NEW BED TOWER TO HELP CHILDREN // 2
STORIES For friends of Duke Children’s // Fall 2018
A TRUE ALL-STAR FOR DUKE CHILDREN’S // 10
Finding Faith
BOUNCING ALONG // 18
Life-changing surgery gives teen new outlook on life
Coming into His Own Down syndrome program helps put patient on the path to independence
24 students from Durham 202 students from other
counties in North Carolina
116 students from 20 other states 2 students from 2 other countries 131 students served
Four years ago, Faith Newsome underwent weight-loss surgery, becoming the youngest patient and only the second teen to do so at Duke. It wasn’t a decision that Faith, her parents, and her doctors made lightly. Together, they took into consideration the health problems obesity was causing the teen and made sure she was physically and emotionally ready for the life-changing surgery. Today, Faith is doing well, balancing her life as a busy college student while managing a healthy lifestyle. Read more about Faith on page 12. Frankie Antonelli overcame many challenges to become a college student. A young man with Down syndrome, Frankie had the backing of two determined parents and a multidisciplinary team of providers at Duke’s Comprehensive Down Syndrome Program. Thanks to their help over the years, Frankie is now a sophomore who is making strides toward living a fulfilling, independent life. Frankie’s inspiring story starts on page 6. You may have noticed this issue of Stories looks a little different than the previous ones. I hope you enjoy the magazine’s new, refreshed look, along with the stories of courage and hope.
Because nothing matters more,
The program was started in 1959. In 1990, the hospital school was established by Durham Public Schools to provide relief and support for sick students being cared for at Duke Children’s.
ANN M. REED, MD Chair, Department of Pediatrics Physician-in-chief, Duke Children’s
CHRIS HILDRETH
Duke Children’s STORIES
by homebound teachers
2
FALL 2018
Duke Children’s Stories is published by: Duke Children’s Development Office 710 W. Main Street, Suite 200 Durham, NC 27701
A newsletter for friends of Duke Children’s
4 6
COMING INTO HIS OWN Down Syndrome Program Helps Put Patient on the Path to Independence
10 12
STANTON SIMMERSON A True All-Star for Duke Children’s FINDING FAITH Life-changing Surgery Gives Teen New Outlook on Life
17 18
NEW CENTER Duke Launches Pediatric Thyroid Center BOUNCING ALONG Fundraising News
Publisher Amy Deshler
Writers Rebecca Casey, Lindsay Gordon-Faranda, Whitney J. Palmer, Miriam Sauls
Editor Bernadette Gillis, bernadette.gillis@duke.edu
Designer/Art Director David Pickel Photographers Alex Boerner, Chris Hildreth, Ken Huth, Kent Smith
Produced by Duke Health Development and Alumni Affairs ©2018 Duke University Health System. 8543
NEWS Recent headlines and announcements
CONTENTS
letter from the chair
475
number of patients who attended the Durham Public Schools’ Hospital School during the 2017-2018 academic year.
Dear Friend of Duke Children’s,
New bed tower addition, page 2
KEN HUTH
D
August 2018
Trent Semans Center for Education
Duke Cancer Center
rive
e
riv al
ve
Dri
Pil
eD
ch
ear
Bryan Research Building
rs D
Nanaline H. Duke Research Building
Res
ine Science earch Center
Duke Medicine Pavilion
Co
ive
Dr
North uilding
Sands Research sear arch ch h i ing Building
we
Duke Hospital
rch
sea
2 Duke Children’s STORIES
Duke Children’s Hospital
Most of the Children’s inpatient units will relocate to the first four floors of the new bed tower, which will house the very latest in medical technology; new surgical, diagnostic, and treatment rooms; and a host of family-friendly amenities. Perkins + Will Architects, Inc., designed the hospital addition to provide the flexibility to adapt as technology evolves while offering more privacy and space for families. Flo
Erwin Road
ANN M. REED, MD Elba Road Chair of the Department of Pediatrics and Physician-in-chief ErDuke win RoChildren’s of ad rive
Duke Eye Center
“Our new facility will not only be state of the art, it will create a truly caring environment that will support our patients, their families, “Our new hospital and our team,” says Ira will capture the Cheifetz, MD, FCCM, imagination of FAARC, executive children of all director and CMO ages and focus on for Duke Children’s their personal as and associate chief well as medical medical officer at Duke needs.” University Hospital. 147
Trent D
Fulton Street
Take a virtual tour of the bed tower addition: roundme.com/tour/271699/ view/856147/
uke University Hospital is currently constructing a new bed tower, which will provide a contemporary and innovative inpatient facility for Duke Children’s patients. The new space will combine cutting-edge medical technology, a family-friendly layout, and youth-appropriate decor to help Duke’s youngest patients heal. The expansion, covering 480,000 square feet of space, is expected to open in October 2021.
Trent Semans Center for Health Education
FEATURES
350 480,000 4 floors 6 floors
patient rooms square feet
for Children’s Hospital for adult patients
> New patient rooms that provide
ample privacy and space for patients and their families, including sleeping accommodations for family members.
