jan. 15, 2015, at the Arizona Biltmore.
The Executive Board of the Women’s Board of Barrow Neurological Foundation for 2014-2015: Angela Melczer, Carole Moreno, Karen Meyer, Sally Guenther, Jan Cacheris, Nancy Walker, Shän Francis, Sarah Suggs, Ruth Lavinia and Penny Gunning.
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Family, friends carry out brain-tumor patient’s dream Although Barrow patient Kyle Claffey passed away in April after battling brain cancer for nearly four years, his family and friends celebrated his life’s dream of opening a nonprofit bike shop in Phoenix this May. Located at 5826 N. 16th Street, Grey Matter Foundation Bike Shop refurbishes old bicycles and then places them up for sale, donating a portion of proceeds to Barrow Neurological Institute for brain tumor awareness and research. Claffey was diagnosed while still in high school. Despite the disease, he became passionate about bicycling, pedaling long distances and working at a local bike shop with his twin brother, David. While battling his third round of cancer and undergoing chemotherapy, Claffey competed in the 3,000mile Race Across America event as a member of Team Barrow, raising money for brain tumor research. The team presented a check in the amount of
$110,000 to Barrow last November. Grey Matter Bike Shop is open seven days a week, managed by David and his father, Mike. Donations of used bikes in all conditions are accepted. In addition, the shop offers a full menu of services, from flat-tire repairs to brake alignments and full tune-ups. To learn more, visit www.gmfbikeshop.org or call 602-264-8820.
Mike, David and Tina Claffey celebrated the opening of a nonprofit bike shop on 16th Street in Phoenix to raise funds for brain tumor research. David’s twin brother, Kyle, passed away in April 2014 after a four-year battle with brain cancer.
Members of US Airways Do Crew, left, partnered with staff from Barrow Neurological Institute and St. Joseph’s Hospital to organize a recent community health and safety event at a South Phoenix school. The US Airways Do Crew participates in community-based projects organized by nonprofits within the airline’s hub cities.
The Sonntag 2014 International Multidisciplinary Oral Health Consortium brought together health professionals for a two-day meeting dedicated to developing and implementing a universal oral health assessment that can be used on both awake and comatose patients. Research has shown that good oral hygiene during hospitalization reduces infection and improves patient comfort. The first-ever consortium was made possible by a donation from Volker Sonntag, MD, and his wife, Lynne. Attendees included (left to right) Dr. Masumi Muramatsu, Japan; Dr. Craig Dale, Canada; Dr. Virginia Prendergast, Barrow Neurological Institute; Dr. and Mrs. Sonntag; Sandra DeVita, RN, RDH, USA; Jackie McCrae, ST, Research Fellow, England; Ros Davies, MS, Scotland; and Miki Kambayashi, Japan.
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The teddy bears that Charlotte Gould and her family contribute to the Barrow Cleft and Craniofacial Center come with special stitches sewn between their noses and mouths.
Local family hosts picnic, donates teddy bears to Barrow craniofacial patients Approximately 50 children, parents and staff from the Barrow Cleft and Craniofacial Center attended the first annual Gould Family Teddy Bear Picnic, organized by Valley resident Nicole Gould to honor her daughter’s wish to make sure all kids born with a cleft lip or palate receive a special teddy bear to comfort them. While pregnant, Gould learned via ultrasound that her daughter, Charlotte, now 6, would need multiple surgeries to repair a cleft lip and palate. In search of more information about the condition, she called the Cleft Palate Foundation. Soon after, a teddy bear with special stitches sewn between its nose and mouth arrived in the mail. Over the years, the stuffed animal, known as Charley Bear, became Charlotte’s best friend. Guests of the April 12th picnic, hosted at Granada Park in Phoenix, were treated to teddy bear cookies, gummy bears, bouncy balls, crafts and games. And, just as Charlotte does every year for her birthday party, she asked guests to forego gifts in lieu of financial donations. Monies raised are used to purchase Charley Bears for new patients at Barrow Cleft and Craniofacial Center.
