04 | Keeping Families Together

Our Home Care team does

“whatever it takes” to help

families care for their medically

fragile children at home.

08 | Research Changes Lives

Our immunologists are pioneering treatments — and seeking a cure — for primary immune deficiency diseases.

12 | A Guiding Hand

Patient navigators help families overcome language and cultural barriers to get the best care.

In this issue:

Connection

Summer 2009

02

From Where I Stand

Kathi Goertzen Journalist and nightly news anchor KOMO-4 TV, Seattle

It took only one visit to Seattle Children’s to touch my heart forever. I first came as a journalist to cover the story of a boy who received one of the first liver transplants performed in the Northwest.

My second visit was as a friend and volunteer.

Over the last 25 years, Children’s has given me more than I could ever give back. The greatest gift has been the honor of getting to know some very special patients and their families, whose courage and determination have become a beacon of light for me as I face my own health challenges.

And behind each of these children are the people who provide care. Their dedication and compassion isn’t scripted for any camera. It’s alive every hour of every day — whether or not anyone is watching.

Take Dr. Jim Olson. He’s quietly working on a type of paint that lights up cancer cells in tumors. One day, his work will transform the way brain-tumor surgeries are performed — helping people like me and countless others.

Children’s isn’t just a hospital for children. It’s an integral part of our region — a place that seeks answers for all of us.

I tell anyone who will listen to get involved! Give! Do what you can for Children’s. Without it, we would be far less of a community.

I am a cheerleader.

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Summer 2009

Connection Team

Jennifer FischExecutive Editor

David PerryVice President of Marketing and Communications

Susan BlakeDirector of Operations Foundation and Guild Association

Allison BroadgateMarketing and Communications Manager

Kathi Elliott Brand and Production Manager

feature story writers

Elizabeth AustenLisa BrihagenBrad Broberg

contributing writers

Elizabeth Austen Lisa BrihagenKeith Mack

design

Methodologie, Seattle

cover and feature photographer

Nancy LeVine

photographers

Del Abrejera Brian Baxter Paul Dudley Elliott Bay Productions Aileen Kelly Mirror Image Studios Mark Ruffo, PhD Tami Smith

connection

Vol. 11 no. 2© 2009 Seattle Children’s, Seattle, Washington. All rights reserved.

cover

Children’s Home Care team helps transplant patient Camren McDonough, 2, take part in everyday toddler activities like playing outdoors with mom, Melody, and Uncle Tyler, and even scraping his nose.

“ If we don’t stand up for children, then we don’t stand for much.”— Marian Wright Edelman

Contents

Feature Stories

04 | Keeping Families Together Our Home Care Services team does “whatever it takes” to help families care for their medically fragile children at home.

08 | Research Changes Lives Our immunologists are pioneering treatments — and seeking a cure — for primary immune deficiency diseases.

1 2 | A Guiding Hand Patient navigators help families overcome language and cultural barriers to get the best care.

In Every Issue

1 4 | What’s Happening at Seattle Children’s

1 8 | On the Scene

22 | Calendar of Events

23 | At a Glance

To learn more about Seattle Children’s, visit www.seattlechildrens.org. If you’d like to stop receiving Connection, please contact us at 206-987-2153 or at askus@seattlechildrens.org.

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Keeping Families Together Seattle Children’s has a “whatever it takes” approach to helping families care for their medically fragile children at home.

In many ways, Abby Graybill is a typical 5-year-old. Ask her what her favorite cartoon is, and she’ll tell you Scooby-Doo. Her favorite color? Pink. Her best friend? Thirteen-year-old brother Brent, who can always make her laugh.

But ever since Abby, her mother and brothers Brent and Riley were hit head-on by a negligent driver Sept. 15, 2005, near Shelton, Wash., she has been paralyzed from the neck down. She needs constant care and a mechanical ventilator to breathe. Her pink bedroom is filled with stuffed animals and computerized medical equipment.

Twenty years ago, children as medically fragile as Abby rarely lived at home. The life-sustaining equipment they depend upon was too bulky, and insurers wouldn’t pay for care and equipment in the home. It took sustained lobbying by parents — and significant technological improvements — to make it possible for such children to live safely at home.

For Abby’s parents, Tanya Miller and Jesse Graybill, the obstacles to caring for Abby at home were considerable. The learning curve for providing 24-hour care to Abby was steep — and Brent, Riley and Miller were still recovering from their own severe injuries.

Whatever it takes

Graybill and Miller’s determination to bring their daughter home was mirrored by providers at Seattle Children’s. And that’s where Home Care Services stepped in.

Home Care is the department within Children’s that does whatever it takes to help families successfully transition from hospital to home by providing education, expertise and any necessary child-sized equipment — for as long as it’s needed.

Miller was still in a wheelchair when she and Graybill began the three-month process of learning to operate and troubleshoot all of the equipment that Abby’s life would depend on at home: the portable ventilator to breathe for her, the suction machine to keep her airway clear, the cough-assist machine to reduce the risk of pneumonia, the oximeter to monitor pulse and oxygen saturation, the different pumps and tubing to supply nutrition and hydration.

As the date for Abby’s discharge approached, respiratory therapist Cheri Kuhnhenn worked with Miller and Graybill to set up a mini–intensive care unit in their home and teach them how to provide round-the-clock care.

(Above) For more than two years, respiratory therapist Cheri Kuhnhenn has provided regular in-home teaching and support to make it possible for Tanya Miller and Jesse Graybill to care for their daughter Abby at home. “Cheri’s much more than my equipment lady,” says Miller. “She’s very dear to all of us.”

(Left, on page 4) A head-on collision severed Abby Graybill’s spinal cord and left her a quadriplegic at the age of 2. Now 5, Abby is growing up at home, surrounded by the people she loves best — like older brother Brent.

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The right fit

When it comes to medicine and medical supplies, there is no such thing as “one size fits all.” More than 1,600 families rely on Home Care to find and provide just what the doctor prescribed, in a size that fits their child.