> Dedicated patient-family lounges and
playrooms, including a teen zone, to create a supportive environment where patients and their families can interact in an environment safe from medical procedures.
> Flexible bed space allowing providers the
ability to adapt to new technologies and provide more efficient services as patients’ needs evolve.
> Child-friendly environment featuring
nature imagery and large windows for natural light to help patients and families feel more comfortable during their stay.
> State-of-the-art cardiac catheterization
labs with advanced imaging technology to help achieve minimally invasive procedures with better precision, quicker procedures, and less time under anesthesia.
OPPORTUNITIES For information about naming opportunities please contact Amy Deshler, senior executive director, Duke Children’s Development, at 919-385-3132 or amy.deshler@duke.edu.
New Bed Tower to Help Duke Children’s Build a Healthier Future
uke Children’s has once again ranked among the nation’s finest in the 2018-19 U.S. News & World Report’s Best Children’s Hospitals rankings. Duke Children’s ranked among the top 50 nationally in 9 areas of specialty—cancer, cardiology and heart surgery, diabetes and endocrinology, gastroenterology and GI surgery, neonatology, nephrology, neurology and neurosurgery, orthopedics, and pulmonology. The Best Children’s Hospitals rankings highlight U.S. News’s top 50 U.S. pediatric facilities in 10 specialties. The 2018-19 rankings were created from clinical data collected through a detailed survey sent to nearly 200 facilities across the country.
M
other-to-child transmission of HIV has been reduced dramatically worldwide with the use of anti-retroviral therapies (ART), but even with these effective drugs, approximately 400 babies a day become infected before, during, and after birth. How this happens has been a question that complicates treatment and vaccine development strategies. Now researchers led by the Duke Human Vaccine Institute have provided some answers that could prove helpful as potential vaccines inch closer to testing. The key to a specific maternal virus infecting the infant appears to be the virus’s ability to escape attack by antibodies in the mother’s blood, enabling transmission during pregnancy, delivery, or breastfeeding. The findings were published March 29 in the journal PLOS Pathogens. “This finding is important for vaccine development,” says senior author Sallie Permar, MD, PhD, director of the Laboratory of Neonatal Viral Pathogen Immunity at the Duke Human Vaccine Institute. “We have shown that the ability of the mom’s antibodies to attack her own virus is an important contributor to the risk of mother-to-infant transmission, so we can now focus on using immune strategies to boost the responses against the mother’s virus.” The study’s findings suggest that there are alternative immune strategies that researchers could pursue in addition to ART.
L After High School, Young Women’s Exercise Rates Plunge
A
recent Duke study found that exercise rates among young women, especially young women of color, are significantly lower than exercise rates among young men. The disparities are worse after high school. In the study, which was published in the journal JAMA Pediatrics in June, 88 percent of teenage boys reported being physically active, compared to 78 percent of girls. The study also showed that after high school, about 73 percent of young men remain active, while only 62 percent of young women do. The drop in exercise is even
Percentage of Young Women Reporting Physical EXERCISE RATES Activity AMONG YOUNG WOMEN
White Black Hispanic Other 12-17 years old
82.4% 69% 70% 82.2%
18-25 years old
70.8% 45% 51.7% 53.7%
25-29 years old
66.6% 45.3% 55.1% 58.5% 0
50%
100%
SOURCE: National Health and Nutrition Examination Survey, 2007-2016
more significant among women of color. Nearly 70 percent of black women report being physically active as teenagers, but only about 45 percent are active when they reach their twenties. “The bottom line for this study is that there is a lot of room for improving how physically active teens and young adults in our country are,” Charlene Wong, MD, a coauthor of the study and an assistant professor of pediatrics at Duke, said in an article published by the NPR Science Desk. According to the study, most young men are meeting the recommended guidelines for exercise, however, young women are not. Researchers say social barriers and income could be among the reasons why young women are less active than men.
ars M. Wagner, MD, has been named the new chief of the Division of Hematology-Oncology in the Department of Pediatrics. Wagner spent the last five years serving as professor of pediatrics and chief of the Division of Pediatric Hematology/ Oncology and Children’s Miracle Network research chair in pediatrics at the University of Kentucky. His clinical and translational research is primarily focused on solid tumors. He has led national phase I and II trials through the Children’s Oncology Group as well as the New Approaches to Neuroblastoma Therapy Consortium and the National Pediatric Cancer Foundation. Specifically, he is interested in the development of combination therapies for sarcoma, which couples well with his clinical interests, including sarcoma and pediatric brain tumors. “Dr. Wagner’s impressive strengths as a researcher, clinician, educator, and mentor make him the ideal leader for our pediatric hematology/oncology efforts, and we are fortunate that he will be serving in this new role in the department,” says Ann M. Reed, MD, Samuel L. Katz Professor of Pediatrics, chair of the Department of Pediatrics, and physician-in-chief of Duke Children’s.
