A magazine for the friends of Barrow Neurological Institute of St. Joseph’s Hospital and Medical Center
Focus on Nursing What makes Barrow nurses the best in their field
A Place Fit for THE CHAMP
Barrow opens new Muhammad Ali Parkinson Center
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Volume 22, Issue 1, 2010
Opening thoughts he importance of benefactors to Barrow Neurological Institute could well be the theme of this issue of Barrow. So many of the programs described within these pages have come about through donor support. Consider the first article about the research of Susana Martinez-Conde, PhD, and Stephen Macknik, PhD. Funding from our foundation helped these researchers establish and equip their laboratories, and launch research that has since made international headlines. Most recently, they provided the content for a special edition of Scientific American, the most widely circulated lay science publication in the world. Other researchers whose work is described later in the magazine have also received funding from Barrow Neurological Foundation. Examples of the impact of benefactors abound in this issue: the career-enhancing scholarships awarded to Barrow nurses by the Women’s Board, a first-ever speech clinic at the Barrow Children’s Cleft and Craniofacial Center made possible by a donor’s generosity, and two new facilities at Barrow that were built with donor funding—the bright new Emily Davis Treatment Area in the craniofacial center and the magnificent new Muhammad Ali Parkinson Center. We are extremely grateful to our many friends who plan and execute wonderful fundraisers on our behalf, including the Barrow Grand Ball, Celebrity Fight Night, the Lou Grubb Friends Fore Golf dinner and tournament, the Students Supporting Brain Tumor Research Walk-a-Thon, and the Parkinson’s Network of Arizona events. And finally, we are excited to welcome Louis Dolgoff, Dogfish Head Craft Brewed Ales, and the Off-Centered Experience they are planning for this October. Thank you for your ongoing support of Barrow Neurological Institute!
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Sincerely,
Robert F. Spetzler, MD Director, Barrow Neurological Institute
Mary Jane Crist Chief Executive Officer, Barrow Neurological Foundation
P.S. You can view this and past issues of Barrow online. Just visit our website, www.SupportBarrow.org, and click on the magazine icon in the lower left-hand corner of the home page. We’re also on Facebook (go to facebook.com and search for “Foundations of St. Joseph’s”) , and you can receive brief updates from us by going to our Twitter page (www.twitter.com/SupportBarrow) and clicking the “Follow Us” button.
On our cover: Brenda Haug, RN, CNRN, is one of the more than 100 nurses at Barrow Neurological Institute with neuroscience nursing certification. Our special section on nursing at Barrow begins on page 5.
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4: Wow! Barrow vision researchers provide content for entire special issue of Scientific American. 6: Advanced practice Special corps of nurses brings science to the bedside, helps colleagues give better care. 8: Nursing virtuosos Neuroscience certification elevates nurses’ skills, enhances care of patients at Barrow. 10: Beacon Award Barrow ICU receives coveted award. 12: The sky’s the limit Women’s Board helps nurses excel. 14: Seeing the world Barrow ICU nurse creates nonprofit for disabled adventure travel. 16: A place fit for The Champ Lonnie and Muhammad Ali celebrate the opening of new center. 19: Why I give John Dawson funds new area.
Contents
20: A royal flush for Barrow Barrow Grand Ball, Celebrity Fight Night XVI, Lou Grubb Friends Fore Golf 24: Off-Centered Experience October fine ales event will raise funds for brain cancer research and education. 26: Happy Campers Benefactor funds speech camp. 28: St. Joseph’s Amazing Patient stories from the files of Barrow Neurological Institute 31: Raffle rewards Biannual fundraiser benefits patients at St. Joseph’s and Barrow. 32: Benefactor Briefs 34: Research Update
Catherine Menor Editor/writer Catherine.Menor@chw.edu
Sally Clasen, Melissa Morrison, Sarah Padilla Contributing writers
Robert F. Spetzler, MD Director Barrow Neurological Institute®
Justin Detwiler Art director/designer
Brad Armstrong; Jeff Noble; D Squared Productions, Murphy/Scully Photography, Jackie Mercandetti
Mary Jane Crist, CFRE CEO, Barrow Neurological Foundation
Panoramic Press
• 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 or send mail to Barrow magazine, Office of Philanthropy, St. Joseph’s Hospital and Medical Center, 350 W. Thomas Rd., Phoenix, AZ, 85013. Please include your name, address, and telephone number in all correspondence. Visit us online at www.SupportBarrow.org.
wow! Barrow vision researchers provide content for entire special issue of Scientific American, on newsstands until July 12 ick up a copy of Scientific American for eye-popping articles and illustrations about visual illusions and what they tell researchers about the brain. Barrow vision researchers Susana Martinez-Conde, PhD, and Stephen Macknik, PhD, provided all the content for the 72-page magazine, which is on newsstands worldwide until July 12. The duo have been writing a monthly article for ScientificAmerican.com for more than two years. One of their articles was the most viewed in the website’s history. About 10 months ago, Scientific American’s editor contacted them about doing an entire issue on illusion. Drs. Martinez-Conde and Macknik contributed 10 articles and 169 illustrations to the special edition.
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In the magazine, the scientists explain why studying illusions can help vision researchers in their work: “Visual illusions demonstrate the ways in which the brain can fail to re-create the physical world. By studying these failings, we can learn about the computational methods used by the brain to construct visual experience.” Dr. Martinez-Conde runs the Laboratory of Visual Neuroscience, and Dr. Macknik runs the Laboratory of Behavioral Neurophysiology at Barrow. Their research has received support from Barrow Neurological Foundation (BNF). Your contributions to BNF help scientists such as these explore promising research ideas, and, as you can see, the results can be impressive!
focus on nursing
hile doctors receive much
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es. In this issue of Barrow, you’ll read about what makes Barrow nurses the best in their field.
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advanced practice
by Melissa Morrison
Special corps of nurses brings science to the bedside, helps colleagues give better patient care arrow neurosurgeons perform the operations that prevent aneurysms from bursting or tumors from spreading. Barrow nurses perform the recovery care that prevents pneumonia from invading or fevers from developing. The patient could not survive without either type of attention. And at Barrow Neurological Institute, more and more nurses are achieving advanced degrees to better carry out their role in helping patients heal. “I refer to neuroscience nursing as part of ‘the caring sciences,’” says Virginia Prendergast, NP-C, CNRN, and soon, PhD. She oversees advanced-practice nursing at Barrow, which includes 10 nurses—nine have a master’s degree in neuroscience nursing and one just earned her doctorate of nursing practice. These nurses incorporate the latest research, including their own, into bedside practice, continually improving how patients and their families are cared for. They make sure that Barrow nurses stay current, educating them in new techniques and imparting new information as it is proven effective.
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Nurse practitioner Michele Grigaitis was just awarded her doctorate of nursing practice based on a project to teach nurses how to identify delirium in elderly neurosurgical patients. Delirium looks similar to dementia, but, unlike dementia, is reversible, once the underlying cause, such as infection, dehydration, or a medication reaction, is addressed. Grigaitis, who works with five neurosurgeons in Michele Grigaitis Barrow’s acute care area, knew that, statistically, over half of practitioners, including nurses, treat confusion in elderly patients as an expected finding and, therefore, don’t
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address its root causes. So she taught Barrow nurses to use a cognitive assessment tool to identify, and thus allow early treatment of, delirium. “It’s an issue of people assuming an elderly person is going to be confused, when in reality it’s abnormal,” she says. “Getting nursing to see a mental-status change as abnormal is, and continues to be, a paradigm shift.” As a result of her research, the assessment tool may be implemented hospital-wide. And its impact goes beyond St. Joseph’s; in June, Grigaitis presented the topic to the European Neurological Society in Berlin. Prendergast is another example of a nurse who’s bringing science to the patient’s hospital bed. “I’ve always wanted to be a nurse, always, always,” she Virginia Prendergast says. “People would ask, don’t you want to be a doctor? No! I want to be a nurse at the bedside.” A native of Scottsdale, she fell in love with neuroscience as a student at Minnesota’s Mayo Clinic and returned to St. Joseph’s (where she was born) to start her career in 1979. She went on to get her master’s degree and then become the hospital’s first inpatient neuroscience nurse practitioner in 1995. She is currently working on her PhD remotely at Sweden’s University of Lund, an opportunity that came about after she gave a lecture to medical personnel there. Prendergast’s area of research could be life-saving to ICU patients who rely on a ventilator to breathe for them in the critical hours following neurosurgery. Any invasive procedure, such as a tube into the lungs,
Ventilator-acquired pneumonia
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The Advanced Practice Nursing team, from left to right: Manny Mejia, NP-C, CNRN; Madona Plueger, MSN, CNRN, ACNS-BC; Terry Bachman, MSN, CNRN, CNS; Michele Grigaitis, FNP-BC, DNP, CNRN; Mary King, MSN/Ed, CNRN; Charlotte Schiestel, ANP-C, CNRN; Denita Ryan, ANP-C, CNRN; Simon Parkinson, FNP-C; Elise Henling-Ohlwiler, CRRN, RN, BSN; and Virginia Prendergast, NP-C, CNRN. heightens the chance for a patient to acquire a deadly infection, in this case pneumonia. The phenomenon is so common among ventilated patients that it has a name: ventilator-acquired pneumonia, or VAP. “VAP has a 40- to 60-percent mortality rate,” Prendergast says. “My PhD centered on oral health among intubated patients in the neuro ICU. Poor oral health has been recognized as perhaps contributing to VAP.” Some nurses have traditionally been reluctant to clean the mouths of intubated neuro patients for fear that the discomfort would increase pressure in the brain. Prendergast’s research, the first part of which was published last year in the American Journal of Critical Care, determined that oral care was in fact safe to perform. She is currently analyzing data on what type of oral care is the most effective, thanks to a Barrow Neurological Foundation research grant. It’s so simple, yet so important: Brushing ventilated patients’ teeth can prevent them from acquiring a fatal infection and promote patient comfort. That’s nursing in a nutshell. “So we need to have people who have academic training in research methodology, coupled with a strong clinical background, who can look at ways of providing care that are going to improve patients’ quality of life, improve outcomes, and also improve their daily experience,” she says. The advanced-practice nurses she oversees work in all areas of neuro, including rehabilitation, acute care, ICU, telemetry, and radiology. Among them are five nurse practitioners, two certified nurse specialists, and one doctor of nursing practice. Madona Plueger, MSN/Ed, CNRN, who covers the Neuro Acute/Epilepsy and Neuro Telemetry Units, applies her advanced degree as one of three clinical nurse specialists working under the direction of Pren-
dergast at Barrow. Their roles include making sure newly hired nurses have the skills required of them and that all Barrow nurses have the equipment and resources they need. Recently, Plueger assisted the nurse caring for a patient who was moving to hospice care. The patient had multiple physicians following him, resulting in conflicting messages for the bedside nurse and the family. “I was able to look at the situation from all angles and summarize for the patient and his family, which helped the nurse,” she says. Plueger began her career as a nursing assistant, then progressed up the ladder to an associate’s nursing degree, a bachelor’s, and a master’s, picking up a certification in neuroscience nursing along the way. Earlier this year, she also became a certified clinical nurse specialist in adult health nursing. The clinical nurse specialist role ties together the needs of the system, the patient, and the nurse. “Each role in nursing complements the other,” she says. “Each way you really learn to look at things a little bit differently.” Prendergast attributes her staff’s pursuit of higher degrees to support from Barrow and St. Joseph’s administration, including Barrow’s director, Robert Spetzler, MD, and St. Joseph’s chief nurse executive, Julie Ward (an MSN herself). “I’ve realized such value in pursuing education,” Prendergast says. “Each step along the way, I’ve gained more skills that have enabled me to take better care of patients and grow colleagues who have a mutual desire to succeed in patient care.” ■
Meeting patient needs
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nursing virtuosos Neuroscience certification elevates nurses’ skills, enhances care of patients at Barrow he credit on Amber Austin’s badge reads CNRN—certified neuroscience registered nurse—though patients probably don’t notice. What they do notice is her confidence. “If they look scared, I tell them, ‘This is what I do, this is all I do, this is all I’ve ever done, this is all I intend to do,’” says Austin, who works in Barrow Neurological Institute’s Neuro Acute Unit with stroke, seizure, and brain-tumor patients, among others. “It’s like taking your car to a brakes guy when you need the brakes fixed, instead of to a general mechanic.”