“Most home care providers don’t carry small enough cannulae (tubes) for the nose, or oxygen that can be calibrated down to the teeny tiny amounts needed by infants,” says Karen Rancich-Demmert, who leads the Home Care team. “We do.”

In addition to proper fit, portability is essential. “When I’m evaluating new equipment, I try to bring in the smallest, most efficient things with the longest battery life that we can possibly get, so families can have the most mobility,” says Jane McTevia, who supervises the Home Care respiratory

“ I run into roadblocks everywhere except with Children’s Home Care — they’ve been nothing but great.”

— Tanya Miller, Abby’s mom

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When Kuhnhenn discovered that all of the family’s belongings had been damaged while in storage, she and her husband Joel gathered furniture donated by her Home Care colleagues and delivered it to the family’s Kirkland home.

That kind of “above and beyond” behavior is typical of her experience with Home Care, says Miller. “I deal with a lot of nursing and government agencies to get the support we need for Abby, and I run into roadblocks everywhere except with Children’s Home Care — they’ve been nothing but great — from Matt Lange, who brings Abby’s oxygen every month, to Cheri, who brings us peace of mind.”

Kuhnhenn visits monthly to check Abby’s equipment, and always remembers to bring a caramel latte to Miller, who, because of her duties at home, rarely gets to enjoy a coffee out.

“They know they can call me anytime, but now they hardly ever do,” says Kuhnhenn.

Abby hasn’t had a single hospitalization in the two years she’s lived at home, which is unusual for patients as vulnerable to infection as she is. Kuhnhenn says it’s a testament to the skill her parents have developed.

“Tanya and Jesse have basically learned to be nurses and respiratory therapists.”

Because of a chronic shortage of skilled in-home nursing (which Children’s does not provide), Miller and Graybill have taken on all of Abby’s care themselves. They work 12-hour shifts — Miller takes days, Graybill takes nights — because a ventilator-dependent person requires constant care. Miller has no doubt that it’s worth it: “No one can provide the care for her that we can. Not even the doctors — and they’ve even told us that.”

therapists. “We really don’t want people to be stuck in their houses.”

Kelsie Hunter is part of a team of registered dietitians that provides phone support to more than 750 families caring for children with special feeding needs — everything from specialized bottles to individualized nutritional fluids for intravenous feeding.

“We don’t just ship it to them and expect that they’ll figure it out — we take the time to get to know them and what their needs are.”

Focus on mobility

Melody and Justin McDonough’s bags are packed. After 16 long days and nights at Children’s, they are almost ready to go. Thrilled that their 2-year-old son Camren’s liver was

Home Care provides Abby Graybill with two 12-pound portable ventilators — one at her bedside and another on her wheelchair — to enhance her mobility. Respiratory therapist Cheri Kuhnhenn (right) makes monthly visits to maintain them and check in with mom Tanya Miller (left). Just a few years ago, ventilators weighed upward of 35 pounds.

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After a transplant to treat a rare liver disease, Camren, 2, is ready to get back to regular toddler activities. But first, Home Care nurse Teresa Taylor (above, center) teaches Camren’s mother Melody McDonough to administer IV antibiotics. The little backpack (above, right) holds Camren’s formula and the machine that pumps it into his stomach — giving him the freedom to be on the move again, and even get an "owie" on his nose.

successfully transplanted, they are eager to transition to Ronald McDonald House, the first step toward going home to Helena, Mont.

But before Camren can be released, the couple must learn to safely administer IV antibiotics through the port in Camren’s chest and feed him through the tube in his nose.

Over the course of the next 90 minutes, Home Care nurse Teresa

Taylor coaches the couple through the first dose of IV antibiotics. Then, Taylor hands Melody McDonough a little black backpack that will hold Camren’s formula, pump and feeding tube. McDonough exclaims, “That’s it? So small!”

The backpack is little enough for Camren to wear himself and gives him a level of mobility that wasn’t possible when he was being fed intravenously.

Camren is still in the early stages of post-transplant recovery. His dad Justin McDonough sees Camren’s discharge from the unit and the mobility of the backpack as signs of freedom for Camren.

“For the past six months, he’s had someone within three feet of him 24 hours a day. This is a new life for him — he can be a normal kid.”

Derek Metzer and his team of drivers, including Jesse Potter (left), braved ice and snow during the storms of late 2008 to deliver essential medications and supplies when commercial delivery companies wouldn’t.

Home Care Delivers, No Matter What

Children’s Home Care Services ships more than 2,000 packages of medications and child-sized supplies every month, using overnight delivery services or its own small fleet of trucks.

When back-to-back snowstorms in December 2008 dumped a foot of snow on western Washington, UPS and FedEx stopped delivering to the hardest-hit areas.

The Home Care team triaged the most immediate needs: liquid oxygen, perishable medications, hydration and essential supplies. For more than two weeks during the holidays, Derek Metzer and his team of five drivers chained up the trucks, packed shovels and hand-delivered the necessary items to families as far as Sedro-Woolley and Olympia. For the hairiest locations, staff used their own four-wheel-drive vehicles, and often loaded up again at the end of the day to reach still more patients on their way home.

Metzer matter-of-factly sums it up: “When kids need it, we bring it.”

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Research Changes LivesFor half a century, immunologists at Seattle Children’s have worked to understand — and find the genetic causes of — primary immune deficiency diseases. Their pioneering work is advancing treatments and closing in on a cure.

Michael Vogel runs through his house screaming with delight, his 4-year-old cousin fast on his trail. At age 2, he is a social butterfly who loves to roughhouse and show off new skills with a flourish of his hand and a proud “ta–da!”

Michael’s antics give no hint to his fragile condition.

Out of the 30,000-plus genes in his body, one has a defect that stops his immune system from functioning

normally, making him susceptible to severe infections. That gene, called STAT3, is one of about 160 genes that researchers have linked to deficiencies in the human immune system. In Michael’s case, the mutation in his STAT3 gene causes him to have a rare condition known as hyper-IgE syndrome.