New Children’s Giving Website
D
uke Children’s Office of Development is excited to announce its new giving website: giving.dukechildrens. org. The new site will host Duke Children’s fundraising content, including ways to give; information on how to host a third-party event; the impact your gift has for Duke Children’s; patient, physician, and donor stories; how to get involved as a development volunteer or patient ambassador; and much more. “We are thrilled with our new digital home,” says Senior Executive Director of Development Amy Deshler. “Our new website outlines the many ways individuals can support Duke Children’s, from organizing a third-party event to leaving a legacy for Duke Children’s via a planned gift. We hope our friends and donors enjoy the inspirational stories shared on this website.” To see the new Duke Children’s giving website, visit giving.dukechildrens.org.
NEWS
D
Wagner Named Chief of Hematology-Oncology
Researchers Map How HIV Escapes Mother’s Immune Attack to Infect Infants
giving.dukechildrens.org
NEWS Duke Children’s STORIES
4
Duke Children’s Ranked Among the Nation’s Best
W
FEATURE
hen ESPN reporter Debbie Antonelli’s son Frankie started seventh grade, she knew she needed to consider his college education. But, as a young man with Down syndrome, his university search would be challenging, as would his preparation. “When he began seventh grade, I realized postsecondary education options existed for students with intellectual disabilities,” says the South Carolina resident. “So, we made academic adjustments to his individualized education program. We took charge of his education because a cookiecutter approach wouldn’t give him the option of going to college.” To reach this goal, she enlisted the help of Frankie’s doctor, Priya Kishnani, MD, chief of the Division of Medical Genetics in Duke’s pediatrics department. Kishnani also leads Duke’s Comprehensive Down
Duke Children’s STORIES
Frankie Antonelli is a second-year student in the Clemson Life Program at Clemson University.
Clemson University President James P. Clements poses with Debbie and Frankie Antonelli while Frankie moves into campus housing
_Down syndrome__ _program helps__ _put patient on__ _the path to__ _--independence__ Syndrome Program at Lenox Baker Hospital, a multidisciplinary clinic that offers patient care and resources to approximately 1,500 children and young adults with Down syndrome and their families. The program coordinates with a patient’s primary physician. With Kishnani’s help, Debbie and her husband created a plan that culminated in Frankie, now 21 and a college sophomore, being accepted into the Clemson Life Program. This Clemson University initiative gives individuals with intellectual disabilities the opportunity to experience college and earn a postsecondary education certificate. “I think everything we discussed with Dr. Kishnani had an impact on getting Frankie prepared for an
6
BY WHITNEY J. PALMER PHOTOGRAPHS BY KENT SMITH
FEATURE Duke Children’s STORIES
8
opportunity to be accepted into Clemson Life,” Debbie says. “She was the Down syndrome expert who could tell me I was on the right path. She made suggestions, and she knew where I was as a parent and what stage Frankie was at every milestone.”
NOT MISSING A THING However, before Frankie enrolled at Clemson, he had medical, social, and educational needs to address. Living in Mt. Pleasant, close to the Medical University of South Carolina (MUSC), he had an excellent pediatrician, Debbie says. But, she knew only someone with Down syndrome expertise could help her son avoid health pitfalls. Consequently, when she learned of the Down Syndrome Program, she made an appointment for then-six-year-old Frankie. “I wanted to ensure I didn’t miss a thing in Frankie’s health care,” she says. “His pediatrician is terrific, but I felt I needed another layer. I didn’t want to make a mistake.” After the first appointment at Duke, she knew she’d made the right decision. Kishnani was not only interested in Frankie’s health but also in his social development and the educational resources available to him. It was total, well-rounded health care, Debbie says, and she’s returned annually ever since.
MEETING FRANKIE’S NEEDS Kishnani says she knew immediately Frankie’s family was dedicated to being active partners in maximizing his health and his abilities, setting him on the path for success. The program’s intent, Kishnani says, is digging deeper, going beyond what general pediatricians’ offices can provide someone
“[Frankie] cheers people on. He’s inspirational and is a contributing member of society who brings a lot to the table.” PRIYA KISHNANI Leads Duke’s Comprehensive Down Syndrome Program
YOU CAN SUPPORT more families like Frankie’s. Go to gifts.duke.edu/dch or use the enclosed envelope.
with Down syndrome. “We monitored Frankie’s ancillary care issues that could be overlooked even though most doctors are fabulous,” she says. “We examined every aspect of Frankie’s care plan to ensure there was nothing needing medical attention that would hinder his progress.” Frankie doesn’t have many of the physical conditions present in most individuals with Down syndrome, but he received treatment at Duke to improve his overall well-being, Kishnani says. For example, because his family values athletic activity, a clinic-associated orthopaedist fitted Frankie with orthotics to support his ankles and improve his gait and balance for sports. Today, he swims, plays basketball and golf, and lifts weights. Additionally, a speech therapist created a protocol to augment Frankie’s enunciation and communication abilities, and he was treated for sleep apnea to reduce his pulmonary hypertension risk. MUSC doctors, in consultation with Kishnani, also put tubes in his ears to prevent recurrent ear infections and augment his hearing. Recently, he underwent eye surgery to correct a weak muscle and sharpen his vision.