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Austin is one of over 100 Barrow nurses who have achieved the neuroscience nursing certification, a process that requires 20 to 30 hours of additional schooling and passing a national exam. The number is the largest concentration of CNRNs in any hospital in the country, according to Virginia Prendergast, NPC, CNRN, who teaches the classes. (The Illinois-based American Association of Neuroscience Nurses does not consistently record the employment history of its CNRNs and could not confirm this, according to executive director Stacy Sochacki.) Prendergast, manager of Barrow’s advanced-practice nurses, started the CNRN classes six years ago so nurses could match surgeons in proficiency in their respective fields. “I work with the best neurosurgeons in the world. I describe them as neurosurgical virtuosos,” Prendergast says. “I think our patients deserve to have nursing virtuosos. “Our patients are among the most vulnerable—you can do without a limb, do without a kidney, but an insult to the brain strikes at the core,” she says. “That strikes at the very essence of who you are. When patients have neurological disturbances, the nurse has to help that patient adapt to changes in their cognition or their mobility or their language. That’s huge.” Nurses must have two years of experience before they can attempt to become CNRNs. The additional training, taught over 12 weeks, goes into far greater depth than the traditional nursing-school education. “I want nurses to have a strong foundation in clinical neuro anatomy and assessments,” Prendergast
says. “If the nurses don’t understand where a lesion is or what the disease process is and how to assess the patient, then they are not as skilled in terms of anticipating problems, intervening, and helping to promote optimal patient outcomes.”
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Amber Austin, RN, CNRN
Brenda Haug, 25, started in Barrow’s Neuro ICU fresh out of nursing school three years ago. She took the class as soon as she was allowed to. “When I came here as a new grad, I was surprised at how in-depth neuro could be—all the neurological disorders, all the structural problems,” she says. “The class really opens everything up. We go over every kind of disease process and discuss the pathophysiology of it. “It helps us to understand more the ‘why’— ‘I know we’re supposed to do it that way, but why?’”
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“It’s like taking your car to a brakes guy when you need the brakes fixed, instead of to a general mechanic.” Amber Austin, RN, CNRN
Haug’s co-worker in the ICU, Maggie Skeffington, also got her CNRN last year. She has noticed its impact when she educates families about what their loved one is experiencing, such as a recent patient with a subarachnoid hemorrhage. “His family was having trouble with, ‘What’s happening now?’” Skeffington, 29, says. “From class, I was able to explain to the family what to expect and the general timeline.” Barrow patients and their families may not notice the letters next to Austin’s, Haug’s, and Skeffington’s names, as well as those of 100-plus of their colleagues. But they benefit from what those letters represent. “The certification exam helps nurses learn in greater depth about the anatomy of the central nervous system, neuropharmacology, disease processes—but most importantly to learn how to care for those patients,” Prendergast says. “I want a nursing virtuoso at every single bedside. Our patients deserve the best—from each of us.” ■
Educating patients and families
Brenda Haug, RN, CNRN, top left, Brian Petty, RN, CNRN, and Carla Seiler, RN, CNRN, top right, and Maggie Skeffington, RN, CNRN, above
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beacon award Barrow ICU unit one of six in nation to receive coveted award hen the Neurosurgical Intensive Care Unit moved into its new space on the fourth floor of the Barrow Neuroscience Tower in 2006, the staff decided to develop a new easy-to-remember
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have received a Beacon Award, and just six of those units are neuroscience ICUs. “The Beacon Award for excellence in critical care is something every member of our staff and our multidisciplinary team has worked hard for,” says Stephanie Strickland, RN, CNRN, the clinical manager of the unit. “The award is recognition of the exceptional patient care we strive for and our continual quest to do better, try harder, and make a real difference to our patients and their families as well as to the community we serve.” Strickland credits Diane King, RN, CNRN, one of the unit’s supervisors, for the staff’s decision to pursue the coveted award. “Shortly after Diane was hired, she began talking about the Beacon Award,” says Strickland. “I think one reason she thought we could win the award was because of the spirit of the unit.” King says that while she may have had the initial idea, winning the award was a team effort. “Our staff strives to do their very best every day and to serve as strong patient advocates,” she says. The 98-page application for the award included information about the unit’s recruitment and retention; education, training, and mentoring; evidence-based practice and research; patient outcomes; healing environment and leadership; and organizational ethics. In the area of patient outcomes, for instance, the 32bed unit has implemented a number of processes to ensure high-quality care. Nurses and other members of the medical team—employees from pharmacy, respiratory therapy, physical therapy, case management, and other areas—meet twice a week to discuss every patient on the unit. The rounds speed up decision-making and lead to better patient care. Another example of the Neurosurgical ICU’s commitment to improving patient outcomes is the discharged-patient call system. The nurses developed the call system when the hospital began discharging some patients home from the unit rather than to a step-down unit. “We call every discharged patient to
Ensuring high-quality care
Diane King, RN, CNRN, and Stephanie Strickland, RN, CNRN
vision statement that they could all rally behind. They agreed on these six words: “Dedicated to patients, committed to excellence.” A little over three years later, the unit received word that they had won their profession’s highest award for commitment to quality nursing care—the Beacon Award from the American Association of Critical Care Nurses. The Beacon Award recognizes the nation’s top pediatric, progressive, and adult critical-care units for their commitment to high-quality critical-care standards and dedication to the exceptional care of patients and families. Of the 6,000 ICUs nationwide, only 188
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make sure that everything is going well, that we’re doing the right thing,” says Strickland. Education is highly valued here, as shown by the fact that 74 percent of the RNs in the Neurosurgical ICU who are eligible to take a special neuroscience certification exam have done so and that all of them passed the grueling exam. (See related story on pages 8-9.) The unit’s emphasis on nurse education led to the development of a series of courses after two particularly difficult patient-family situations. In these courses, the nurses learn to recognize and respond effectively to families in crisis; to respect cultural and spiritual diversity; and to employ ethics at the bedside. The Neurosurgical ICU staff works hard and plays hard. The unit’s Recruitment and Retention Committee raises money for an annual dinner celebrating employee milestones, an event that helps build staff morale and job satisfaction. Anna Turner, RN, attended one of those dinners when she was celebrating her 10th year at St. Joseph’s. “I’ve been here 13 years, and that was the first time I’d had that. There are a lot of great units here, but this one is different. It makes you feel valued.” The team has also collaborated on several community outreach projects, including a farm animal donation program benefiting families in Africa, a sponsorship program for children in India, a holiday pizza party for students in the Wilson School District, and an annual Thanksgiving dinner held at the hospital for family members of Neurosurgical ICU patients. As a result of these efforts, turnover in the unit is low, and when positions are available, the staff recruits new team members from other units at St. Joseph’s and from other hospitals. Along with the Beacon Award, the Neurosurgical ICU received the 2009 I Am St. Joseph’s Award and has been nominated for the CHW Shining Star Award and St. Joseph’s Values in Action Award. In May, Strickland and King traveled to the national conference of the American Association of Critical Care Nurses, where they were recognized as Beacon Award recipients. While such public recognition is gratifying, these nurses are quick to say that the real point of it all is giving great patient care. “An award is only as good as the last patient you took care of,” Strickland says. ■
Keeping employee morale high
Top, Elizabeth Kuznia, RN, cares for a patient in the Neurosurgical ICU. Bottom, Nadia Wolderzak, RN, helps Juana Pallanes back into bed.
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the sky’s the limit Women’s Board helps Barrow nurses excel
wenty-seven nurses from throughout Barrow Neurological Institute have acquired more training and education during the last two years, thanks to the Women’s Board of Barrow Neurological Foundation. What began as a project to recognize Barrow nurses for their educational accomplishments and to help them look more professional has expanded into programs that send some nurses to conventions and enable others to pursue an advanced degree. “We wanted them to look more like nurses, so we started giving them white jackets,” explains Jean Meenaghan of the original project. “When they received their CNRN (certified neuroscience registered nurse) accreditation, we would give them a white jacket with their name and area of specialty.” Meenaghan is a nurse by background. Before starting her family, she was a surgical nurse in New York and then worked as an industrial and school nurse there. When she joined the Women’s Board in 1999, she brought along her passion for nursing. “Once you’re a nurse, you never stop being one,” she says. “Nurses are so important, but they don’t get the recognition they deserve.”