Immunologists at Seattle Children’s have been studying inherited and congenital conditions such as hyper-

IgE syndrome for more than 50 years. They’re called primary immune deficiency diseases (PIDD), and experts believe they affect at least one in every 500 people.

Immune deficiencies are characterized by unexplained patterns of recurring illness. The diseases that fall under this umbrella range from the severe — like the “boy in the plastic bubble” — to those that are merely annoying, like a lifetime of chronic

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Dr. Troy Torgerson’s lab at Seattle Children’s is one of only a few in the nation that can analyze proteins made by genes to determine whether children like 2-year-old Michael Vogel — and many adults — have primary immune deficiency diseases.

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low-grade sinus infections. Although PIDD can strike at any age, the most extreme of these diseases are typically found in infants and toddlers.

A family legacy

Michael is the third generation in his family to carry the defect in the gene that causes hyper-IgE syndrome. His grandmother, Roganna Barnes, has the same genetic defect and remembers her childhood as a dark time spent in sickness and isolation. Repeated pneumonias kept her out of school, and she endured many surgeries at Children’s to drain abscesses in her ears so she wouldn’t go deaf.

In 1966, when Barnes was 9, Children’s immunologist Dr. Ralph Wedgwood and his colleagues described her unusual mixture of symptoms in the medical journal The Lancet, and named her condition “Job’s syndrome” for the boils that covered her body like the biblical character Job.

Wedgwood recognized that children

with these puzzling symptoms were different. He suspected that their immune systems might not be able to fight infections normally, so he treated them aggressively with antibiotic and antifungal medications to protect them from infections. This allowed Barnes and others like her to grow into adulthood and have children of their own.

Wedgwood’s leadership in studying new treatments such as immunoglobu-lin replacement therapy — which uses blood plasma pooled from thousands of people to replace antibodies that are missing in many immune-deficient patients — cemented his reputation as one of the pioneers of pediatric immunology and began the legacy that has put Children’s at the forefront of immune deficiency research.

Unraveling the mystery

By the late 1970s, Barnes’ symptoms improved somewhat — though still plagued by frequent problems, she

did not seem to get as many severe skin or lung infections.

Unfortunately, her son David Vogel wasn’t as lucky. As a teenager in the mid-1990s, his health worsened. Vogel’s lungs developed cysts where staph bacteria thrived, and he was plagued by frequent bouts of pneumonia. Despite aggressive treatment, Vogel fought frequent dips in his health that left him unable to finish college or hold down a job for long.

In 2007, Drs. Troy Torgerson, Hans Ochs and members of their labs, together with two other groups, found the defect in the STAT3 gene that causes hyper-IgE syndrome. Their study — published in the New England Journal of Medicine — came out four decades after Wedgwood’s original description of the disease. Since the discovery, they’ve confirmed the STAT3 gene mutations in about 40 people who they suspected had hyper-IgE syndrome.

Identifying these gene mutations provides patients with concrete

Drs. Hans Ochs (left) and Troy Torgerson touch base with nurse practitioner Kathey Mohan at Seattle Children’s Immunology Clinic. Ochs’ national leadership studying primary immune deficiencies at the molecular level earned him the first endowed chair funded by the Jeffrey Modell Foundation, an organization dedicated to finding the causes and cures for primary immune deficiency diseases.

1 in 500people are affected by a primary immune deficiency disease.

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Drs. Andy Scharenberg (left) and Dave Rawlings are working to cure single-gene diseases of the immune system by developing customized proteins that can find defective gene sequences in cells, then cut out and repair them.

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diagnoses and opens the opportunity for early, aggressive treatment. It also holds great promise for advancing current therapies.

“We can now take the mutations found in the STAT3 gene, study them in cells and figure out how they cause disease,” says Torgerson. “We can see how the mutation affects the immune system, and more precisely target therapies to the specific clinical features of the disorder.”

Sadly, Vogel never had the opportunity to benefit from new therapies that might emerge from the discovery at Children’s. He succumbed to hyper-IgE syndrome at the age of 29.

The outlook for his son is different. Born just before Torgerson and Ochs discovered the STAT3 gene defect in his family, Michael developed pneumonia at 3 months of age.

Thanks to the early genetic diagnosis from a test developed in Torgerson and Ochs' lab, Michael has had the benefit of immunoglobulin replacement therapy and prophylactic antibiotics to reduce bacteria in his body and prevent infections from causing serious damage to his lungs. But all this medical management is

still just a control measure — and immunologists at Children’s are intent on a cure.

Harnessing the future, today

Children’s is unique among pediatric immunology centers, and our other clinics, because we diagnose and treat

children and adults with immune system disorders. Watching people contend with these diseases over time — Barnes has known some of the immunologists here for more than 40 years — inspires clinicians to develop the next generation of therapies.

Currently, Children’s researchers are working on two solutions to put an end to PIDD.

“ Immunology research is a priority at Seattle Children’s because immunity — the body’s ability to fight infection and disease — influences almost every medical illness.”

— Vicki Modell, co-founder of the Jeffrey Modell Foundation, an organization dedicated to finding the causes and cures for primary immune deficiency diseases. .

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To ComeJennifer Goldberg (with her kids Clara and Tate) knew she had a role to play in finding a cure for her son’s immune disorder, even if she wasn't a researcher. She now leads Children’s Gift of Immunity Guild and is a member of the Guild Association Board of Trustees.

When Jennifer Goldberg says her son Tate is one in a million, she’s not joking. Four hours after birth, he had a skin rash that wouldn’t go away. Pneumonia and enlarged lymph nodes followed. After visiting her pediatrician at least 15 times in one month, she and Tate were referred to Seattle Children’s, where she met Dr. Hans Ochs, an internationally known immunologist.

“It took only a day after meeting Dr. Ochs to find out that my son had chronic granulomatous disease,” remembers Goldberg.