Students view live brain surgery in 3D Dozens of Phoenix-area high school volunteers with Students Supporting Brain Tumor Research (SSBTR) took a break from classes in February to view a live 3D brain surgery and tour a research lab at Barrow Neurological Institute. As members of SSBTR, the students raise money for brain tumor research through an annual charity walkathon, which has contributed $2 million to the cause since the organization was founded in 2002. Much of the money is funneled into research at Barrow. “We invite the group to view a live brain surgery at Barrow on Presidents’ Day each year as a bit of a reward for all their hard work,” says Adrienne Scheck, PhD, who conducts neuro-oncology research at the institute. “This way they can see where the money goes and have a better idea of the lives they’re saving.” SSBTR was founded 14 years ago by teacher Steve Glassman and a handful of student volunteers shortly after three local high schoolers were diagnosed with and ultimately succumbed to brain tumors. The group’s first walkathon attracted support from four high schools and raised $7,500. This year’s walk on February 22 drew students from schools in Phoenix, Tucson and Flagstaff.
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by Melissa Frederick Morrison
Advancing neuroscience nursing Donors’ funding brings well-known experts to conference ■ At the 2013 Barrow Neuroscience Nursing Symposium, nurses from as far away as Japan and Great Britain learned how their colleagues are innovating therapies for stroke victims, watched brain surgery in 3D and heard from grateful family members about what nursing care had done for their loved ones. The 2013 symposium was also notable for its first keynote addresses, which were funded by the Barrow Women’s Board and the Warren & Mary Jane Crist Foundation. The former brought Joanne Hickey, PhD, from Houston, Texas. “Neuroscience nurses around the world know who she is,” said Barrow’s Virginia Prendergast, PhD, the event’s organizer. Dr. Hickey spoke about the incorporation of the scientific method into nursing from the beginning of her career in the 1960s, when trauma
The Barrow Women’s Board and the Warren & Mary Jane Crist Foundation sponsored two speakers at the 2013 Barrow Neuroscience Nursing Symposium. patients rarely survived and most stroke patients were doomed to languish in nursing homes. “’What can we do to help these patients?’” she wondered. “What I realized was, caring was not enough. It was science that I needed.” The Crist lecture featured Suzanne Burns, recently retired from the University of Virginia nursing school and medical center, where she directed the nursing clinical research program. She highlighted nurses who had overseen projects addressing issues fundamental to basic healthcare. One of her
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research teams, for example, conducted a study that demonstrated how such factors as the patient’s sitting position could affect a blood-pressure reading by as much as 14 points, leading to a potential misdiagnosis of hypertension. The New York Times reported the team’s published findings in 2006. Audience members donned 3D glasses to watch Barrow Director Dr. Robert Spetzler’s presentation demonstrating neurosurgeries using minimally invasive techniques to access deep tumors. Technological advances, such as a surgical microscope that can precisely pinpoint a mass’s location, mean less manipulation of surrounding tissue. Speech therapists Jana Thompson and Staci Neustadt demonstrated a new iPad and Droid app they developed that allows patients whose language capability has been obliterated by stroke to communicate. Neuropsychologist George Prigatano, PhD, advised nurses on how to stay safe around potentially violent patients who have lost impulse control as a result of a traumatic brain injury. Speakers included experts outside the realm of medicine. Commander K. Thor Eells of Colorado Springs, Colo., explained the injuries caused by different caliber bullets and bomb types. He warned trauma nurses to expect more victims of IEDs, like the one used in the Boston Marathon bombing. “I’ve seen more in the last year than I had in my previous 20 years in law enforcement,” he said. The conference also featured a more personal perspective provided by Greg Slack, whose wife, Lorna, suffered a seizure and collapsed in their Flagstaff living room two years ago. An aneurysm had burst in her brain. She was air-lifted to Barrow where, over the ensuing weeks, she began experiencing personality changes known as disinhibition.