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At Barrow, Meenaghan became acquainted with Julie Ward, RN, now chief nurse executive at St. Joseph’s. It was Ward, says Meenaghan, whose ideas inspired the Women’s Board to develop the white jacket and scholarship programs. Every year since 2005, the Women’s Board has paid for 10-20 nurses to attend annual conventions of professional nursing organizations. “They are very involved,” says Meenaghan of the participating nurses. “They make these big, beautiful posters showing what they learned. They really give terrific publicity for Barrow every time they go to a convention.” In 2007, the Women’s Board Scholarship Fund was established, and the first four scholarships were pre-
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sented in the fall of 2009. The Women’s Board intended to award three scholarships of $2,500 each, but four applicants so impressed them that they decided to make an exception and grant four awards. Academic scholarships were given to Marinor Condes, BSN, RN, CNRN, Shayna Laub, BSN, RN, CNRN, and Mariellen Solis, RN, while Cynthia Bordson, RN, CNRN, received a fellowship to study epilepsy under David Treiman, MD. For Shayna Laub, receiving the $2,500 award means that she can accelerate her pursuit of a master’s degree in nursing leadership at Grand Canyon University. “I was going slow so I wouldn’t have to pay as much out of pocket [St. Joseph’s offers a tuition reimbursement program with yearly limits],” says the young nurse, who began working at Barrow as an extern five years ago. “I love what I do—bedside nursing—but I definitely want to move toward an administrative position.” While Laub is a relatively new nurse, she has already accomplished much. She earned a bachelor’s degree in healthcare administration at the University of Arizona and a bachelor’s in nursing from Phoenix College. Since joining Barrow, she has received her CNRN accreditation, serves on the Medical-Surgical
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Women’s Board Support of Nursing at Barrow
2009 Scholarship Winners ($2,500 each) Cindy Bordson Shayna Laub Marinor Condes Mariellen Solis
2009 World Federation of Neuroscience Nurses Meeting, Toronto Terry Bachman Simon Parkinson Cynthia Bordson Madona Plueger Michele Grigaitis Virginia Prendergast Mary King Daisy Quintanilla Manny Mejia Tara Trakes Dennis O'Hanlon Eileen Warbington
2010 American Association of Neuroscience Nurses Meeting, Baltimore Terry Bachman Lisa Ortiz Cynthia Bordson Madona Pleuger Sarah Christopher Virginia Prendergast Mary King Trisha Robinson Barbara Lee Julie Smith Erin O'Brien
Shared Governance Council, is a quality delegate for her unit, and participates in the hospital’s C.A.R.E Career Ladder Program, a voluntary program that recognizes and rewards staff for participating in activities that promote professional growth and clinical excellence. “I’m proud to say I work for Barrow,” Laub says. “You get to learn every day. There’s always something new. It’s an amazing place.” It is that enthusiasm for Barrow that earned Laub a scholarship from the Women’s Board, says Meenaghan. “They have to be committed to education and to improving their knowledge. And they have to be at least a little enthusiastic about Barrow.” The scholarship recipients are not only enthusiastic about Barrow, they are also grateful to the Women’s Board, says Marinor Condes. “Because of the scholarship, I have only six classes left to earn my master’s in nursing education.” ■
‘An amazing place’
Top, Shayna Laub, RN, CNRN, received one of four scholarships awarded by the Barrow Women’s Board. Above, Sarah Christopher, RN, CNRN, and Erin O’Brien, RN, BSN, display a poster created after a nursing convention.
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seeing the world ICU nurse starts non-profit for disabled adventure travel
lat tires, missed flights, dismal hotel rooms. We’ve all experienced the trials of travel. But for the disabled, traveling can range from a minor hassle to downright impossible. St. Joseph’s/Barrow ICU nurse Lance Blair, RN, knows this all too well. A lower-leg amputee with a passion for adventure traveling, he wasn’t about to let his injury keep him from doing something he loved. The two months Blair spent in an ICU after being hit by a drunk driver when he was 18 fully ignited his passion.
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“It [the accident] instilled a huge desire to get out and see the world—to see everything that I almost didn’t get a chance to see,” says Blair. Today, nearly 22 years later, Blair wants to make sure that other people with disabilities have the opportunity to experience the thrill of independent adventure, as well. That’s why in 2008 he founded Disabled Explorers, a nonprofit organization whose mission is to enhance the quality of life for the disabled through independent four-wheel-drive backcountry travel.
story by Sarah Padilla
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Ever since his accident, Blair has helped mentor and Porter Broughton, an Idaho man paralyzed in an counsel newly disabled individuals. Most are depressed auto accident three years ago, came across information and want to know how to regain a sense of inde- about Disabled Explorers while researching off-road pendence and how to keep up with able-bodied friends RVs online. In May, Porter, his wife, his caregiver, and and family. Eventually, Blair started getting too many several friends met Blair and a group of volunteers in referrals to keep up with. Escalante, Utah, for a three-day adventure. Last summer, he and some friends embarked on Broughton, who enjoyed hiking and camping before what would be the inaugural journey of Disabled his accident, was not only able to experience the thrill Explorers—a 24-day, 5,000-mile camping and off-road- of driving the van through the rugged Utah terrain, but ing trip from Canada to Mexico. he also gained valuable tools—such as how to set up “Between looking for my own solutions and real- an RV—that will help him when traveling in the future. izing that there wasn’t really an outlet for one-on-one “Lance is a real hero. He’s doing a great thing,” he says. individual travel for this population, I came up with The care Blair received after his accident led him to the concept of Disabled Explorers,” he says. a career in nursing. Today, he floats among the hospital With the support of his wife ICUs, working a few nights a and two sons, Blair took out a “It [the accident] instilled week so he has time for Disabled home equity loan to help fund Explorers during the day. a huge desire to get out the nonprofit’s main investment And while he gets much sat– the $115,000 Wheelchair Van isfaction from his job, Blair says and see the world— for Expeditions, or WAVE. This Disabled Explorers has allowed to see everything that I him to broaden his nursing skills adapted vehicle has everything a disabled traveler might need in almost didn’t get to see.” and connect with his participants the backcountry—from a wheelon an emotional level, something chair lift and adapted gear to that’s rare with his critically ill or Lance Blair, RN satellite tracking and cameras to injured ICU patients. view the vehicle’s underside. With a kitchen, bath“I would be in the outdoors anyway,” says Blair. room, and beds, the temperature-controlled WAVE is “The difference now is that I get to sit in the passenalso a hotel on wheels. ger seat and watch someone else completely light up. Disabled Explorers is not a tour company or guide I get to see a side of people I don’t get to see in the ICU.” service. And while Blair’s background and training Blair hopes to make Disabled Explorers part of make him the official expedition leader, the participants Barrow’s annual Day on the Lake event, which allows run the show. “Our number-one goal is to have the par- disabled participants to enjoy adaptive water sports ticipants behind the wheel and in charge,” says Blair. at Bartlett Lake one weekend each spring. While he has “They drive the van, and they navigate.” high hopes for the future of the nonprofit, he is limitSeveral times a month, Blair takes a participant on ed by the fact that it is supported solely by donations, a day trip in Arizona, perhaps to the Table Mesa Trail volunteers, and his personal investment. near Cave Creek or to Saguaro Lake. Every six weeks But, it’s all worth it, Blair says, when he sees the or so, Disabled Explorers embarks on a multi-day trip expression on the face of a Disabled Explorer particito such places as “Devil’s Highway” along the Ari- pant who has just reclaimed a sense of independence. zona/Mexico border and the Moab area of Utah. For more information, visit DisabledExplorers.com ■
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a place fit for
the champ Lonnie and Muhammad Ali celebrate opening of new Muhammad Ali Parkinson Center at Barrow uhammad Ali continued his fight against Parkinson’s disease in December when he celebrated the launch of the nation’s most comprehensive Parkinson’s disease facility—the new Muhammad Ali Parkinson Center (MAPC) at Barrow Neurological Institute. One million Americans live with Parkinson’s disease, and about 60,000 new cases are diagnosed each year. There is no cure. Ali, who is a three-time Heavy Weight Boxing Champion and the most famous athlete in history, was diagnosed with the brain disorder in 1984. He and his wife, Lonnie, attended the grand opening event. Physicians at the new 10,000-square-foot facility expect to see about 1,600 patients annually, double the current number, and thousands more patients and their families are expected to attend one of the center’s numerous classes, support groups, and exercise activ-
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Muhammad Ali receives the American Academy of Hospitality Sciences (AAHS) Humanitarian Award from Joseph Cinque, president and CEO of AAHS, as Jimmy Walker of the Celebrity Fight Night Foundation and Marilyn Williams look on.
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ities. The original center has drawn patients from across the United States since it opened in 1997. “When the original Muhammad Ali Parkinson Center opened at Barrow, we knew that we were embarking on a historic project that would change many lives,” said Abraham Lieberman, MD, director of the center, which is located on the campus of St. Joseph’s. “Thousands of people have come to the Ali Center for
help and hope. Muhammad is ‘the greatest,’ and this new facility reflects his reputation. “Today, the center, with our tremendous medical team, researchers, and community education programs, is truly a reflection of Muhammad’s greatness and Barrow’s reputation,” said Dr. Lieberman. The expansive, state-of-the-art facility is double the size of the original center and brings together medical, rehabilitation, social, and educational services and research into one location. The Muhammad Ali Parkinson Center has been named a Center of Excellence by the National Parkinson’s Foundation. Highly competitive and selective, the designation is held by only 27 other hospitals in the United States.
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“The grand opening of the new center was a celebration of the power of philanthropy. We were proud to pay special tribute to Celebrity Fight Night, Lonnie and Muhammad Ali, the Muhammad Ali Center, and Jean Grossman.” Mary Jane Crist
Along with his wife, Lonnie, dozens of other celebrities and well-wishers, Ali toured the Center, stopping to talk and clown with the medical team. “Muhammad and I are delighted to share in the excitement of the grand opening of this new center,” said Lonnie. “Our overriding goal is to help patients and their families live full and productive lives. This disease has been a journey for us, and we have received a lot of help along the way. Our hope is that this center helps many others in their journey.” During the grand opening, the Arizona Community Foundation announced that a fund to support the MAPC has been established. The endowment fund, started by a donation from the Muhammad Ali Center in Louisville, Kentucky, will support patients and their families at the MAPC. Additionally, a new endowed fellowship, the Harold and Jean Grossman Israeli Fellowship Program, was
announced. The fellowship gives an Israeli neurologist the opportunity to work at the MAPC and teach Barrow residents and fellows. “The grand opening of the new center was a celebration of the power of philanthropy. We were proud to pay special tribute to Celebrity Fight Night, Lonnie and Muhammad Ali, the Muhammad Ali Center, and Jean Grossman,” says Mary Jane Crist, CEO of Barrow Neurological Foundation. ■
Left, Marilyn Harris, chairman of the Board of Directors of the Arizona Community Foundation, announces a new ACF fund established by Lonnie and Muhammad Ali and the Ali Center in Louisville, Kentucky, to benefit the MAPC. Above, benefactor Jean Grossman is on hand for the announcement of the Harold and Jean Grossman Israeli Fellowship Program at the MAPC.