Only one in every 1 million children has this immune disorder. Most experience a serious, life-threatening infection every four years. Tate, now 8, hasn’t been hospitalized since he was an infant. Goldberg credits the excellent care he’s received at Children’s for keeping him healthy, and she’s passionate about supporting the researchers here who she hopes will find a cure for her son.

After a talk by Dr. Andy Scharenberg about the promise of gene therapy in 2004, Goldberg overheard him say that he was building a specialized microscope because his lab didn’t have the money to buy one.

“I knew in that moment that I had a role to play,” she says. Today, Goldberg is president of Children’s Gift of Immunity Guild, a

growing group of 200 supporters committed to funding the future of pediatric immunology — one microscope at a time.

Becoming Part of the Solution

Bone marrow transplant can be a lifesaving option for patients affected by the most severe immune deficiencies. But current protocols were developed for patients with cancer and include high amounts of chemotherapy and radiation. Torgerson and Dr. Suzanne Skoda-Smith work in a unique partnership with bone marrow transplant specialists Drs. Lauri Burroughs and Anne Woolfrey to customize transplant protocols for PIDD sufferers to make them less toxic and more likely to be accepted by the patient’s body. The team expects to publish the results of some of their new protocols within the next two years.

Drs. Andy Scharenberg and Dave Rawlings are developing ways to correct the gene defects that cause PIDD. Their work — to develop customized proteins that can find defective gene sequences in cells, then cut out and repair them — sounds like the stuff of science fiction. But, based on early successes, the team believes human trials for gene repair are less than a decade away.

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A Guiding HandPatient navigators help families with limited English overcome language and cultural barriers by making sure they ask questions and truly understand what is being said.

Isai Larios was born with hydrocephalus. Cerebrospinal fluid, which normally drains through the circulatory system, was building up and putting dangerous pressure on his brain.

Isai’s parents, Anabel Cisneros and Ignacio Larios, brought their infant son to Seattle Children’s after being referred by a doctor in their hometown of Yakima. Because they speak limited English, a Spanish interpreter assisted them, but Isai’s parents still did not fully understand their baby’s diagnosis.

When they returned to Children’s for a second appoint-ment, doctors wanted to place a shunt to drain the cerebro-spinal fluid, and Isai was admitted right away. Isai’s parents didn’t understand that the pressure from the fluid had already caused some permanent injury to Isai’s brain. They thought their 4-month-old son was improving and would develop normally.

Confused but reluctant to ask questions, Isai’s parents felt all alone. Then Blanca Fields stepped in. Fields is one of three patient navigators at Children’s — a role that goes beyond what the hospital’s regular interpreters provide.

Specially trained in medical interpretation, patient navigators don’t just interpret conversations. They encourage questions and make sure families truly understand what is being said. They also make referrals, schedule appointments, and arrange child care, transportation and financial assistance. Over time, they prepare families to make their own way through the healthcare system, both inside and outside the hospital.

“Communication issues should not prevent families who speak limited English from receiving the highest quality of care,” says Sarah Rafton, director of the hospital’s Center for Diversity and Health Equity. “We want to make sure all families are able to participate as full partners in their child’s care.”

The three patient navigators aren’t just bilingual — they are members of the ethnic communities they serve. Latino navigators Fields and Martha Pinto and Somali navigator Ali Adem are familiar with the unique values that influence how immigrant families interact with the healthcare system.

(Top) “Having Blanca there was a real blessing,” says Anabel Cisneros (top right) of the meeting that Fields (top left) arranged with her son Isai’s care team.

(Bottom, from left) Anabel Cisneros and Ignacio Larios come to Seattle Children’s from Yakima to have their son Isai treated for hydrocephalus.

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“I wasn’t surprised that Isai’s parents were reluctant to ask questions of their doctors,” Fields explains. “In Latino culture, there is tremendous respect for doctors. We will never question the doctor because the doctor knows everything. We will just say ‘yes.’”

Fields arranged a meeting between the family and Isai’s entire medical team, where she made sure his parents received — and understood — answers to every question.

“Before that meeting, we were very confused, but it was awkward for us to tell the doctor,” says Isai’s mom. “Having Blanca there was a real blessing.”

Providers value navigators as much as families do. “Even

Patient navigators, like Ali Adem (above left), help establish rapport between families and clinicians, which helps ensure families understand complex medical information and how to care for their child at home, says Sarah Pulliam (above right), a social worker involved in diabetes care.

with an interpreter, it’s difficult to explain complex situations to families who speak little or no English,” says Sarah Pulliam, a Children’s social worker involved in diabetes care. “There’s a lot to learn before families can safely care for a diabetic child at home. Navigators establish a level of rapport that helps us ensure families understand the information we’re giving them without the family getting defensive.”

Building trust between families and providers is critical — especially when families come from countries where medical care is poor, such as Somalia. “Somalis want to avoid a child having a surgery or any kind of major procedure,” Adem says. “Everyone knows a story of someone who had a surgery and lost their life or lost a limb in a hospital back in Somalia.”

The navigator program began with a grant from the Washington State Department of Social and Health Services. It will be carefully evaluated to determine if it should be continued and perhaps expanded.

“We expect the evaluation to show that navigators give families the knowledge and confidence to take a more active role in decision-making involving their child,” says Dr. Doug Jackson, chief of the Center for Diversity and Health Equity. “It’s all about meeting our hospital goal of improving equity in healthcare.”

patient families who come to Seattle Children's speak limited English.

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What’s Happeningat Seattle Children’s

This spring brought the hard reality of our national economic crisis home to us at Seattle Children’s in a powerful way.

After deliberating on how to address a $9 billion shortfall, Washington state legislators approved a budget that includes substantial cuts in funding to Medicaid and other programs that support healthcare for our state’s most vulnerable children and families.

As a result, we expect to see about $22 million in cuts over the next two years.

As Connection magazine goes to print, we are still analyzing the details of the Washington state budget and its impact on Children’s — but we believe we can preserve our existing clinical programs.