“I found out my wife can throw tater tots as well as a major leaguer,” Slack recounted, while his wife and their two children sat in the audience. Such personality changes are signs of a complication called vasospasm, in which the brain’s blood vessels inexplicably narrow, preventing adequate oxygen from reaching the brain. It was the nurses—constant presences at Lorna’s bedside—who noticed her personality changes and set off the chain of treatment. “The reason my wife is doing so well today is the nurses caught all of those vasospasms,” Slack said. “The doctors set it in motion, but the nurses made it happen.” ■
Well-known neuroscience nurse Dr. Joanne Hickey (right) from Houston, Texas, gave the keynote address at the 2013 Barrow Neuroscience Nursing Symposium. Hickey’s appearance at the event was funded by the Barrow Women’s Board, represented by member Jean Meenaghan.
by Drew Whitney
Cash, cars, vacations and more! Spring Health & Wealth Raffle stuns $1-million winner, awards 2,400 prizes knowing he’d also won $125,000 in cash and an exotic European vacation. “The money goes to a great cause, but the prizes are great as well, obviously,” he said. Other happy raffle players include Trisha Holcomb of Phoenix, $50,000; Donna Einstein of Prescott, 2014 BMW 320i and $11,200; Debra Baker of Phoenix, 2014 Acura MDX plus $13,750; Ron Osborne of Glendale, $10,000; and Shaun Guyer of Surprise, $10,000. The biannual raffle awarded 2,400 prizes ranging from cash and cars to vacations and electronics. To see a complete list of winners and sign up for updates about the Fall 2014 Health & Raffle, visit HealthWealthRaffle.org. ■ ■ Mark Carlin, 49, is a husband, father and electrical engineer living in Gilbert, and now—thanks to the Health & Wealth Raffle benefiting Barrow and St. Joseph’s—he’s one happy millionaire, too. Carlin received a phone call from raffle director Erik Stauber informing him that he’d won a prize, which he could claim during an announcement ceremony at St. Joseph’s Hospital on May 30. “I’m speechless,” Carlin said, when Patty White, president and CEO of the hospital, surprised him with a check for $1 million. “On behalf of St. Joseph’s and Barrow, I thank you from the bottom of my heart for participating in this raffle,” said White. “The money raised provides help and hope for our patients, while advancing medical research at the hospital.” Carlin and his wife, Lisa, are raising two sons, Matthew, 16, and Erik, 14, who were both diagnosed with autism and treated at St. Joseph’s. “We have always appreciated the level of care we’ve received here,” Carlin said. Having purchased tickets regularly for the Health & Wealth Raffle, Car-
lin said he’s been lucky enough to win small kitchen appliances, but never expected to claim the Grand Prize. “I can’t even believe it’s real,” added Lisa. “I’m shocked … and amazed … and very happy.” Despite the $1-million windfall, the couple said they have no urge to splurge, but would use the money to paint their house and fix the roof, while putting the rest in savings. “We’re very practical people,” said Carlin. “Most likely we’ll set up a good trust for the boys. As a parent, I’ll always worry about the future of my kids, particularly because of their disabilities. It’s a relief that now I don’t have to think about it as much.”
Great prizes, even better cause Although the Carlins walked away with the grand prize, numerous other ticket purchasers celebrated big wins during the Spring 2014 Health & Wealth Raffle. Second-prize winner, Peoria resident Michael Goldstein, couldn’t have been happier when he sat behind the wheel of his brand new Porsche,
Among the winners of more than 2,400 prizes in the Spring 2014 Health & Wealth Raffle were Mark Carlin, Gilbert, Grand Prize winner of $1 million, shown with his wife, Lisa, and Donna Einstein, Prescott Valley, winner of a 2014 BMW 320i, shown with her husband, Dave. Both couples were presented with their winnings by Patty White, president and CEO of St. Joseph’s Hospital.
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News Barrow Connection volunteer inducted into Arizona Sports Hall of Fame Three-time U.S. Paralympic medalist Scott Hogsett was among five athletes inducted into the Arizona Sports Hall of Fame by the Phoenix Regional Sports Commission (PRSC) this spring. The organization honors athletes, coaches and administrators who have made significant contributions to their sport in the state. Hogsett has been playing wheelchair rugby for 18 years, 11 of them as a Paralympic athlete for Team USA, winning a total of three gold and two bronze medals. He was injured in an accident at age 19. He began playing wheelchair rugby in 1996 after moving to Phoenix to attend Arizona State University, where he earned a degree in recreational therapy. Besides serving as a player and coach for the Phoenix Heat wheelchair rugby team, Hogsett is a motivational speaker and volunteer with Barrow Connection, a program created to encourage people with disabilities to continue active, productive lives after discharge from the hospital. According to a statement released by the PRSC announc-
ing the 2014 inductees, “Scott Hogsett is not only a role model for wheelchair rugby athletes around the world … he is a role model for all athletes.”