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muhammad ali parkinson center
he new Muhammad Ali Parkinson Center (MAPC) is located in the Lonnie and Muhammad Ali Pavilion on the St. Joseph’s campus and includes 10 exam rooms, a tremor exam room, a botulinum toxin treatment room, a tilt room to help evaluate patients with orthostatic hypertension, and a balance lab. It features physical, occupational, and speech therapy rooms, a multipurpose room for education and recreation, a resource room with books, videos, and computers, and a store featuring educational materials and equipment. “I believe the MAPC is a model nationally and internationally for providing integrated care,” said Linda Hunt, CHW service area president, and president and CEO of St. Joseph’s. “Combined with our neurosurgeons who offer treatments like deep brain stimulation, the new MAPC is unsurpassed.”
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Critical to the success of the MAPC is its broad bi-language activity and educational programming, which includes programs such as Tai Chi, ballroom dancing, golf therapy, and salsa dancing. ■
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why i give Benefactor’s gift honors best friend and his stepdaughter long-time friendship has led to new a area for children with cleft lip and palate, and other craniofacial disorders at Barrow Neurological Institute. “It’s big. It’s beautiful. It’s bright and clean,” says Patricia Glick, DMD, an orthodontist at the Barrow Children’s Cleft and Craniofacial Center, of the new Emily Davis Treatment Area. Children with craniofacial disorders receive dental treatment, a critical component of care for these children, in the new area. John Dawson, owner of the Scottsdale Plaza Resort, provided funding for the center in honor of his best friend Bob Marrs’ stepdaughter, Emily Davis. Davis, now 24, was born with cleft lip and palate. The young special education teacher, who lives in St. Paul, Minnesota, began treatment when she was 12 days old and had her last craniofacial appointment in 2009. She has degrees in philosophy and communication and is working on a master’s degree in education.
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Top right, John Dawson and Emily Davis cut the ribbon during a ceremony for the new Emily Davis Treatment Area at the Barrow Children’s Cleft and Craniofacial Center as Patricia Glick, DMD, and Stephen Beals, MD, look on. Above, also at the ceremony are Davis’ sister and her mother and stepfather, Jill and Bob Marrs.
“I couldn’t believe it,” says Davis of Dawson’s gift. “It was such a kind thing to do, not only for me but for my family and for all the kids who will come here.” Dawson and Marrs have known each other for 38 years. Dawson became acquainted with Davis after her mother, Jill, and Marrs wed. “She is a really remarkable young woman,” Dawson says. “I told her she’s been touched by an angel. She’s very special, an inspiration.” Dawson decided to make a contribution to the renovation of the Barrow Children’s Cleft and Craniofacial Center after learning of the project from Robert Hopkins of Barrow Neurological Foundation. The gift was made through the 2009 Barrow Grand Ball. At a ribbon-cutting ceremony for the Emily Davis Treatment Area, Dr. Glick told Davis, “I hope our simple words somehow convey our appreciation to you. Thank you for not just your financial support but also for your faith in us. We understand that this is a tremendous gift and that it comes with a tremendous responsibility.” The Barrow Children’s Cleft and Craniofacial Center is the only comprehensive program of its kind in the Southwest. The center cares for about 6,400 children, ages 0-21, with patients coming from throughout Arizona, as well as parts of Utah, Colorado, New Mexico, and Texas. To find out how you can contribute to phase 2 of the craniofacial center renovation project, please contact Barrow Neurological Foundation at 602-406-3041. ■
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a royal flush for barrow Barrow Grand Ball
Photos from top, Barrow Ball: Ardie Evans, John Dawson, Jane Edmunds, and Ann Denk; Pat Goldman and Robert Greening; Bruce and Diane Halle, and Stevie and Karl Eller.
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The 2010 Barrow Grand Ball brought together friends and supporters of Barrow on January 16 for an elegant evening of gourmet food, fine wine, live music, and dancing at the Arizona Biltmore. Women’s Board members Ann Denk and Ardie Evans chaired the 45th annual event, which raised more than $2.5 million for Barrow. Benefactors made 157 gifts through the ball, including the following exceptional contributions: Surprise Gift Robert Greening - Center for Adaptive Brain Function Chief of Staff: John Dawson - underwriting of the 2010 Barrow Grand Ball Sharon Dupont McCord and Robert K. McCord Fund for collaborative research involving Barrow, ASU, and TGen (lead gift) Nancy and Lee T. Hanley – Center for Adaptive Brain Function Barrow Dean: Mr. and Mrs. Geoffrey H. Edmunds - Spine surgery Ardie and Steve Evans – Spine surgery Mr. and Mrs. Robert C. Hobbs Sr. – Karen and Robert Hobbs and the Hobbs Family Grant for Multiple Sclerosis Dr. and Mrs. Volker K.H. Sonntag - Sonntag Academic Pavilion Dr. and Mrs. Robert F. Spetzler – Sonntag Academic Pavilion White Coat Fellow: Mr. and Mrs. Bennett Dorrance - Center for Adaptive Brain Function Stevie and Karl Eller - TelePresence Education and Surgical Informatics Mr. and Mrs. David Glew - Center for Adaptive Brain Function Mrs. Patricia Goldman - Center for Adaptive Brain Function Mr. and Mrs. Gary F. Hewson - Center for Adaptive Brain Function Ruth E. and Robert F. Lavinia - Pediatric Neurogenetic Disease Research Mr. and Mrs. Robert H. McKee - Center for Adaptive Brain Function
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Mr. and Mrs. James F. Meenaghan - Sonntag Academic Pavilion Dr. and Mrs. Randall Porter - Sonntag Academic Pavilion Dr. and Mrs. Nicholas Theodore - Sonntag Academic Pavilion Mrs. Wallace Thorne - Center for Adaptive Brain Function US Airways - Helmet Your Head Prevention Program Valley Anesthesiology Consultants, Ltd. - Pediatric neurogenetic disease research Mr. Randy Winegard - Ruptured aneurysms Women’s Board Special Project - Sonntag Academic Pavilion Multi-Year Commitments: Joan and Jerry Colangelo - Bipolar research Mr. and Mrs. Bruce T. Halle - Diane and Bruce Halle Neuro-Oncology Research Lab F. Francis Najafi Family Foundation - Neurosurgery research Since it began in 1965, the Barrow Ball has raised $38.5 million for Barrow. Jane Edmunds is the 2009-2010 chairman of the Women’s Board.
Celebrity Fight Night XVI
Stars and athletes from around the country converged on the J.W. Marriott Desert Ridge Resort & Spa in Phoenix for Muhammad Ali’s Celebrity Fight Night XVI. The event raised $5 million for the Muhammad Ali Parkinson Center at Barrow and other charities. Grammy award-winning producer and American Idol judge Randy Jackson made a special introduction of Muhammad Ali, who celebrates his 50th year on the world stage in 2010. The Muhammad Ali Celebrity Fight Night Awards are presented annually to acknowledge leaders in the sports, entertainment, and business communities who best represent the qualities associated with the Champ and his fight to find a cure for Parkinson’s disease. This year, producer Jerry Weintraub received the Muhammad Ali Celebrity Fight Night Humanitarian Award; race-car driver Danica Patrick received the Sports Achievement Award; and businessman and philanthropist Walter Scott Jr. received the Entrepreneur Award.
Top photo, Barrow Ball: Ruth Lavinia, Mary Ellen McKee, and Laurie Florkiewicz. Bottom photos, Celebrity Fight Night: Randy Jackson and Muhammad Ali; Sam Moore; and Reba McEntire.
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David Foster directed the show, which included performances by singers Glenn Frey, Michael Johns, Charice, The Canadian Tenors, and Sam Moore, and comedians Chris Tucker and Melissa Peterman. Reba McEntire, who served as emcee for her fifth year, performed a four-song set. The event also featured cocktails, a silent auction, an elegant dinner, and a live auction with such one-of-akind luxury items as dinner at Reba McEntire’s Beverly Hills home, which went for $300,000 each to three lucky bidders; a vacation in Tuscany and dinner with Andrea Bocelli, which went for $500,000; and dinner with Billy Crystal and Robin Williams, which sold for $300,000 with a matching donation of $250,000 added to the winning bid to help the children of Haiti. Celebrity Fight Night Foundation is a non-profit organization that was founded in 1994 by Jimmy Walker. Sponsors of this year’s event included CA, Climatec, US Airways, Casino Arizona, FedEx, Flight Options, and Elite Home Technology. More information is available at www.CelebrityFightNight.org.
Lou Grubb Friends Fore Golf
Photos from top, Celebrity Fight Night: Chris Tucker; Reba McEntire; Danica Patrick with Muhammad and Lonnie Ali; Lou Grubb Friends Fore Golf live auction: Roger Maxwell.
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The 37th annual Lou Grubb Friends Fore Golf (LGFFG) charity event, held April 22 and 23 at the Scottsdale Plaza Resort and McCormick Ranch Golf Club, was a success, meeting the fundraising goal of more than $400,000 for St. Joseph’s Hospital and Medical Center and Barrow Neurological Institute. The event included a kick-off dinner and auction on Thursday evening at the Scottsdale Plaza Resort, emceed by Mark Curtis of 12 News and Lou Grubb’s son-in-law, Dennis Sage. The dinner was followed by an 18-hole tournament and awards dinner the next day at McCormick Ranch Golf Club. A highlight of this year’s festivities was the presentation of the Lou Legacy Award, created and presented by Cathy and Tom Reahard, and given to Lou Thursday evening as a small thank-you for his friendship, support, and dedication to improving the lives of patients at St. Joseph’s and Barrow. The live auction featured nine fabulous packages. In addition, a silent auction before dinner included dozens of items donated by vendors who have worked
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with LGFFG for years and came through, even in these difficult financial times, to make a contribution. Bondurant Racing School donated an exciting raffle item, and Dennis Sage Home Entertainment supported the event with many key prizes. Golfers at Friday’s event took home antique hickory golf clubs made into trophies and donated by Lou and his wife, Evelyn. Heritage Pewter created a bronze image of Lou that was used in the Lou Legacy Award and and also for bag tags given to golfers. And, after hearing about Lou and his contributions to the hospital through LGFFG, Heritage Pewter donated all of this to the tournament. Lead sponsors CBIZ and the Arizona Diamondbacks each provided gifts to the golfer goodie bags. New sponsors included the Pierre and Sue Ellen Leroy Charitable Foundation, Superstition Mountain Golf, Louis XV Jewelers, and LifeLock. The Foundation staff thanks the planning committee, 85-plus volunteers, and participants who worked to make this year’s event a success.