To accomplish this we are stepping

Meeting the Challenges of the State Budget

Seattle Children’s neonatal outreach coordinator Jeanette Zaichkin, RN, is the first nurse in the nation to have a book published by the American Academy of Pediatrics (AAP). The third edition of Zaichkin’s book, Newborn Intensive Care: What Every Parent Needs to Know, will be published by the organization in fall 2009.

The book’s 17 chapters, written by clinicians from across the United States and Canada and edited by Zaichkin,

AAP Publishes Book by Seattle Children’s Nurse

Jeanette Zaichkin is the first nurse in the nation to have a book published by the American Academy of Pediatrics.

feature a comprehensive review of newborn medical conditions and the challenges facing parents of babies in intensive care. The easy-to-understand guide is used by parents, nursing and medical students, home-health nurses and social workers. Chapters range from “NICU Players: Working With the Team” to “Home at Last.”

In the upcoming edition, Zaichkin and five other clinicians from Seattle Children’s contribute chapters.

up our efforts to eliminate waste, reduce expenses and conserve resources through our Continuous Performance Improvement program. Ideas offered by our employees and physicians have already helped us save millions of dollars.

Our founding promise — to serve all children in our region regardless of a family’s ability to pay — remains as strong as ever. The events of this spring reminded us again that the support of our community is essential to achieving this audacious goal.

Thank you for all you do on our behalf. Now more than ever, we rely on your generosity to fulfill our promise to the children and families we serve.

Thomas N. Hansen, MD CEO, Seattle Children’s

Cilla Joondeph Chairman, Seattle Children’s Hospital Board of Trustees

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“ The 21st century digital divide separates too many clueless parents from their Internet-savvy children.”

— Dr. Dimitri Christakis Teens and tweens often don’t realize the consequences of sharing personal information online.

Two groundbreaking studies from Seattle Children’s validate parental concerns about teens’ online communication and suggest that e-mail interventions from a physician may decrease risky behavior.

The first study found that out of 500 teens, about half frequently discussed high-risk behaviors like alcohol or drug use, sex and violence on the social networking Web site MySpace.

Seattle Children’s researcher Dr. Dimitri Christakis, one of the lead authors of the studies, also found

that young people who said they were active in sports, religious groups or other interests were less likely to discuss risky behaviors on MySpace.

In the second study, the researchers read MySpace profiles of approximately 200 teens who discussed high-risk behaviors and then sent a physician e-mail to half of the group, which included a warning about the risks of sharing personal information online.

After the e-mail intervention, more than 40% of the teens either removed references to sex behaviors or

substance use or changed their profile from public to private. Among teens who did not receive an intervention message, only about 5% removed such information.

The studies were published in the January 2009 issue of the Archives of Pediatric and Adolescent Medicine.

You can hear Christakis discuss findings from both studies at www.seattlechildrens.org/home/assets/press_release/christakis_myspace.mp3.

Teens Display Risky Behavior on MySpace

Bringing Health and Safety Information Closer to Home

Seattle Children’s new health and safety van, supported by an $80,696 grant from Kohl’s Cares for Kids program, brings information to families in local communities about everything from home childproofing to healthy eating, and distributes low-cost safety gear, such as bike helmets and life jackets.

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Scientists, policy makers and newborn health experts from 35 countries gathered in Seattle May 7 to 10 to develop a global action plan to address prematurity and stillbirth. Worldwide, more than 3 million stillbirths occur each year, and premature birth is a leading cause of newborn death.

Seattle Children’s Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) hosted the invitation-only conference in cooperation with the Bill & Melinda Gates Foundation, March of Dimes, PATH, Save the Children, UNICEF and the World Health Organization.

At the conference, GAPPS’ team of international investigators presented their research findings. A dozen work groups then identified and prioritized recommendations for advancing research and improving pregnancy outcomes.

“These are truly global problems, affecting more than 16 million families in developed and developing countries. Goals created at this conference will foster long-term collaborations to improve maternal, newborn and child health globally,” said Dr. Craig Rubens, a physician-researcher who serves as GAPPS executive director.

For more information, including a webcast of the event, see www.gapps.org.

Creating a Road Map to Prevent Prematurity and Stillbirth

$26 billionis spent on healthcare costs related to prematurity in the United States each year.

Every year, 12.5 million babies are born preterm, and more than 4 million are stillborn or die because they were born too early.

Investing in the Future With an eye on current and future need, Seattle Children’s moves forward with growth plans to keep pace with increasing demand.

Seattle Children’s is moving forward with long-standing plans to expand the main hospital campus in Seattle and develop an outpatient clinic and surgery center in Bellevue.

“Our facilities are at capacity much of the time and the demand for our services continues to increase. We need to grow to keep our promise to the children of our region,” says Dr. Tom Hansen, Children’s CEO.

“We never want to reach a time when kids are being redirected to California or Denver to get the treatment they need because we don’t have room.”

Children’s is nearing the end of the Major Institution Master Plan (MIMP) process. The city of Seattle requires this process of every large institution that wants to grow to explain the need for its growth and assess its impact on the surrounding neighborhoods and the city.

Children’s formally began the process in 2007. We are hopeful that construction of the needed hospital beds will begin in 2010.

Bellevue outpatient facility

In July, we officially dedicate the site of the new Seattle Children’s Clinic and Surgery Center in Bellevue. The new center, expected to open in 2010, will provide access to our high-quality care closer to home for many families who live on the east side of Lake Washington.

Services planned for the 75,000-square-foot building include a day surgery center, urgent care, imaging, pharmacy, lab, sports therapy gym and more than 15 clinics from audiology to vascular anomalies to our Sleep Disorders Center.

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Philanthropists Gather in Seattle Seattle Children’s Hosts North American Leadership Conference

Hundreds of supporters from 24 pediatric hospitals attended the Children's Circle of Care North American Leadership Conference and Gala Dinner in Seattle in May.

Leading benefactors from 24 pediatric hospitals gathered in Seattle May 7 for the Children’s Circle of Care (CCC) North American Leadership Conference and Gala Dinner. More than 650 guests attended, including nearly 375 from Seattle Children’s.