WHAT THE PROGRAM PROVIDES But, the program offers more than coordinated multidisciplinary care for patients, Kishnani says. It addresses
the whole family’s emotional and educational needs. A parents’ advocate discusses a family’s experiences and offers guidance on navigating medical and social situations, and a designated self-advocate is also available to provide insight about opportunities in the community for individuals with Down syndrome. Additionally, a social worker collaborates with the families’ school systems to design educational plans to best meet patients’ needs. “The social worker gets families plugged into the system correctly and gets them the right services,” Kishnani says. “Whether it’s behavioral services, family counseling, or getting a child established with extra school resources, the social worker’s impact is phenomenal.” The program also offers a clinic coordinator, genetic counseling support, physical and speech therapy, developmental pediatrics, and several subspecialty referrals, including ophthalmology; audiology; ear, nose, and throat; endocrinology; and cardiology. And, with financial support from Anna’s Angels, an organization funding Down syndrome research efforts, the program is investigating best practices for treating conditions common in this patient group, including celiac disease, thyroid dysfunction, and iron-deficiency anemia, as well as Down syndrome disintegrative disorder, a condition
Top left, Debbie helps Frankie put away clothes in the dorm. Above, Frankie and roommate Noah Wynne check out their kitchen. Left, Frankie and Noah Wynne show their Tiger pride. Debbie gives Frankie a hug before leaving.
10
Duke Children’s STORIES
ENJOYING COLLEGE LIFE Today, Frankie lives on campus with two other Clemson Life students and another student who works as an independent living assistant. He attends classes daily—his favorite is budgeting—and manages the apartment with his roommates. Through Clemson Life, he’s learning to live independently. “I love hanging out with my friends. I love watching TV, and I like getting to class on time,” Frankie says. “The BGR burger place downtown is my favorite place to hang out, and I love to go to the basketball games.” Frankie is also on a first-name basis with Clemson’s head football coach “Dabo” Swinney, and they talk about game plans. Most importantly, though, thanks to his medical care and his family’s health focus, Frankie is physically fit. Individuals with Down syndrome struggle with low muscle tone, but Frankie, 5’6” and 150 pounds, exercises with a personal trainer. In fact, he’s learning to become a trainer himself and helps his younger brother work out. Debbie credits Duke and Kishnani with giving Frankie many of the resources he needed to succeed. “Kishnani looks at the whole picture,” she says. “The program isn’t a stiff, corporate setting. It’s very nurturing. The doctors offer tips and help you.” Kishnani says she’s extremely proud of Frankie. He’s an example of what many individuals with Down syndrome can accomplish with the right care and guidance. “Frankie is an amazing young man. I’ve seen his perseverance and his family’s commitment, and I believe we, at the clinic, have been part of that story,” she says. “Frankie is an advocate for individuals with Down syndrome. He cheers people on. He’s inspirational and is a contributing member of society who brings a lot to the table. It has been our team’s privilege to be a part of Frankie’s care team and watch him come into his own.”
Stanton Simmerson:
A True All-Star for Duke Children’s
O
n August 25, 2018, a parade of motorcycles roared their way from Raleigh to Duke Children’s for the 19th Annual All-Star Ride for Life, a fundraiser for the patients and caregivers at the hospital. Event organizer Stanton Simmerson, a nurse and lifelong motorcycle enthusiast, started the ride 20 years ago after a life-changing encounter with a family in need inspired him to combine his love of motorcycles with a newfound passion to make a difference.
A LESSON ON CHARITY Simmerson began working as a nurse at Duke University Hospital in 1997. While on a lunch break in 2000, he
went to the Hardee’s in the hospital food court to grab a bite to eat. He noticed the line wasn’t moving. After about ten minutes of waiting, Simmerson went to the front of the line to investigate the issue. There, he found a sobering scene: the cashier was paralyzed as she watched a customer, a young man in his mid-twenties, count change on the counter over and over, struggling to see if he had 49 cents to buy a plain hamburger. But he kept coming up short, causing the delay in the line. “I felt as low as a human being could possibly feel,” says Simmerson, who is now a clinical III nurse in the adult pre-anesthesia testing ward at Duke University Hospital. He quickly offered to pay for the Simmerson young man’s (center) with Allan Kirk, MD, meal, but the PhD, and Ann man replied that M. Reed, MD, he did not want during the anyone’s charity. Duke Children’s Gala “I asked him, ‘Well, if I was standing here
BY LINDSAY GORDON-FARANDA
“Here I was thinking I was some big-shot nurse with so many problems, and then I came face to face with what real problems look like.” STANTON SIMMERSON
CHRIS HILDRETH
FEATURE
that impedes an individual’s communication abilities. The organization has provided seed money to advance research dedicated to developing new ways to enhance cognition and adaptive behavior in this patient group.
and was hungry, and you worked here, would you buy me lunch?’” Simmerson recalls. “He sheepishly admitted that yes, he would. So I told him, ‘Then it’s not charity, it’s just being a good person.’” Simmerson and the young man ordered their lunches and sat down together to eat.