Lou Grubb first came to Arizona from Long Island in 1945 because of his asthma. He had $27 in his pocket when he stepped off the train in Phoenix. By 1972, Lou had begun building what would become an admired automotive empire, based on the Golden Rule of treating the customer the way he would want to be treated. In 1986, Lou’s life took an unexpected turn. He was playing golf when an aneurysm in his brain ruptured. Doctors at the hospital where Lou was taken held out little hope for his survival. His wife, Evelyn, insisted that Lou be transferred to Barrow, and it was there that Lou and Dr. Robert Spetzler’s lives intersected. Lou’s medical crisis inspired him to begin donating proceeds from his annual golf tournament to Barrow Neurological Institute. To date, the tournament has raised more than $4 million for the hospital. ■
Photos from top, LGFFG: Lannie Crudup, Eric Lee, Jason Cowans, and Gordon Hawkins; Carol James, Gayle Barker, Joanne Springrose, and Scottie Button; Tom Reahard and Robert Spetzler, MD; Eric Lee and Sue Ellen Leroy.
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by Sally Clasen
off-centered experience October event will offer samples of fine ales and food and raise funds for brain cancer research, education n the surface, beer and brain cancer aren’t subjects that seem to go together. Yet, Louis Dolgoff hopes that the fine art of one will help bring attention to the other in an annual event that will honor his late wife, Laurie, who passed away in August 2009. Dolgoff, a craft beer expert and promotions manager for Dogfish Head Craft Brewed Ales, has planned events for years but never thought he’d be coordinating a fundraiser to benefit brain cancer education and research. Three years ago, however, this cause became personal. Laurie, his spouse of 30 years, was diagnosed with a Type IV glioblastoma multiforme brain tumor in March 2007. At the time, Laurie was the manager of the Escada store at the Biltmore Shopping Plaza. “She was having horrible headaches,” Dolgoff says. “We thought they were migraines but soon learned otherwise.”
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In April 2007, Laurie underwent surgery at a local hospital to remove the mass and was then referred to Barrow neuro-oncologist Lynn Ashby, MD, for follow-up care. Though the prognosis was not good—usually those with this stage of the disease don’t live more than a year—the Dolgoffs were impressed and comforted by Dr. Ashby’s approach to Laurie’s case. “Dr. Ashby gave us hope. We never felt like Laurie wasn’t going to live very long or that she was ever in a hospital. She lived 2 1⁄2 years longer than we expected. The care provided by Dr. Ashby and our experience at Barrow was great,” Dolgoff says. Laurie’s treatment included experimental radiation therapy at the University of Wisconsin-Madison, which Dr. Ashby recommended. “Laurie was always positive. She only complained once—that she had let Dr. Ashby down, ” says Dolgoff.
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Brain cancer accounts for 20,000 deaths per year in the U.S., and glioblastoma is the most common and malignant brain tumor in adults.
Shedding light on brain cancer
Dolgoff believes that the pairing of fine ales and food is the perfect platform to shed light on a type of brain cancer that he says flies somewhat under the radar. “We heard a little about glioblastoma multiforme tumors in the press after Sen. Ted Kennedy died from the disease, but since then there hasn’t been much attention on the subject, ” he says. “So many are affected by this, directly and indirectly.” With his knowledge of fine ales and his marketing background, Dolgoff intends to create the premiere craft beer event in the country while raising awareness about brain cancer in a classy way. “Craft beer has many complexities, much like wine,” he says. He emphasizes it’s not a beer festival but rather an opportunity for those interested in craft brews (ales produced by breweries and sold in limited quantities) to gather for a taste of flavor in a celebratory toast to his wife. “Except at this gathering, you won’t have to worry about red or white,” he adds. The aptly-named Off-Centered Experience will be held at the Scottsdale Plaza Resort on Saturday, October 2, and will include samplings of several rare beers from various breweries, including 25 specialty selections donated by Dogfish. The event will also feature gourmet food, unique entertainment—rockabilly, garage, and marching bands; belly dancers, sword swallowers, and fire-eaters; live art auction and raffles; short films; and a pro-am contest for home brewers.
“It will be set up like a party with something for everyone,” explains Dolgoff of the colorful lineup. “Nothing has been done like this in the brewing world. It will be a good-feeling event.” It’s a party theme Laurie would appreciate, he says. “She loved beer— but a good beer. And she loved the craft beer community. Many in the industry knew her, so it makes it easier.” The Off-Centered Experience will help kick off fundraising efforts to develop a dedicated brain tumor center at Barrow and launch membership in Beer for Brains, a foundation Dolgoff has set up in Laurie’s memory. The foundation will enable him to continue to educate the public about brain cancer. “She was not only my love but my best friend,” Dolgoff says. “I’d give my arm to have her back. I promised her I would raise money every year for brain cancer research. If I can do this, then I’ll feel like I’ve accomplished something. The Off-Centered Experience and Beer for Brains foundation will help support that goal. It’s a gift to Laurie and Barrow.” ■
Planning a colorful lineup
Off-Centered Experience
October 2 Scottsdale Plaza Resort Sponsored by Dogfish Head Craft Brewed Ales
Benefiting brain cancer research and education at Barrow Neurological Institute • Samplings of rare beers • Gourmet food • Rockabilly, garage, and marching bands • Belly dancers, sword swallowers, fire eaters • Live art auction • Raffles • Short films • Pro-am contest for home brewers Information: 602-406-3041
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happy campers Benefactor funds speech therapy camp at Barrow
t was the first summer camp most of these 12 kids had ever attended—and it was designed just for them. Here, no one teased them about the way they talk or about the scars on their faces. Instead, the Happy Campers Speech Camp made these children feel safe and, best of all, normal. The Happy Campers Speech Camp at the Barrow Children’s Cleft and Craniofacial Center provided intense speech therapy—disguised as fun activities— to children, ages 5-11, with severe speech problems due to cleft lip and palate. The six-hour-a-day camp began on June 7 and ended June 18. Each day included playtime, a creative project or craft, lunch, sport/motor activity time, board games, speech drills, and a session with a psychologist to discuss issues like teasing and self-esteem. For speech pathologist Deborah Leach, MS, CCCSLP, the camp was a 10-year dream. “I’ve watched kids born with craniofacial disorders grow up. I’ve seen how long it takes them to make progress,” she says. “And I’ve thought, ‘If I could just have these kids for a couple of weeks, I think I could make a lot of progress with their speech.’” Leach’s dream came true after Shelby Butterfield, a member of St. Joseph’s Foundation’s Board of Directors, watched a video about the craniofacial center during a tour of the hospital. In the video, the children talked about how they feel when people can’t understand what they’re trying to say and when other kids tease them. “She was so moved, she wrote a check that day,” Leach says. Butterfield’s contribution made it possible for all 12 children to attend the camp at no charge. “Every parent was overwhelmed with gratitude, every single parent,” Leach says. The children were equally excited about the firstyear camp, says Leach. Some woke their parents at 5 a.m. to go to camp, and others didn’t want to leave at the end of the day. They were especially interested in the tickets they could earn throughout the day for “good speech”—tickets they used to buy toys.
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Cleft lip and palate is the most common birth defect of the face. It occurs when the gaps in an unborn child’s lips and palate do not close as they normally do. A child with cleft lip and palate typically undergoes six to 10 surgeries, along with speech therapy and psychological counseling, between birth and 21 years of age. Eating problems, speech difficulties, and selfesteem issues are common among these children. Assisting Leach at the Happy Campers Speech Camp were Kelli Frisch, MS, CCC-SLP, speech pathologist; Carolyn Garrison Howard, PhD, psychologist; Kristen Bakalis, Child Life specialist; and five speech pathology graduate students from Arizona State University. The Barrow Children’s Cleft and Craniofacial Center is the only accredited craniofacial program in the Valley and the only program of its kind in the Southwest. The center cares for about 6,400 children, ages 0-21. Patients come from throughout Arizona, as well as from parts of Utah, Colorado, New Mexico, and Texas.
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Beads of Courage presented a warrior doll workshop at the Happy Campers Speech Camp. Photos clockwise from large center shot, Deborah Leach gives Chris Ortega a hug; Lily Vaske shows off her warrior doll; Kelli Frisch helps Lucas Howard; Leach talks to Cameron Stefl about his doll; ASU graduate student Marissa Stoltzfus admires Jordan Camareno’s doll. Before the Beads of Courage workshop, the campers played Go Fish (Chris Ortega, Marissa Stoltzfus, Mario Sanchez, and Jordan Camereno).
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st. joseph’s amazing Patient stories from the files of Barrow Neurological Institute White Walls of Misery by Valerie Portolano
Valerie Portolano won first place in non-fiction among eighth graders in the 2010 Quest Storymakers Middle School Writing Contest for the following essay:
have been to more hospitals than most children in all my schools put together. I have suffered and lived through thirty-nine hospitalizations. I was born differently than everyone else. You can't tell by looking at me that I have lived through fifteen surgeries, hundreds of IVs, countless stitches, and pain that you cannot imagine. I was born with hydrocephalus, Chiari malformation, pseudotumor cerebri, scoliosis, plus I am hearing impaired, and anemic. Hydrocephalus is something that, until recently, if you survived, you were almost always brain damaged, paralyzed, or in a hospital bed for life. You couldn't function from all the invasive procedures that would have been necessary to survive. In the 1950s, before the invention of the more modern shunt, the original shunt went through your heart, into your stomach. Drilling your head was a daily necessary evil; it is much rarer these days, though I have had to live through it. Most children with hydrocephalus did not make it past five years of age. The doctors in New York had "run" out of options for me. My mother would not accept my former doctor's words that there was nothing anyone could do for me anymore. At night, when I was restlessly sleeping nearby, she would search the internet for someone who could help me. She had seen Dr. Harold Rekate speak on television, and on Christmas Eve 2001, she emailed him, begging him for his help. Less than twenty-four hours later, he emailed her back, telling her he could solve the mystery of what was wrong with me. True to his word, Dr. Rekate did save me. I stayed with my parents in a Ronald McDonald's Charity House for six weeks while I recovered from the surgery he performed. While there, my mom met the man who would later sell us our house here. She told my father when we were about to leave, she wasn't leaving behind the man who could save her daughter. My dad said we had everything in New York, and my mom replied, we don't have Dr. Rekate.