CCC is an annual giving program for individuals, couples and family foundations who give $10,000 or more per year to a participating hospital. Collectively, members have donated more than $2.6 billion since CCC was founded in 1995.

“CCC members have become a major force in advancing pediatric healthcare,” says Dr. Tom Hansen, Children’s CEO.

The annual conference recognizes members for their generosity, highlights how philanthropy supports

research and patient care, and educates attendees about developments in pediatric medicine. This year’s featured speakers were Dr. Richard Hopper of Seattle Children’s, who is working to improve craniofacial surgery around the world; Dr. Robert Baldassano of The Children’s Hospital of Philadelphia, who has advanced treatments for inflammatory bowel disease; and Dr. Bruce Carleton of B.C. Children’s Hospital, who researches the impact drug therapy has on human health and quality of life.

“The advances taking place in pediatric medicine are amazing,” says Seattle CCC member Shalisan Foster. “It’s gratifying to support this work.”

Tom Brokaw, honorary chair, spoke about leadership and philanthropy at the luncheon, and Grammy

Award–winning singer-songwriter Natalie Cole performed at the gala, held at the WaMu Theater. The night before, Seattle CCC members gathered at Benaroya Hall for a wine reception, sponsored by Sellen Construction, Costco Wholesale and the Oki Foundation.

Local leadership was vital to conference success. A large group of volunteers worked with staff at Seattle Children’s Hospital Foundation to create a unique and inspiring conference experience. Jan and Jim Sinegal and Shalisan and Greg Foster led the host city committee. John Meisenbach directed efforts to acquire sponsorships, Scott Redman led a drive for new members and Michele Smith oversaw conference hospitality and served as emcee for all major events.

Honorary chair Tom Brokaw with Seattle Children’s Circle of Care founding co-sponsors (from left) Jim Sinegal, CEO, Costco; Jan Sinegal; and Scott Oki, the Oki Foundation, at the North American Leadership Conference last month in Seattle.

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On the Scene

The eighth annual One Big KISS for Seattle Children’s Hospital Radiothon raised more than $902,000 during its broadcast from the hospital on 106.1 KISS FM on Feb. 25 and 26. Proceeds benefited Children’s Greatest Needs Fund, the Jackie & Bender Endowment for Uncompensated Care and pediatric brain tumor research. The program

Bender (left) and Jackie welcomed Sara and James Hsu and twins Isaac and Toby to One Big KISS for Seattle Children’s Radiothon to talk about Toby’s successful treatment at Children’s for a heart condition.

Radiothon Raises $902,000

featured inspiring stories of patients, caregivers and volunteers, including that of 8-year-old Erik Johnson, who raised $21,119 for research in memory of his best friend who died of a brain tumor. Listeners responded by contributing nearly $29,000 more toward Erik’s efforts. “Even with a challenging economy, our listeners

really came through,” says Bender, KISS Morning Show co-host. The John L. Scott Foundation was the Radiothon presenting sponsor.

Community support helps Seattle Children’s provide sick or injured children in our region with an equal opportunity to receive world-class pediatric care.

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More than 500 supporters attended the annual meeting of Seattle Children’s Hospital Guild Association, emceed by John Curley at the Westin Seattle on April 30. Michele Smith, chair of the association’s board of trustees, highlighted recent guild accomplishments, including the $11.4 million raised through projects and membership in fiscal year 2008.

Dr. Tom Hansen, Children’s CEO, thanked attendees for supporting uncompensated care, highlighted achievements from the past year and discussed the financial challenges facing the hospital. He explained why, despite the recession, Children’s must expand to meet the region’s growing need.

Dr. Doug Hawkins, associate division chief of the hospital’s Hematology/Oncology Department, spoke about Children’s nationally recognized cancer care. At the luncheon’s conclusion, attendees donated $20,500 to support uncompensated care.

Annual Meeting Highlights Guild Contributions

(Above) Hundreds of Seattle Children’s guild members attended their annual meeting at the Westin Seattle in April. (right top) Michele Smith, chair of Seattle Children’s Hospital Guild Association Board of Trustees, thanked annual meeting attendees for supporting the hospital. (right bottom, from left) Pam Baughn, Cary Young and Sharon McCagg were honored as emeritus trustees for serving at least nine years each on the Guild Association board.

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The Star Guild presented five American Girl Fashion Shows, which raised $90,000 for uncompensated care at Meydenbauer Center in Bellevue March 13 to 15. More than 2,000 guests watched approximately 100 girls and their dolls model historical and contemporary fashions. Leading up to the shows, the models collectively raised more than $12,000 for Seattle Children’s through activities such as

Loggers Benefit Kids

The Washington State Contract Loggers Association raised nearly $27,000 at the 12th Annual Log A Load for Kids dinner, held at the Marcus Whitman Hotel in Walla Walla on March 13. Proceeds benefited Seattle Children’s and Children’s Miracle Network in Spokane. The Western-themed event included a dessert auction, raffles, and live and silent auctions. Children’s thanks the Washington logging industry for its generous support.

Garden Sale Turns 85

The 85th annual Garden Sale raised nearly $24,000 outside Seattle Children’s administrative offices April 18 and 19. The Laura Brigman Guild presented the event, which is the hospital’s longest-running fundraiser. The sale featured many varieties of perennials, annuals, shrubs, trees, ornamental grasses and ground covers. Children’s gardeners advised shoppers on plant selection and care. Raffle prizes included a private two-hour consultation with Jeff Hughes, a horticulturist and manager with Children’s Grounds Maintenance Department.

Emcee John Curley joined Preston Kuppe Guild members Lisa Weller (left) and Jolene Logue at the Art à la Carte luncheon in May.