A FATHER’S STRUGGLE Simmerson learned that the young man was in Durham to care for his four-year-old son, who was undergoing treatment at Duke’s Pediatric Bone Marrow Transplant clinic. His wife was at home in Kentucky with their two-year-old child. The young father’s situation was desperate: he had lost his job because of all the time he’d missed from work to take care of his son. He was sleeping in his car in the Duke University Hospital parking deck. “Here I was
thinking I was some big-shot nurse with so many problems,” Simmerson says, “and then I came face to face with what real problems look like.” Simmerson immediately called a social worker, who gave the young father vouchers for a hotel room and for meals. Simmerson also ensured that the social worker would keep tabs on the man and give him help and support during his TO LEARN son’s treatment. “As I MORE walked away from that experience, I realabout the All-Star Ride ized that I had to do for Life, contact Stan something more than Simmerson at just come to work and stanton.simmerson@ do my job. There had duke.edu. to be something that
I could do to make things just a bit better in the world.” Simmerson, a champion motorcycle racer and racing instructor, realized he could combine his longtime love of motorcycles with his newfound motivation to make a difference.
COMMITTED TO THE KIDS The first All-Star Ride for Life was held in 2000. “As long as I’m alive, the ride will continue,” says Simmerson, who is married with two grown stepchildren and a four-year-old grandson. “The looks on kids’ and parents’ faces when they see this hoard of bikers come roaring in to Duke Children’s is something you have to see in person to believe. They can’t believe that all these bikers that they don’t even know came to see and support them at the hospital.” Simmerson’s commitment to making a difference for the kids at Duke Children’s was recognized at last April’s Duke Children’s Gala, when he was awarded the inaugural Duke Children’s Hero Award. And the 19th Annual Ride for Life was a success, raising over $22,000 for the hospital and featuring 82 bikes and 106 riders, all of whom journeyed to Duke Children’s to support the kids. The ride has raised over $290,000 for Duke Children’s since its inception, and Simmerson looks forward to breaking the $300,000 mark at next year’s 20th Annual All-Star Ride for Life. Every rider who attends the All-Star Ride for Life receives a shirt with the slogan, “Don’t hope for a miracle, be one!” Simmerson saw a need and became the miracle that the father, and so many parents and children who come to Duke, required. Simmerson says, “If I can raise a little money or bring a smile to a child or their parents as they see a swarm of motorcycles descend on the hospital, then I will have considered mine a life well-lived.”
FEATURE
“You are committing to lifelong lifestyle eating habits.”
12
Duke Children’s STORIES
FAITH NEWSOME
Life-changing surgery gives teen new outlook on life
BY MIRIAM SAULS
14
Duke Children’s STORIES
FEATURE
PHOTOS BY ALEX BOERNER
uying a prom dress is an exciting, even iconic activity for some teens, but for Faith Newsome it was something much more meaningful. At 16, Sanford, North Carolina, native Newsome had had obesity for most of her life. But that changed the summer before her junior year in high school when she underwent bariatric bypass surgery at Duke. Newsome was the youngest patient and only the second teen to have weight-loss surgery at Duke back in 2014. Like other adolescents with obesity, she had experienced her first two years of high school watching her friends enjoy activities most teens take for granted. “I had always wanted to do organized sports, but you don’t want to be the kid on the team
that nobody wants because you’re so much slower than everybody else,” she says. “I had my surgery in June, and by August I was on my school’s tennis team.” Newsome is quick to point out that her decision to have surgery wasn’t just about pretty clothes and fun sports. She was pre-diabetic and had high blood pressure that factored in as well.
THE ISSUE OF CHILDHOOD OBESITY Weight-loss surgery doesn’t just happen by calling for an appointment and showing up for surgery. Newsome participated in the Healthy Lifestyles Program at Duke, a program that aims to help children achieve a healthier lifestyle to address weight-related health problems. Sarah Armstrong, MD, associate professor of pediatrics
“[Faith] said she wanted to grow up and help other children with these issues, and she was looking for a summer internship, so I said come work with us.” SARAH ARMSTRONG Associate Professor of Pediatrics and Population Health Sciences and Director of the Healthy Lifestyle Program
and population health sciences, started the Healthy Lifestyles Program in 2006, motivated in part by her early career experiences in pediatric primary care in Baltimore. “I knew how to deal with ear infections and colds, but I didn’t know what to do with the obesity I kept seeing,” she says. She started researching the issue and eventually came to Duke to start a childhood obesity program. “We get asked what causes childhood obesity, and the answer is that there is not one smoking gun,” she says. “In the majority of cases, it is not a single gene that causes obesity.” According to Armstrong, evidence suggests some epigenetic modifications happen (the mechanism in which genes may be switched on or off), as well as environmental factors and factors related to the gut microbiome. Adolescent patients may be treated with lifestyle modifications, specific dietary protocols, or medication to help manage weight. And for the last six years, there has been the option of surgery at Duke as safe protocols of adult surgery have been adapted for youth. Surgery has been increasing. From one or two a year early on, there are 15 to 20 adolescent patients in the surgical pipeline at Duke now, according to Armstrong. The procedures have gotten better, and a new technique, the vertical sleeve, has been introduced, so it’s much less expensive and has fewer side effects. Armstrong also advocates with insurance companies to make surgery even more widely available.