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Valerie Portolano When we arrived home, my parents rushed to get ready to move to Arizona. They sold my mother's childhood home, left behind her family, their friends, and moved clear across the country into the unknown, to make sure I would stay healthy. I, for the most part, have. If I close my eyes and focus, I am back in New York, a scared little girl, still hearing the blank, annoying, consistent, "beep," "beep," "beep," of the pulse ox machine telling the nurses that my pulse is still beating, my heart is still doing its job. I can feel my IV, delivering the medicine I need. Pain meds, to numb the unbearable pain I feel from whatever surgery I just went through, more meds so I won't vomit, if I do I will dehydrate my already weakened body. I can see my father sleeping in the stiff, lumpy chairs that hospitals are renowned for. He is sleeping, exhausted from worry and waiting. He has stayed up with me most of the night, watching "Beauty and the Beast," but he can no longer stay awake. His head is lolled to the side, hanging, dark circles are permanent visitors under his eyes, and his mouth is in a thin line. He is subconsciously waiting to hear the soft, sturdy footsteps of the nurses doing their rounds.
I remember how I wished I could join him in the land of slumber, but my mind refused to stop running, trying to escape the unrelenting pain that had gripped my frail body and refused to let go. I knew as soon as I finally fell asleep from exhaustion, the nurses would be there to take my blood again. It was the topic of many discussions that the doctor would tell the nurses to draw blood at that unholy hour of the morning. Now, though if we do have those discussions, they no longer bring me pain. Instead they bring me joy and gratitude, for I not only just lived, but I am living to the fullest. I write all the time, it is my passion. I act in plays, or do the lights. I read on a college level. I am told I am sweet, kind, bright, passionate, and to my parents, their gift from God. I thank whatever higher being there is out there for giving me my life, which was saved by three people: My parents, who would do what needed to be done, who would not give up, because they loved me. For Dr. Rekate, for taking a chance on a little girl who needed his help, for saving her the first time, and time and time again. That little girl thanks him for giving her the other doctors on her team; they all play a part in keeping her healthy. And lastly, to the little girl surrounded by the sounds of the white walls of the hospitals she was so frequently in, who didn't give up on herself. I thank her for letting me become who I am, a healthy, happy, fourteen year old survivor. Sleep well, my friend. ■
Todd Crutcher by Sally Clasen
n December 24, 2009, Todd Crutcher wasn’t ready for the holidays, but he received an early present in the shape of a lock-picking angel. Crutcher, director of business development for Bob Bondurant School of High Performance Driving, was preparing last-minute Christmas gifts inside his home office in Chandler, which was locked to prevent his sons—Austin, age 8, Dylan, age 5, and Mason, age 16 months—from discovering what he was doing. The last thing he remembers is working on some digital pictures that he was going to wrap. He also remembers having a headache that morning but shrugged it off to holiday stress and anticipation. Two weeks later, the 36-year-old woke and learned he had had a seizure, the first in a series of events that included a quick-acting son, multiple health problems, and a challenging road to recovery.
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Todd Crutcher with his son, Austin Around 4 p.m. that day, Austin heard a crash in his father’s office and attempted to get his dad’s attention. When Crutcher didn’t respond, Austin picked the lock—a skill he had honed trying to keep his siblings out of his bedroom. He saw his father lying on the floor, unresponsive and with blood on his face. “He thought I broke my jaw because I was bleeding out of the mouth,” Crutcher says. “Dylan was observing this, but, thank God, Mason was asleep in his crib.” Austin then made a cell phone call to his mother, Kimberly, who was three miles away doing errands. She called 9-1-1, and paramedics responded quickly and took Crutcher to Chandler Regional Medical Center. There, the hospital staff ordered a CT of Crutcher’s brain and determined he needed to be transported to Barrow Neurological Institute. Additional brain scans at Barrow confirmed Crutcher had a hemorrhagic lesion in the right frontal lobe consistent with a cerebral cavernous malformation (CCM). A CCM is a cluster of small blood vessels in the brain that are enlarged and irregular. The thin walls of a CCM make it prone to leaking blood into the surrounding tissue. Surgery was scheduled on December 27 to correct Crutcher’s CCM, but on Christmas night, he had difficulty breathing due to fluid on his lungs, so he was intubated and put into a coma for nine days to stabi-
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lize his system. He also lost significant kidney function and underwent five days of dialysis. “I was given a 30to 40-percent chance of living,” Crutcher says. On Jan. 4, Crutcher was removed from the induced coma, and things started looking up for the racing industry professional. “My lungs were functioning at almost 100 percent, and kidneys were almost back to normal,” he says. Yet, surgery to fix the CCM was still elusive. “Over the next few days, I started experiencing some sort of ICU psychosis.” He also learned he had fractured his T12 vertebrae during the fall in his office and started to grasp the severity of his health status. “At this point, I finally knew what was going on, and the reality of everything was starting to set in,” he says. “My wife brought my kids to see me. I remember looking at them and their pictures on the walls and thinking that I could not leave them.” He spent a week in neuro-rehabilitation doing speech, occupational, and physical therapy to improve his strength and correct development problems caused by his injuries. Some people with CCMs—experts estimate 25 percent—will never experience any related medical problems, says Alim Mitha, MD, a cerebrovascular/skull base fellow in neurosurgery at Barrow. Others will have serious symptoms such as seizures (most commonly), headaches, paralysis, hearing or vision changes, and bleeding in the brain (cerebral hemorrhage). CCMs are rather unusual, according to Dr. Mitha, who says prevalence is 1 in 200 in autopsy series. It’s also unclear why they occur. “CCMs typically present between the second and fifth decades of life, but can occur at any age with no gender predominance. Up to 20 percent of cases are familial, and these tend to Kim and Todd Crutcher with their be patients with more than three boys: Mason, Dylan, and one lesion. Multiple genes Austin. have been associated with the development of cavernous malformations including CCM1, CCM2, and CCM3.” Crutcher, who was released from the hospital on Jan. 14, was given the option of taking an anti-epileptic medication the rest of his life to manage seizure recurrence or surgical intervention to treat the CCM’s effects.
A look at CCMs
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“Often, more than one medication is required for seizure control, and significant side effects can be associated with these medications,” Dr. Mitha says. “The chance of success for treating his seizures by removal of the cavernous malformation was good, at roughly 80 percent. Since his lesion was symptomatic and in a location that was relatively easily accessible, surgery was the recommended treatment.” On Feb. 1, a stabilized Crutcher returned to Barrow where Robert Spetzler, MD, director of Barrow, and Dr. Mitha removed the CCM in a two-hour procedure, a right frontal craniotomy for resection of the cavernous malformation. “An incision was made behind Todd’s hairline, and a high-speed drill was used to remove a window of bone from his right forehead. The thick, leathery covering around his brain [the dura] was incised and the lesion was removed using fine dissecting instruments with the aid of an intra-operative navigation system and microscope. After successful resection of the lesion, his bone was replaced with titanium plates and screws, and the incision was closed,” Dr. Mitha explains. “When I woke up that day, I knew I was going to be all right since I could see, read, and remember thoughts,” Crutcher recalls. “After what I went through, brain surgery was a piece of cake.” While he has lingering back pain from the vertebrae fracture, Crutcher is feeling well enough to work parttime, but he must be monitored on an ongoing basis. “Infrequently, CCMs may reappear in the same location or develop in other parts of the brain. For this reason, patients are followed with repeat MR imaging,” Dr. Mitha says. The details remain a mystery to Crutcher, who says even to this day, he has no recollection of what happened from the time he had the seizure in his office to waking up two weeks later at Barrow. His wife, Kimberly, has filled in him on the trail of events and chronicled her husband’s medical journey online. He admires and praises her support, as well as other family and friends for their concern. “If it wasn't for her love, I don't know if I would have made it. Everyone reading Kim's postings on Caringbridge.org fell in love with her the way I love her,” he says. Crutcher also gives special thanks to the doctors and nurses at Barrow who “saved my life,” as well as the Bob Bondurant School of High Performance Driving, Arizona Community Church, and Momentum Salon & Body for their fundraising efforts held during his recovery. ■
Completing the CCM story
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raffle rewards Biannual fundraiser benefits patients at St. Joseph’s, Barrow lthough Zoe Lemieux sits on her own and is contemplating crawling, like a normal eight-monthold baby, she had anything but a normal start in
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life. When Zoe was born, she was nearly lifeless due to a kink in her umbilical cord. Her brain was not getting enough oxygen, and she was at risk of brain damage or even death. Fortunately, Zoe’s doctor quickly transferred her to St. Joseph’s Hospital. There, newborn and brain experts in the Neonatal Intensive Care Unit (ICU) treated Zoe with hypothermia, a therapy shown to help preserve the brain after hypoxia, or inadequate oxygen. As part of the therapy, doctors chilled Zoe’s body temperature to 92 degrees Fahrenheit over the course of three days, gradually warming it back to a normal temperature. Zoe is now a healthy and bright-eyed baby, and her parents say she shows few signs of her difficult start. The Neonatal ICU where Zoe received care is just one of the many areas at St. Joseph’s and Barrow that have received critical funding from the Health & Wealth Raffle. The Spring 2010 Health & Wealth Raffle wrappedup April 1, and it was one of the most successful raffles in the past three years. Significant funds were raised for research, medical education, and patient care at St. Joseph’s and Barrow. “As I walk through the halls of St. Joseph’s, I see many, many areas that have been touched by raffle funding,” said Mary Jane Crist, chief executive officer, St. Joseph’s Foundation and Barrow Neurological Foundation. “Heath & Wealth Raffle funds have given our hospital the opportunity to recruit highly skilled doctors, launch new units and programs, bring in the latest and most advanced technology, and invest in promising new research projects.” To date, the Health & Wealth Raffle has raised nearly $50 million for the hospital. The raffle has the power to raise large amounts of funding at a rapid pace because participants can win amazing prizes, while also supporting a good cause.