Guild Artfully Raises $77,000

The third annual Art à la Carte luncheon raised $77,000 at The Golf Club at Newcastle May 1. Attended by 200 guests and presented by the Preston Kuppe Guild, the event featured silent and live auctions of work donated by Northwest artists, including paintings, jewelry, textiles, glass and photography. The live auction, conducted by John Curley, included travel packages, dinner outings and a Raise the Paddle to benefit uncompensated care. Marji Mar and her 9-year-old son Marques spoke about the cardiac care Marques received at Seattle Children’s.

Philanthropy in Style at Fashion Shows

bake sales, babysitting and coin drives. During each show’s intermission, Star Guild President Dana Lofton welcomed the Walters family, who shared a video about how uncompensated care helped them. “We thank our generous donors for supporting uncompensated care during a time of rapidly rising need,” says event chair Kristen DeFranco.

Kylee Smith, 3, chats with S'mores the Pony, a live-auction item at the Log A Load for Kids dinner in March.

Laura Brigman Guild members (from left) Meghan Long, Deb Long, Inger Hamburg, Diana Clements and Kristine Houde enjoyed the gorgeous weather and brisk sales at Seattle Children’s 85th annual Garden Sale.

American Girl Fashion Shows have helped the Star Guild raise $268,000 for uncompensated care since the guild formed in 2006.

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Healthy Support from PCC

PCC Natural Markets is donating 5% of Kid Picks product sales, up to $10,000, to Seattle Children’s through June 15. The Kid Picks product line highlights healthy foods that children enjoy. To be included, items must be approved by two-thirds of the youngsters who judge them in area taste tests.

The Edmonds, Redmond and Issaquah PCC stores kicked off the promotion with pancake breakfasts, scavenger hunts and product giveaways on May 2. Amanda Jones, PhD, and Mark Ruffo, PhD, from Children’s Science Education Outreach Program visited the Edmonds store and involved kids in hands-on science experiments.

RE/MAX Raises $52,000

RE/MAX Select Real Estate in Maple Valley raised more than $52,000 through the third annual “Little Miracles” dinner and auction April 24 at the Olson Mansion. Held to benefit uncompensated care and pediatric brain tumor research, the event included a live auction conducted by John Curley and a silent auction. Brad Hawkinson spoke about his children, Jennifer and Charlie, who were treated for cancer at Seattle Children’s. The hospital thanks participating RE/MAX agents, vendors and clients for their ongoing support.

The late Helen Clark left Seattle Children’s more than $117,000 in savings bonds to support uncompensated care.

Seattle Children’s patient Charlie Hawkinson and his parents Brad and Kris attended the RE/MAX Select dinner and auction in April.

Amanda Jones, PhD, of Seattle Children’s Science Education Outreach Program, helped youngsters conduct experiments on strawberry DNA at the Edmonds PCC in May.

A Legacy of Healing

Seattle Children’s received a gift of more than $117,000 in United States Savings Bonds from the estate of Helen Clark, who passed away in 2008. A longtime Poulsbo resident and former member of the Ingeborg Nevill Guild, Clark believed passionately in Children’s commitment to providing the best possible care, regardless of a family’s financial circumstances.

In fiscal year 2008, estate gifts like Clark’s provided $16.9 million for uncompensated care, pediatric research and patient care programs, among other important initiatives. To learn how to include Children’s in your estate plan, call 206-987-4977.

As Kelsey Abrejera approached her 12th birthday, she asked family and friends to donate to Seattle Children’s in lieu of buying her gifts. “I realized I didn’t need anything, and I wanted to honor my friend who was a patient there,” says Kelsey.

“I am extremely proud of Kelsey,” says Michael Abrejera, her father. “She came up with the idea all on her own.”

Kelsey Abrejera (right), a sixth grader at St. Philomena Catholic School in Des Moines, presents Seattle Children’s representative Kristin Johnson with gifts for patients and more than $600 in donations, which Kelsey collected at her birthday party.

Kelsey’s generosity is inspiring others. “Now my friends are getting ideas for how to do something like this,” she says. If you would like to celebrate a special occasion and help patients receive world-class pediatric care at the same time, contact Commemorative Giving at 206-987-4844.

Birthday Party Benefits Seattle Children’s

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Miracle Balloon Sales June 3 to 16; participating Haggen Food & Pharmacy and TOP Food & Drug locations

Your purchase of a Miracle Balloon supports Seattle Children’s.

Call 206-987-4903.

Children’s Ride Weekend Gala and Auction Friday, June 26, 6 p.m.; Fremont Studios, Seattle

Enjoy dinner, entertainment and live and silent auctions. Bid on two

customized Harley-Davidson motorcycles. $150 per person. Visit

www.childrens-ride.com or call 206-987-4876. Presented by the

Imagine Guild.

Children’s Ride 14 Sunday, June 28, 7 a.m.; registration at Safeco Field parking garage, Seattle

Join a Washington State Patrol–escorted ride from Safeco Field to

Emerald Downs in Auburn. $60 per person includes ride, racetrack

admission and barbecue. Visit www.childrens-ride.com or call

206-987-4876. Presented by the Imagine Guild.

21st Annual Pacific Northwest Historics Vintage Auto Races

Friday, July 3, to Sunday, July 5, gates open at 8:30 a.m.; Pacific Raceways, Kent

Enjoy races featuring rare pre-1970 automobiles. Adults: $25 per day or

$40 for three days. Children: $5 per day. Visit www.northwesthistorics.com

or call 206-987-2777. Presented by the SOVREN Guild.

Miracle Treat Day Thursday, Aug. 13; participating Dairy Queen locations

Proceeds from the sale of Blizzards will benefit Seattle Children’s.

Visit www.miracletreatday.com.

Auction of Washington Wines Weekend

Barrel Auction & Picnic with the Winemakers Thursday, Aug. 13, 4:30 p.m.; Chateau Ste. Michelle, Woodinville

Enjoy wine tasting, a gourmet picnic, games, barrel and

silent auctions, and entertainment for $125 per person.

Visit www.auctionofwashingtonwines.org or call 206-326-5747.

Winemaker Dinners Friday, Aug. 14; selected wineries and private residences in Greater Seattle

Attend dinner with renowned Washington winemakers and chefs for

$250 per person. Visit www.auctionofwashingtonwines.org or call

206-326-5747.