Newsome gives back to others by working with kids in the communitybased wellness program, Bull City Fit.
“We developed a screening process that we felt was safe and comprehensive to make sure the child is physically and emotionally ready for the procedure,” says Armstrong. Families are required to work with them six months prior to surgery to demonstrate the ability to make good lifestyle and dietary choices and adhere to them. While there is no age requirement, maturity is key. Newsome appreciated the process. “When you’re younger, there’s a little bit of naivety that you’re going to have the surgery and then you’ll be just like your friends and won’t have to worry ever again, but that is the opposite of what happens. You are committing to lifelong lifestyle eating habits. “I still gained my freshman fifteen when I got to college like everybody else, but when you’ve lost 100 pounds and you watch the scales go up, it is terrifying. I didn’t really get a grip on a healthy routine until I moved into my own apartment. Now I’m very confident because I have my own food.”
A CHANCE TO GIVE BACK
As a volunteer with Bull City Fit, Newsome serves as a source of encouragement for kids, playing alongside them during sports.
Newsome and Armstrong still talk. “Faith reached out to me and said, ‘I know I’m not in the pediatric world anymore, but I’d still like to stay in touch with you guys,’” says Armstrong. “She said she wanted to grow up and help other children with these issues, and she was looking for a summer internship, so I said come work with us.” So Newsome spent the summer at the Healthy Lifestyles Clinic developing an adolescent patient support and advocacy program. She talked to adolescent medicine
“I’m trying to be outspoken in the hope that somebody will feel a little less alone.” FAITH NEWSOME
2-19 years old
16.9% o
’09-’10
18.5% o
o
16.9% o
17.2%
’11-’12
’13-’14
’15-’16
In 2016:
35.1%
of children age 2-19 were overweight, up 4.7% since 2014
41.5%
of teens 16-19 were overweight
14.2%
of boys age 2-5 were obese, up 8.5% since 2014
HOPE AND A VOICE Newsome’s dream as a junior psychology and journalism double major at UNC-Chapel Hill is to partner with physicians and dieticians to treat adolescent obesity. She could have gone off to college and never mentioned her
weight-loss surgery, but she feels she has a
“I never take for granted the gift of weight-loss surgery because I can do things now I would have never dreamed of five years ago.” FAITH NEWSOME
“I’m trying to be outspoken in the hope that somebody will feel a little less alone. I know childhood obesity is rampant in America, but I wasn’t really friends with anybody else who dealt with weight issues, so it was really isolating,” she says. “What I’m trying to do with this advocacy group is to give that sense that you’re not alone. “After surgery, I felt like I finally had the freedom to be myself because there were so many things I had held myself back from. “Weight-loss surgery changed my life. I have hope and I have a voice,” she says. “I never take for granted the gift of weight-loss surgery because I can do things now I would have never dreamed of five years ago.”
16
Duke Children’s STORIES
SOURCES: National Health and Nutrition Examination Survey, 2007-2016
YOU CAN SUPPORT programs like the ones that helped Faith. Go to gifts.duke.edu/dch or use the enclosed envelope.
TO SCHEDULE AN APPOINTMENT
unique experience to share.
Patient Abby Young (center) with Center Directors Michael Freemark and Laura Page
Duke Launches New Pediatric Thyroid Center BY BERNADET TE GILLIS
F Faith Newsome aims to offer hope and a voice for young people with obesity.
at the Duke Pediatric Thyroid Center, call 919-684-8361.
KEN HUTH
FEATURE
TRENDS IN CHILDHOOD OBESITY
specialists about how their patients would best benefit from a program and has also been working with kids at Bull City Fit, the community outreach arm of the Healthy Lifestyles Clinic that provides free fitness and nutrition programming for patients and their families. “I had an unbelievable summer full of growth and opportunity,” says Newsome. “I met so many people who have been excited about what I’m doing.” She has presented to local and even national obesity research and support groups.