Zoe Lemieux is now eight months old. Nearly 115,000 prizes have been awarded to raffle participants, including 26 homes, more than 350 trips, and an estimated 420 vehicles. Hundreds of St. Joseph’s employees contribute to the hospital by purchasing a raffle ticket each season. In fact, more than 75 employees won prizes in the Health & Wealth Raffle during the past year, including several who have won cars and cash. “I look for the sizzle when shopping for Health & Wealth Raffle prizes,” said Kathy Rice, executive director of the Health & Wealth Raffle. “The more attractive the prize, the more money we can raise for the hospital, and at the end of the day, it’s the dollars going back to the hospital that matter most.” The 15th Health & Wealth Raffle will launch this August. More than 4,500 prizes will be up for grabs, including a unique grand prize that will take the winner to new heights. For more information about the Health & Wealth Raffle, visit www.HealthWealthRaffle.org. To receive a Health & Wealth Raffle brochure by e-mail, please visit www.HealthWealthRaffle.org and click the “Sign Up” button. ■
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benefactor briefs
Parkinson’s Network of Arizona donates $30,000 to the MAPC The Parkinson Network of Arizona recently donated $30,000 to the Muhammad Ali Parkinson Center (MAPC) to support the center’s programs and services. “We’re very grateful for their generosity and commitment to the cause,” says Abraham Lieberman, MD, director of the MAPC. “Support from the Parkinson’s Network of Arizona helps us serve the growing number of patients coming to our center not only from Arizona, but also from Colorado, Wyoming, Utah, California, and Mexico.” PNA was established in 2006 when a small group of individuals whose lives had been touched by the MAPC came together to think about ways that they could help the center. The group became an affiliate chapter of the National Parkinson Foundation in December 2006. PNA holds several events each year to raise funds for the MAPC, including the Walk the Fight Walk-AThon and the Knockout Parkinson Jazz & Blues Festival.
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The Muhammad Ali Parkinson Center is committed to providing excellence in treatment, research, and education for patients and families affected by Parkinson’s disease and other movement disorders regardless of ability to pay. For more information about how you can support the Muhammad Ali Parkinson Center, please contact the Foundation at 602-406-3041. For more information about the Parkinson Network of Arizona, visit their website at www.ParkinsonAZ.com
The next PNA event is the
Knock Out Parkinson’s Jazz and Blues Festival and Brunch scheduled for November 7th at the Scottsdale Plaza Resort. Watch www.maprc.com and www.ParkinsonAZ.org for details.
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2010 SSBTR walks raise $239,000
Five thousand people converged on the campus of Arizona State University for the 9th Annual SSBTR Phoenix Walk-A-Thon. Because of the growth of the popular event, Students Supporting Brain Tumor Research moved the walk-a-thon to ASU. Honored guests included Jason Barry, award-winning reporter from KPHOTV Channel 5; the Phoenix Suns Gorilla and Suns Dancers; brain tumor survivors; and families and friends who walked in memory of a loved one who has passed away from this disease. The First Annual Northern Arizona Walk was held this year, while the University of Arizona Walk-AThon celebrated a second successful year. The three walks raised a total of $239,000, which will be donated to Barrow and other organizations involved in brain tumor research. The 2011 SSBTR Phoenix WalkA-Thon will be held on February 26 at ASU.
Starlight Fun Center™ given to Barrow for pediatric patients
The Catholic Community of the Blessed Sacrament Scottsdale and Starlight Children’s Foundation have contributed a Fun Center™, featuring a Nintendo Wii™, DVD player, and a Sharp AQUOS™ LCD TV, to Barrow Neurological Institute for pediatric patients. Fun Centers roll right up to the side of young patients’ beds or anywhere in the hospital, making them perfect for children during hospital stays or while awaiting surgery, outpatient clinic treatments, or emergency room care. Fun Centers uniquely counter the isolation and fear often experienced by sick children. Starlight Children’s Foundation™ was founded in 1983 to help seriously ill children and their families cope with pain, fear, and isolation through entertainment, education, and family activities. Starlight’s programs have been proven to distract children from their pain, to help them better understand and manage their illnesses, and to connect families facing similar challenges so that no one feels alone. Each year, Starlight Children’s Foundation Arizona touches the lives of more than 50,000 children and their families statewide. To learn more about the magic of Starlight Children’s Foundation Arizona or to volunteer, visit www.starlight.org/arizona.
Fountain Hills support group gives Pennies for Parkinson’s
The Fountain Hills Parkinson Support Group donated proceeds from their Pennies for Parkinson’s campaign to the Muhammad Ali Parkinson Center (MAPC) at Barrow. “The Ali Center has been very helpful to our group since we first organized about three and a half years ago,” said Bruce Florence, 79, the founder of the support group. “The center assisted us in getting organized and has been terrific in providing speakers and instructors. Today we are giving them a check for $1,406.92. It’s our way of helping support the great work they do.” More than 90 people have attended the Fountain Hill’s Parkinson Support Group since it was established. Its Pennies for Parkinson’s (Until We Find a Cure) project has given a total of $3,602.88 to MAPC. “We have been delighted to help the Fountain Hills group build their educational activities, and we really appreciate their support,” says Margaret Anne Coles, program manager.
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U P D A T E
research update Barrow researchers receive more than $2.2 million in NIH funds for nicotine studies
Four scientists at Barrow Neurological Institute at St. Joseph’s Hospital and Medical Center have been awarded more than $2.2 million from the National Institutes of Health (NIH) to research the effects of nicotine and develop new tobacco-related drug therapies. The grants will fund three separate research projects in the next several years. Ronald J. Lukas, PhD, vice president of research at Barrow, is one of the world’s leading experts on nicotine and has spent much of his research career studying its impact. Lukas’s research lab, shared by Paul Whiteaker, PhD, is the main recipient of the funding. The Barrow laboratories of Jie Wu, MD, PhD, and Yongchang Chang, MD, PhD, also will receive funding from the grants. Lukas said these Barrow-led projects also will benefit a number of other researchers around the country who will receive collaborative NIH funding of more than $5 million for their participation in the studies. The newly-funded Barrow studies will investigate
how nicotine may reduce depression, how it creates addiction, and how nicotine addiction is related to lung cancer. “These studies have implications for nicotine dependence, tobacco addiction, lung cancer, and mood disorders,” said Lukas. “In total, these NIH grants mean more than $7.2 million in funding that would not be possible without the participation of Barrow, nor would our funding be possible without the participation of our colleagues in a world where collaborations are the best way to move forward and be competitive for external funding.”
Researcher reports that slow breathing reduces pain
Research performed by Arthur “Bud” Craig, PhD, has shown that controlled breathing at a slowed rate can significantly reduce feelings of pain. Chronic pain sufferers, specifically fibromyalgia (FM) patients, also reported less pain while breathing slowly, unless they were overwhelmed by negative feelings, sadness, or depression. The research was done in collaboration with investigators at Arizona State University and was published in PAIN, the refereed journal of the International Association for the Study of Pain. The findings offer an explanation for prior reports that mindful Zen meditation has beneficial effects on pain and that yogic breathing exercises can reduce feelings of depression. These results also underline the role that a person’s positive or negative attitude can have on their feelings of pain. The study involved two groups of women aged 45 to 65. One group was composed of women previously diagnosed with fibromyalgia, and the other group was “healthy controls.”
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During the trial, participants were subjected to moderately painful heat pulses on their palms. The heat pulses were administered while they were breathing at normal rates and when participants reduced their breathing rates by 50 percent. After each heat pulse, participants were asked to report their feelings three ways: how strong the pain was (pain intensity), how uncomfortable it was (pain unpleasantness), and how their mood varied (affect). The researchers analyzed the participants’ ratings of pain intensity and unpleasantness, and found an overall reduction in reported pain when the healthy control participants were paced to breathe slowly. However, fibromyalgia patients benefited from slow breathing only if they reported positive affect. “This fits with the idea that FM patients in general have low positive affect, or energy reserves. Those who do have some positive energy left in their ‘mental battery’ can use it to reduce pain by breathing slowly, just like healthy normals,” says Dr. Craig.
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Hypothermia research may benefit brain-injured athletes NFL players and other athletes who suffer serious or multiple concussions may benefit from ground-breaking research being conducted by scientists at Barrow. The scientists are developing a surgical technique that involves hypothermia in specific regions of the brain. Therapeutic hypothermia is a medical treatment that lowers a patient's temperature in order to help reduce the risk of injury to tissue. The endovascular intra-arterial cooling method being studied at Barrow rapidly preserves the injured portion of the brain and minimizes damage. Results from the studies, which are being led by Barrow’s director of Neurosurgery Research Mark Preul, MD, have been published in academic journals such as Neurological Research. “The ability to cool a specific region of the brain allows us to protect the tissue and avoid risk of damage to other organs that can occur with whole body hypothermia,” says Dr. Preul. “This work is targeted currently at severe injuries to the brain like massive strokes or trauma, but it also means we could be able
to offer a less invasive and specific approach to saving brain tissue. We’re working to develop ways to be more proactive about treating brain injuries like sports concussions that may have been under-treated in the past.” The filter-cooling unit technology is similar to renal dialysis, removing a volume of blood and replacing it with a cooled crystalloid solution through a catheter in the carotid artery. The rest of the brain and body maintain a normal temperature.The cooling process quickly lowers the metabolic rate of the tissue, protecting it from stress and further damage. “We’re encouraged by our results in the lab and believe it could translate into faster clinical response and improved outcomes for patients with brain injuries, including athletes, military personnel, and trauma patients,” says Dr. Preul.
MDA awards $450,000 to Barrow biologist
Fu-Dong Shi, MD, is one of 42 medical researchers who are receiving funding from the Muscular Dystrophy Association for research into neuromuscular disease. Dr. Shi has been awarded $450,000 to continue his groundbreaking work into myasthenia gravis. Including this grant, MDA has awarded Dr. Shi more than $1.1 million in scientific grant money since 2001. The grant is part of MDA’s ongoing commitment to funding research seeking treatments and cures for neuromuscular diseases affecting more than one million Americans. “Dr. Shi is an outstanding scientist whose contributions to the field of neuromuscular disease research continue to be impressive,” says R. Rodney Howell, MD, chairman of the MDA board of directors. In myasthenia gravis, the body’s immune system mistakenly attacks the place where nerve signals normally reach muscle fibers, leading to fatigue and crippling muscle weakness. This autoimmune disease can be
treated by general suppression of the immune system and other therapies. However, a treatment that specifically targets only the actions of the immune system that causes the disease would be highly desirable. Dr. Shi and his colleagues are focusing on Th17 cells, which recent research has shown to play a key role in causing or intensifying autoimmunity. All research grant applications to MDA are peerreviewed by MDA’s Medical and Scientific Advisory Committees and go through a rigorous evaluation process by world-renowned experts in neuromuscular diseases. Each year, about 500 researchers apply to MDA for research funding. MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS, and related diseases by funding research worldwide. The Association also provides comprehensive healthcare and support services, advocacy, and education. In the Phoenix area, MDA serves people affected with neuromuscular diseases at the MDA/ALS Center at Barrow. Shafeeq Ladha, MD, is director of the ALS Center. He and John Bodensteiner, MD, are codirectors of the MDA Clinic at Barrow.