Covey Run 10K and 5K Run/Walk & Kids Dash Saturday, Aug. 15, 8 a.m.; start and finish at Redhook Ale Brewery, Woodinville

Pre-register for $30; $35 on race day. Children under 10 participate

in Kids Dash for free. Bring pledges and donations. Register at

www.runforchildrens.org or call 206-987-4816. Presented by the

Run for Children’s Guild.

22nd Annual Gala Auction Saturday, Aug. 15, 4:30 p.m.; Chateau Ste. Michelle, Woodinville

Black-tie gala will feature live and silent auctions with collectible

Washington wines, wine vacations and a multicourse dinner created

by prominent Northwest chefs, served with Washington wine. $500

per person. Weekend and corporate packages available. Visit

www.auctionofwashingtonwines.org or call 206-326-5747.

Lenny Wilkens Celebrity Golf Classic Weekend

Dinner and Auction Friday, Aug. 14, 5 p.m.; Bellevue Hyatt Regency

$175 per person or $1,600 for a table of 10.

Visit www.lennywilkensfoundation.org or call 425-898-4592.

Golf Tournament Saturday, Aug. 15, 10 a.m.; Echo Falls Country Club, Snohomish

Golf packages start at $275 per person.

Visit www.lennywilkensfoundation.org or call 425-898-4592.

10th Annual Children’s Golf Classic Dinner Party

Sunday, Aug. 23, 4 p.m.; Safeco Field, Seattle

Join the Friends of Costco Guild for one of Seattle Children’s

premier fundraising events. Seating is limited. $250 per person.

Call 206-281-7130.

Seventh Annual Kirkland Concours d’Elegance

Sunday, Sept. 13, 9 a.m. to 4 p.m.; Carillon Point, Kirkland

Enjoy an impressive display of classic automobiles, motorcycles and

vintage wooden boats. Adults, $25; children 7-17, $10; kids under 7, free.

Visit www.kirklandconcours.com or call 425-822-7066. Supported by

the SOVREN Guild.

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Boards of Trustees 2008–2009

Hospital

Cilla Joondeph

Chairman

Sue Albrecht

Dean Allen

Rhoda Altom

Libby Armintrout

Robb Bakemeier

Joel Benoliel

Jane Blair

Julia Calhoun

Pat Char

Nancy Daly

Michael Delman

David Fisher, MD

Bob Flowers

Mary Ann Flynn

Thomas Hansen, MD

Kay Heron

Genie Higgins

Jim Ladd

Mona Locke

Cindy Masin

Linda Mattox

Resa Moore

Gloria Northcroft

Laurie Oki

Kathy Randall

Rob Roskin, MD

Jan Sinegal

Peggy Walton

Foundation

Laurie Oki

Chairman

Sherry Benaroya

Robert Cline

A.M. Clise

Ronald Crockett

Richard DiCerchio

David Fisher, MD

Shalisan Foster

Thomas Hansen, MD

Ray Heacox

Kandace Holley

Ted Johnson

Cilla Joondeph

Craig Kinzer

Howard Lincoln

Candy Marshall

John Meisenbach

Cameron Myhrvold

Gordon Perkin, MD

Douglas Picha

Scott Redman

Tami Reller

Fariba Ronnasi

Robert Sawin, MD

Kenneth Schubert Jr.

J. Lennox Scott

Peter Shimer

Michele Smith

Dale Sperling

F. Bruder Stapleton, MD

Kelly Wallace

Robert Watt

Dina Wells

Lenny Wilkens

Guild Association

Michele Smith

Chairman

Pamela Baughn

Laurie Boehme

Sue Byers

Kerri Coyle

Jana Dukelow

Krista Fay

Mary Jo Foseid

Shalisan Foster

Jennifer Goldberg

Dorothy Greenwood

Mary Lynn Holman

Jane Humphries

Mari Juntunen

Linda Maki

Louisa Malatos

Barbara Mann

Lorene Martin

Lisa Mawer

Sharon McCagg

Suzanne Sinegal McGill

Trish Oury

Nancy Schenck

Laurie Taylor

Dixie Wilson

Cary Young

Jennifer Zinda

Executive Staff

Thomas Hansen, MD

CEO

Patrick HaganPresident and Chief Operating Officer, Seattle Children’s Hospital

James Hendricks, PhDPresident, Seattle Children’s Research Institute

Douglas PichaPresident, Seattle Children’s Hospital Foundation

Lisa BrandenburgSenior Vice PresidentChief Administrative Officer

Drexel DeFordSenior Vice President Chief Information Officer

Mark Del Beccaro, MDPediatrician-in-Chief Chief Medical Information Officer

David Fisher, MDSenior Vice President Medical Director

Susan Heath, RN, MNSenior Vice President Chief Nursing Officer

Sanford Melzer, MDSenior Vice President Strategic Planning

Robert Sawin, MDSurgeon-in-Chief President, CUMG

Jeffrey SconyersSenior Vice President General Counsel

F. Bruder Stapleton, MDSenior Vice President Chief Academic Officer

Kelly WallaceSenior Vice President Chief Financial Officer

At a Glance

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Seattle, WA 98145-5020

www.seattlechildrens.org

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Job#: CHILD 5073 Job Title: Research Nino Ad Pub/s: Connections Date: 3/23/09 Proof: 2Trim: 8.5"w x 8"h Live: n/a Bleed: 8.75"w x 8.125"h (top only) Color: CMYK Laser%: 100% Images: HighRes File Author: TH

No doctor alone can stop SIDS, childhood epilepsy or brain tumors. That’s why we brought his team to Seattle.

Dr. Nino Ramirez, Director of the Center for Integrative Brain

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Dr. Ramirez leads a team of top brain researchers

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At Seattle Children’s, fi nding cures for tomorrow

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CHILD 5073 Research Nino_C.indd 1 4/7/09 9:48:57 AM