or the first time, children with thyroid cancer, thyroid nodules, and other related thyroid conditions have the opportunity to get streamlined care at Duke, thanks to the newly launched Duke Pediatric Thyroid Center. Located on the second floor of the Children’s Health Center, the thyroid center opened in September and offers patients a multidisciplinary ap-
proach to care. Led by two pediatric In addition to caring for children “The center ensures endocrinologists, Michael Freemark, with thyroid cancer and thyroid that children and MD, and Laura Page, MD, the spenodules, the center also treats chilteenagers will cialized team includes an endocrine dren who are at an increased risk for get coordinated, surgeon, two additional pediatric thyroid cancers, such as those with consensual care surgeons, a pediatric geneticist, genetic conditions that predispose and the opinions of and a pediatric radiologist, all who them to thyroid cancer and children experts in a variety have expertise in the evaluation and who have been treated with radiaof fields.” care of children and adolescents tion for non-thyroid cancers. with medical and surgical thyroid While thyroid cancer is uncomMICHAEL FREEMARK disorders. In addition, a liaison with mon, Page says that the incidence Codirector of Duke Pediatric Thyroid Center the Division of Pediatric Oncology of the cancer is increasing. Physiprovides a support network for cians are not sure why. “There was children with thyroid cancer. some speculation that the number According to the center’s codirecof thyroid cancers was increasing tors, Freemark and Page, the Duke Pediatric Thyroid just because of increased detection,” says Page, an Center is the only pediatric thyroid center between assistant professor of pediatrics. “But the current Washington, DC, and Florida. There are fewer than belief is while there is increased detection, there are 10 such centers in the country. actually more cancers as well.”
BOUNCING ALONG
Duke Children’s STORIES
18
Patients can expect an overall improved experience at the new center. A major benefit is that they will be able to see the same providers throughout their care. “The center ensures that children and teenagers will get coordinated, consensual care and the opinions of experts in a variety of fields,” explains Freemark, who is also > Data has shown that the chief of Duke’s Division of incidence of thyroid cancer Pediatric Endocrinology. in children, adolescents, and “Their care will be ongoyoung adults is increasing ing and continuous and approximately 1 to 3 percent per year. will not be interrupted or cut short. Patients will >Thyroid nodules found in children have a higher risk be followed by the same of malignancy compared to physicians throughout.” adults. Thyroid cancer appears Before the center to behave differently in opened, thyroid cancer children than in adults, with patients had to navigate children having an increased likelihood of the cancer a complex and somespreading to the lymph nodes times confusing process, and other parts of the body. says Freemark. “It was Despite this, thyroid cancer unclear to any referring prognosis in children is better physicians, patients, than in adults. or families who they should call and how that care was going to be coordinated. Now, a single phone call will set into play an entire series of consultation efforts and coordinated work that will be designed to provide the most effective care for the child.” Page adds, “This center requires only one referral by an outside physician that then reaches our entire team.” Future plans for the center include adding a research component. Freemark, Page, and other members of the multidisciplinary team hope to build a database of all children seen at the center. Freemark says, “We’re going to use our patient experience from the center to understand how to better care for children with thyroid problems.”
Our community supporters put the FUN in fundraising!
A Celebration of and for Foster Families
and offered a day of celebration
Earlier this year, the Duke Children’s Foster Care Clinic attended the Triangle Foster
Litem Program North Carolina
Parent Association’s National Foster Care Month kickoff at Ponysaurus Brewing in Durham.
County Department of Social
The event provided information on volunteer opportunities within the foster care system and how to become a foster parent,
for area foster families. Pictured are Shirley Harley-Smith, district administrator of the Guardian ad
Getting Crafty for Duke Children’s
Get Involved: Volunteer with the Duke Children’s Development Office
The parking lot at Fuquay-Varina High School is a little more colorful thanks to the school’s Paint Your Spot fundraiser for Duke Children’s. Juniors and seniors could donate $20 for the opportunity to create their own custom-painted parking spot. Together the students raised $3,040 for Duke Children’s. Madison McCart and Student Body President Erin Stone presented the check on behalf of the students.
Volunteers help our Children’s Miracle Network Hospitals team during a thank you visit to associates at the Durham Costco! The Duke Children’s Office of Development has volunteer opportunities throughout the year to fit everyone’s interests and availability. Each month we rely on volunteers to lend a hand to a variety of projects—both in front of a crowd and behind the scenes. With the help of dedicated volunteers our events and campaigns are more successful. If you’re interested in volunteering, contact Kelly Partner at kelly.partner@duke.edu.
Judicial Branch; Deborah Cousin, social worker from the Durham Services; North Carolina First Lady Kristin Cooper; and Lindsay Terrell, MD, from the Duke Children’s Foster Care Clinic.
Birdies for Babies The 2017-2018 Duke Women’s Golf Team, led by Team Captain Virginia Elena Carta, raised over $10,000 for the Duke Children’s Intensive Care Nursery and Pediatric Intensive Care Unit. Team supporters pledged 50 cents or more for every
birdie, eagle, albatross, and hole-in-one made by the team during its competitive season. The team amassed a total of 510 birdies throughout the season, knowing that every birdie would translate into more funds for the patients at Duke Children’s. Thank you, Duke Women’s Golf, and go Duke!