Scott Hogsett, a long-time volunteer mentor at Barrow Neurological Institute, was one of five athletes recently inducted into the Arizona Sports Hall of Fame.
Spetzler receives local, national recognition Barrow Neurological Institute Director Robert Spetzler, MD, graced the cover of PHOENIX magazine’s “Top Docs” issue this April, recognized as the Valley’s number-one neurosurgeon. PHOENIX magazine’s top doctors are selected annually through a survey of 5,000 randomly selected Valley doctors, who are asked to nominate peers they believe are the best in their respective fields. Now in its 20th year, the list includes doctors in 51 specialties. Spetzler was also recognized by a healthcare education website, Health-
care-Administration-Degree.net, as one of the top surgeons in the world. The article, titled “The 20 Most Innovative Surgeons Alive Today,” singles out groundbreaking surgeons based on their education and medical accomplishments. Those who made the list are applauded for developing minimally invasive surgical techniques and scientific devises to benefit patients worldwide.
New board members, officers elected The Board of Trustees of Barrow Neurological Foundation recently added three new members and elected a slate of officers. The new members are David Farca, president, ToH Design Studio; Michael Hecomovich, chairman and CEO, Glob-
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al Marketing Services; and William R. Metzler, co-founder and principal, West Coast Capital Partners. Board officers include the following: chair – Michael Haenel, executive vice president, Cassidy Turley BRE Commercial Industrial Services Group; vice
chair – Dan Pierce, president, Kitchell; treasurer – Karen C. McConnell, partner, Ballard Spahr LLP; and secretary – Michael R. King, founding partner, Gammage & Burnham.
Craniofacial speech camp entertains while rehabilitating kids Sometimes it takes a little magical fun to get kids excited about learning. That’s exactly why the Happy Campers Speech Camp at the Barrow Cleft and Craniofacial Center offered a magic show, painting and cooking classes, along with a myriad of other recreational activities, to draw children ages 5 to 12 to its two-week summer camp in June. All children participating in the camp have speech problems due to cleft lip, cleft palate and other craniofacial disorders. The camp disguises therapy as playtime, encouraging the youngsters to develop a variety of communication skills used in everyday life. Speech skills often flourish during the sum-
mer session because—in addition to having fun—children are comfortable knowing they are surrounded by peers who face problems similar to their own. “I feel the same as everybody else,” said 12-year-old Juan Maldanado. “You don’t get made fun of here.” “These children and their families continue to treasure the camp experience years after they have attended,” added Deborah Leach, speech pathologist at Barrow, which offers the only accredited craniofacial program of its kind in the Southwest.
Barrow announces three appointments Jeremy Shefner, MD, PhD, has been selected to serve as chair of the Barrow Department of Neurology and the associate director of Barrow Neurological Institute. Shefner has served as the chair of the Department of Neurology at SUNY Upstate Medical University in Syracuse, N.Y., since 2004 and as the director of the ALS Program and the Neurophysiology Laboratory at SUNY since 1996. Shefner earned his medical degree from Northwestern University Medical School, completed his residency at Harvard Longwood Neurology Training Program and was a fellow at Brigham and Women’s Hospital before joining the faculty at Harvard Medical School. Shefner co-founded and cochaired the Northeast ALS Clinical Trials Consortium, the largest and most active ALS-dedicated group of its kind in the world.