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what’s happening around barrow Lonnie Ali appointed to panel advising President Obama
President Barack Obama has appointed Lonnie Ali, the wife of boxer Muhammad Ali, to the Commission for the Study of Bioethical Issues. The 10-person panel will advise Obama on issues related to advances in biomedicine and similar areas of science and technology. Lonnie Ali is an advocate dedicated to raising awareness of Parkinson's disease, which her husband battles. In 2009, they helped open the Lonnie and Muhammad Ali Pavilion at Barrow, which houses the Muhammad Ali Parkinson Center.
St. Joseph’s offers free driving assessments for seniors
The Injury Free Coalition at St. Joseph’s is conducting free driving self-assessments for seniors, age 65 and older, using the AAA Roadwise Review™. The computerized evaluation, which takes approximately one hour, is designed to increase older drivers’ self-awareness and general knowledge regarding driving-related declines. The driving self-assessment is for educational purposes only, and results are not reportable to any agency.
Ryan’s House, a respite center for children with life-threatening illnesses and their families, opened in March on the St. Joseph’s campus. Ryan’s house provides a welcoming, comfortable, and safe place for children to stay, thus giving their parents a short break from the stress of caregiving. St. Joseph’s provided the land for the new facility.
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It is known that older drivers have a higher risk of: • Being in a crash for every mile they drive. • Being in a crash at an intersection. • Not maintaining speeds/keeping up with traffic. AAA Roadwise Review™ assessments are conducted at St. Joseph’s each Monday between the hours of 9 a.m. and noon by appointment. Additional appointment times may also be available. An Injury Free Coordinator assists with the assessment. Call 602-406-3050 for info and an appointment.
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BNF Board of Trustees elects officers, approves six new members The Board of Trustees of Barrow Neurological Foundation has elected six new members to one-year terms and has approved new board officers for fiscal years 2010-2012. The following officers will serve from July 1, 2010, through June 30, 2012: •
Chairman - Patti Gentry, Principal/Designated Broker for Arizona Commercial Advisors
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Treasurer - Greg Anderson, CEO of Legacy Senior Housing and Development Company
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Vice chairman - Lisa Handley, Senior Vice President, Mid First Bank Secretary - Herman Orcutt, a retired architect
CEO/assistant secretary - Mary Jane Crist, CEO of Barrow Neurological Foundation and St. Joseph’s Foundation.
Six new members of the BNF Board of Trustees were elected to one-year terms: •
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Barbara Barone, President and CEO of Biltmore Advisors. Barone is the founder of Biltmore Advisors, Inc., an independent Arizona investment advisory firm. She has 30 years of experience in strategic investment and financial planning. Barone is active in the Center for Desert Archaeology, the City of Phoenix Civic Improvement Corporation, the Brinker Capital Advisor Council, and The Charter 100.
Shelley Ann Duane, President of Revelations Interiors. Duane was a psychotherapist and behavioral consultant at the Institute for Developmental Behavioral Neurology in Scottsdale until she retired in 2009. Besides running an interior decorating business, she is active in the community through membership in Arizona State University Women and Philanthropy, The Charter 100, and Friends of O’Connor House.
Catharine Bienvenu Fitch, Vice President, Investments for Raymond James & Associates, Inc. After teaching high school and junior college in the Atlanta area for 14 years, Fitch completed a twoyear internship with Shearson Lehman Brothers and began a new career in the investment field. She is a member of ARCS, a scholarship program for budding young scientists; the Arizona Planning Organization; and Women of Scottsdale. Barbara Greiner Glass, president of Barbara Greiner Glass and Associates. Glass has worked for more than 20 years in the insurance industry,
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specializing in corporate and individual insurance sales, and in the design, implementation, and management of insurance benefit programs. She is active in the community, volunteering for Social Venture Partners Arizona, Phoenix Children’s Hospital, and the Desert Botanical Garden.
Karl James, partner and managing director of Capital Commercial Investments, Inc., a privately held real estate investment firm. James has owned and managed real estate development, construction, and transportation companies throughout the U.S. He has partnered in more than 30 real estate companies and is currently working to develop Continuum in Chandler, a 152-acre science and technology park.
Patrick J. McGroder III, is a trial lawyer who specializes in catastrophic injury and wrongful death litigation. He has been selected as one of Arizona’s 10 best lawyers and is annually selected as one of the best 500 trial lawyers in America. McGroder is active in a wide variety of community organizations and has been honored numerous times for his work with the homeless and indigent.
Other members of the BNF Board of Trustees are Jane D. Alfano, Wayne S. Doran, Gee Gee Entz, Booker T. Evans, Lee Hanley, Linda Hunt, Mike Ingram, Guy Inzalaco, Stephen Lenn, Stanley W. Levine, Mac Magruder, Roy A. Patchell, MD, Tom Reahard, Anne Robbs, Dennis Sage, Robert F. Spetzler, MD, and E. Jeffrey Walsh.
Learn about planned giving at Write-A-Will Workshop
Barrow Neurological Foundation and St. Joseph’s Foundation are sponsoring a Write-A-Will Workshop on Wednesday, July 21, in the Mercy Conference Room at St. Joseph’s Hospital and Medical Center. The workshop will run from 9:30 a.m. until 11a.m. Michael King, a partner with Gammage & Burnham and long-time benefactor to St. Joseph’s Foundation, will lead the workshop. Reserve your spot today. Call the Foundation Office at 602-406-3041 or email Kathy.Kramer@chw.edu. Our office is open Monday-Friday, 8 a.m.-5 p.m.
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the transformational gift Making a remarkable impact on a non-profit by Robert Hopkins Vice President,
n the fund development business, the most widely read publication is probably The Chronicle of Philanthropy. It arrives on the doorsteps of tens of thousands of charitable organizations every other week. It’s 48 pages, give or take, packed with articles and statistics, covering every conceivable fact and figure and story about who gave what to whom, how much (and in what form), tracking campaigns from the smallest college to giant international agencies, and offering career guidance, job openings, and ads from every major consultant in the nation. It is, without question, a well-written, well-researched, and very well-read tabloid. It’s the gold standard, in my humble opinion. Each issue also contains a feature on “notable gifts” that were reported that week or month. These are the stories fundraisers salivate over. They are written without too much fanfare or hyperbole, but they do stand out. They are the stories of transformational gifts. The articles (usually toward the back of the paper) are not long and never attempt to intrude on the philanthropists responsible. They don’t need pages of narrative or glossy photographs. Like a diamond on black velvet, the coverage is, if anything, understated, given what these extraordinary gifts mean to an organization. The way fundraisers refer to the mega-gifts is usually “transformational,” and that is entirely accurate. What motivates an individual or a couple to make gifts such as these is as varied as one’s fingerprints. Some put their names on buildings (it’s the least the receiving institution could do), but more often the real motivation is to genuinely move the needle, to enable something to occur that simply would not, could not, without such a gift or investment in the institution they love. Colleges, universities, and medical schools are usually the recipients of gifts such as these, though there are notable exceptions, e.g., Ted Turner’s $1-billion pledge to the United Nations or the Bill & Melinda Gates
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Foundation’s gifts of $100 million+ to several causes around the globe. Very recently, the former CEO of Qualcomm in San Diego and his wife made a $75-million gift, in addition to their earlier gift of $110 million, to the University of California at San Diego’s medical center. It will, indeed, create an entirely new medical center campus. Patrick Soon-Shiong, CEO of Abraxis Bioscience, made a $65million gift to the St. John’s Hospital’s John Wayne Cancer Center in Santa Monica a few months ago. The
“More often, the real motivation is to genuinely move the needle, to enable something to occur that simply would not, could not, without such a gift or investment in the institution they love.”
largest gift ever to a hospital was made a few years ago by Denny Sanford, a gift of $400 million to a small hospital (well, it used to be small) in his native South Dakota. Whether in education, medicine, the arts, or social services, the operating margins of the majority of nonprofit organizations are quite small. In many cases, those margins don’t even cover the cost of depreciation. Taking on additional debt is increasingly dicey, so that leaves the extraordinary third option: philanthropy. It’s quite a wonderful thing. ■
Caring Heart A wonderful way to thank a special caregiver and support St. Joseph’s
as someone at St. Joseph’s touched your heart? Is there a nurse who treated you with deep compassion… a doctor who spent extra time with you… a therapist who made you feel special? e Caring Heart tribute gift is a great way to thank that person for exceptional care.
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Giving a Caring Heart is simple: You make a tax-deductible contribution to St. Joseph’s Foundation, Barrow Neurological Foundation, or e Congenital Heart Foundation. We notify your honoree of your gift and pass along your personal thanks. Your gift will give joy to the honoree, and it will help St. Joseph’s continue to give the best possible care. To learn more, call the Foundation Office at 602-406-3041. Or, visit one of our websites—SupportStJosephs.org, SupportBarrow.org, or SupportCongenitalHeart.org—and click on “Memorials & Tributes” on the left-hand navigation bar. Help us honor that special caregiver by giving a Caring Heart today!
CHW Arizona Barrow Neurological Foundation 350 W. Thomas Rd. Phoenix, AZ 85013-4496 www.SupportBarrow.org
Address Service Requested
Barrow Neurological Foundation respects your privacy. If you would prefer not to receive future issues of Barrow Magazine, please let us know by calling 602-406-3041 or emailing us at chw-azfoundation@chw.edu. Please provide your name and address exactly as it appears on the address panel of this magazine.
Without these gentlemen, there would be no Barrow Neurological Institute.
Charles Barrow’s gift in 1959 enabled John Green, MD, and St. Joseph’s to build Barrow Neurological Institute.
Philanthropy works.
Our job is to show you how. Please contact the Office of Philanthropy at St. Joseph’s Hospital and Medical Center (602-406-3041) for more information. P.S. We are very tax deductible.
Give online at www.SupportBarrow.org.
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