MAKING MIRACLES
20
Duke Children’s STORIES
SUPPORTERS
A Super Day for Super Kids!
Children’s Miracle Network Hospitals partners work to raise funds for patient care, treatment, and medical research at Duke Children’s.
Earlier this spring, 75 Children’s Miracle Network Hospitals corporate partners, patient family members, and members of the Duke Children’s team came together to cheer all things Children’s Miracle Network Hospitals while also celebrating the incredible patients that we are fortunate to treat at Duke Children’s. Attendees gained inspiration and tools for their fundraising initiatives and heard remarks from Ann M. Reed, MD, physician-in-chief of Duke Children’s; Durham City Council Member Charlie Reece; and Meaghan Duff, from the Dunkin’ Donuts Joy in Childhood Foundation. The Joy in Childhood Foundation also presented a Superheroes Rule the Runway spectacle, an event that celebrated the power and heroic bravery of children who have battled or are battling an illness. The foundation donated Starlight gowns to Duke Children’s, and five patients got to create superhero personae, had their faces painted, and modeled their alter egos on a red-carpet runway. Duke Children’s friends from MIX 101.5 hosted this special extravaganza, and kids and attendees alike all had an inspiring time honoring the unique bravery of kids battling illnesses.
Publix Stores Raise the Bar in 2018 Six new Publix stores recently opened in our area, and they opened just in time for the 2018 Children’s Miracle Network Hospitals fundraising campaign. These stores joined six existing locations that raised over $18,000 for Duke Children’s in 2017. The stores held a customer-ask campaign and worked to create a festive atmosphere during the fundraiser, decorating the aisles of their stores and holding bake sales and pie-in-the-face contests, like the associates pictured. Thanks to the hard work and dedication of the employees, Publix raised $61,957.42 this year—an incredible 242 percent increase from the previous campaign. Thank you to all 12 of our Publix stores and to the store associates for their support!
A Blizzard in August On August 2, Dairy Queen locations brought some “chill” to the August heat through Miracle Treat Day 2018. The annual event is a national fundraising effort in which participating Dairy Queen restaurants can give back to their local Children’s Miracle Network Hospital. Locations that signed up to take part in the day pledged to donate a portion or all of
the proceeds from every Blizzard Treat sold to Duke Children’s. Many of these Dairy Queen locations also sell Miracle Balloons for the month leading up to Miracle Treat Day to raise even more money for Duke Children’s. Thank you to our incredible Dairy Queen partners across the area—from the Triangle to the Triad to Wilmington and beyond—for hosting such a tasty day and giving back to help kids treated at Duke Children’s.
Costco Achieves New Heights for Duke Children’s Fundraising Throughout the month of May, Costco warehouses around the United States and Canada sold Miracle Balloons to raise money for their local Children’s Miracle Network Hospitals. Six Costco warehouses in North Carolina raise money for Duke Children’s—Winston-Salem, Greensboro, Durham, Apex, Raleigh, and
Wilmington. In 2017 these locations raised a total of $228,000. Thanks to the hard work and dedication of the Costco employees at these six locations, this year’s fundraising surpassed $274,000! New this year, each Costco warehouse raised funds in honor of a local Duke Children’s patient ambassador. These six children became the face of their neighborhood warehouses, inspiring members and employees alike in the fundraising efforts.
Ace Hardware Bucket Day More than 2,300 Ace Hardware stores helped make customers and kids happy during their annual Children’s Miracle Network Hospitals Miracle Bucket Days event in August. A total of 22 local Ace Hardware stores participated, and together they raised over $5,000 through the sales of special edition five-gallon miracle buckets. Ace Hardware of Rolesville went above and beyond by participating in the Ace Hardware Miracle Bucket display contest. The Rolesville store created an incredible smoking spaceship, which rocketed them to a national vote-off with nine other stores. Thanks to the votes of Duke Children’s fans and friends, Ace Hardware of Rolesville’s display won second place, and Duke Children’s will receive an additional $5,000 to help support the patients and physicians at the hospital!
Non-Profit Org U.S. Postage PA I D Durham, NC Permit No. 60 Duke University Health System, Inc. 710 W. Main Street, Suite 200 Durham, NC 27701
SAVE THE DATE
2019 Duke Children’s Gala SATURDAY, SEPTEMBER 21, 2019
HOW YOU CAN HELP You can support lifesaving research and patient care at Duke Children’s. Make a gift any of these ways:
1. Use the enclosed envelope
2. Use the secure
online form at gifts.duke.edu/dch
3. Call us at
919-385-3138
New Children’s Giving Website Read about it on page
5
Washington Duke Inn & Golf Club Durham, North Carolina giving.dukechildrens.org
24th Annual MIX 101.5 Radiothon for Duke Children’s DECEMBER 12 -13, 2018 DUKE CHILDREN’S HEALTH CENTER DURHAM, NORTH CAROLINA Listeners are welcome to support our patients during Duke Children’s largest single fundraising event. We hope you tune in!