Terry Fife, MD, has been appointed vice chair of the Barrow Department of Ne u r o l o g y, where he also serves as professor and director of the Balance Disorders and Ve s t i b u l a r Neurolog y Program. Since 2013, he has acted as interim chairman of the department and has served as executive chairman of neurology at the University of Arizona College of Medicine, Phoenix. Fife earned his medical degree from Texas A&M University and completed his internal medicine residency at the University of California, Davis, before receiving neurology training at the University of California, Los Angeles (UCLA). He then completed fellowship training in neuro-otology and balance disorders at UCLA on a National Institutes of Health National Research Service Award.
Alexander Tröster, PhD, has assumed the role of chair of the Barrow Department of Clinical Neuropsychology. For the last two years, Tröster has served as a professor and senior scientist at Barrow. Previously, he was a professor of neurology at the University of North Carolina School of Medicine, Chapel Hill, and co-director of the National Parkinson Foundation Center of Excellence. Tröster’s contributions to neuropsychology have been recognized with fellowships from the National Academy of Neuropsychology and the American Psychological Association. He serves on the editorial boards of five scientific journals and several advisory boards and is an examiner for the American Board of Clinical Neuropsychology.
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Why your gift really matters Trends in philanthropic giving
Brian R. Mortenson President and CEO Barrow Neurological Foundation Brian.Mortenson@DignityHealth.org Terri Hoffman Vice President of Development Terri.Hoffman@DignityHealth.org Alan Knobloch Senior Major Gifts Officer Alan.Knobloch@DignityHealth.org Angie Salicrup Senior Major Gifts Officer Angela.Salicrup@DignityHealth.org Melissa Collins Major Gifts Officer Melissa.Collins@DignityHealth.org Keith Kerber Development Officer Keith.Kerber@DignityHealth.org Joyce Kalal Manager of Donor Acquisition and Engagement Joyce.Kalal@DignityHealth.org Ani Gurlekian Events Manager Ani.Gurlekian@DignityHealth.org
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■ Not surprisingly, when the economy toppled back in 2007-2009, charitable giving tumbled right along with it. Fortunately, as the economy continues to recover, charitable giving has followed suit—much to the relief of philanthropic foundations and the sectors they support. This good news was presented in the Giving USA 2014 report, researched and written by the Indiana University Lilly Family School of Philanthropy. Since 1956, Giving USA has been providing the most comprehensive annual reviews of U.S. charitable giving for the nonprofit sector. The reports enable nonprofit leaders to identify trends for purposes of making educated decisions about budgets, fundraising plans and future goals. The newly released report indicates that total charitable contributions to U.S. charities increased by 4.4 percent in the past year, reaching an estimated $335.17 billion. Philanthropic gifts made in 2013 included 5 percent donated by corporations, 8 percent made through bequests and 15 percent awarded by foundations. The remainder—a whopping 72 percent—was gifted by individuals. Interestingly, the single largest influence on the increase in 2013, compared to giving in 2012, was the additional $9.69 billion that came from individuals. The importance of individual giving comes as no surprise to us at Barrow Neurological Foundation. After all, it took one individual, Charles Barrow, to plant the seed for Barrow Neurological Institute. That historic gift grew the roots of Barrow, but it has been the continued support of individuals within the community that has allowed the institution to flourish. With your dedicated generosity, Barrow has grown into a world-class center for brain and spine research, education and—most importantly—patient care. We are grateful to each individual who has supported this effort—whether through annual giving, an estate or planned gift, or a major gift in support of a special project. Collectively, your contributions have enabled the team at Barrow to save many lives in miraculous ways. We are hopeful that, through your generosity, we can save many more. Henry Ford said it best: “Coming together is a beginning; keeping together is progress; working together is success.” Thank you for working with us toward the success of Barrow Neurological Institute. Please contact us anytime at 602-406-3041 or visit us online at SupportBarrow.org. ■
Leave your legacy with Dignity Support the patient care, medical research, teaching and community outreach at Barrow Neurological Institute and St. Joseph’s Hospital and Medical Center with a gift in your will or trust. To learn how you can partner with us in providing world-class medicine for future generations, call 602-406-1025, email alan.knobloch@dignityhealth.org or visit www.planyourlegacy.stjosephs-phx.org.
Dignity Health Barrow Neurological Foundation 350 W. Thomas Rd. Phoenix, AZ 85013-4496 www.SupportBarrow.org
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