Believe
WINTER 2024
BENCH TO BEDSIDE
How Pediatric Discovery Informs Care
5 Ways We Support Children’s Mental Health
Volunteer Leaders Improve the Patient Experience
We’re lucky to have doctors nearby who are at the forefront of this lifesaving research.”
— Dan, Abby’s dad
Letter From the President & Chief Executive Officer
Together, we are building healthier lifetimes, strengthening families and creating greater health equity in our community.”
― Michelle Riley-Brown
One of my favorite things about being CEO of Children’s National Hospital is the opportunity to see our care teams in action. I recently visited one of our operating rooms and joined a surgeon as he spoke with a patient’s family following a procedure. Through an interpreter, the anxious mother said she had not been sleeping out of worry for her child. The surgeon assured her that everything had gone well and her child would be fine. I could see the relief on her face as she began to cry.
That moment was just one example of the compassionate care that attracted me to Children’s National and that I see validated every day.
In my first 1.5 years as CEO, I had hundreds of interactions that affirmed how we show up consistently for patients and families. As an independent pediatric hospital, an academic and research center and a central provider of regional care, Children’s National holds many identities. It is a privilege to lead such a complex and valued institution and witness our life-changing work.
Our winter issue of Believe shares some of these stories of hope, healing and recovery. “Bench to Bedside,” our cover story, showcases the critical importance of pediatric research and innovation. Our ongoing pursuit of better treatments leads to breakthroughs that improve
care not only for our patients but for young people around the globe.
You will read how our approach to improving health and well-being starts at the earliest possible moment. The new Zickler Family Prenatal Pediatrics Institute, made possible by a transformational gift, will bridge significant gaps in care for women with high-risk pregnancies and their babies.
The growing mental and behavioral health crisis also demands that we do more. This issue highlights how meaningful interventions can help kids at every age navigate mental health challenges and thrive.
I am proud that for the eighth straight year
There’s nothing better than seeing the impact our research is having on an individual patient. It is so gratifying to hear from parents about how their kids are making progress thanks to a protocol we developed.”
― Andrew Dauber, MD, MMSc Chief of Endocrinology
Believe
WINTER 2024
EDITORIAL
Jean Bratman
Georganne Coco
Jessica Danaceau
Kitson Jazynka
Cathy Madison
Jennifer Morrison
Margetta Thomas
Dan Wilcock
Maura Zehr
PRODUCTION AND DESIGN
Christina Aycock
Alex Bozoghlian
Jennifer Littrell
Rachel Phillips
Allison Chess Ruiz
CONTRIBUTORS
Ali Chope
Meagan Davis
Lauren Scheinert
Leslie Schrader
Morgan Worley
PHOTOGRAPHY
Tracey Brown
Kenson Noel
Children’s National Hospital Foundation works with generous donors to advance the hospital’s mission. Gifts from individuals, corporations, foundations and community organizations fund world-class care and research for kids in the Washington, D.C., region and beyond.
For Believe magazine’s digital experience please visit childrensnational.org/ believe or scan the QR code
ONLINE childrensnational.org/giving FACEBOOK.COM/childrens.national X.COM/childrensnatl INSTAGRAM.COM/childrensnational LINKEDIN.COM/company/ childrens-hospital-foundation
Cover: Abby, Children’s National patient
Dr. Andrew Dauber in the laboratory at Children’s National
6 MAKE A DIFFERENCE Bench to Bedside How Pediatric Discovery Informs Care
Patients and families share how breakthroughs at Children’s National Research Institute provide hope, improve their care journeys and change their lives.
16 MEET THE MOMENT 5 Ways We Support Children’s Mental Health
Children’s National is committed to providing care for kids’ mental health and well-being when and where they need it. We strive to improve access to comprehensive care and help patients build resilience so they can thrive.
FEATURES
Paying It Forward With Passion
Veronica’s epilepsy care taught her about empathy and the power of fun to help kids heal. She applies all she has learned to her volunteer work at a therapeutic horseback riding program.
26 CREATE A LEGACY Delivering Healthier Starts
A transformational gift from Judy and Leo Zickler will set a new standard of care for mothers with high-risk pregnancies and their babies. The Zicklers’ generosity leads us into the next frontier of prenatal pediatrics.
30 LEAD THE WAY
Meet Our New Chief Data and Artificial Intelligence Officer
Alda Mizaku’s new role is the first of its kind at Children’s National. She shares her perspective on artificial intelligence’s potential for improving children’s health and how we care for patients.
38 GIVE BACK YOUR OWN WAY
Lucie Bakes Unicorn Food
Lucie’s successful surgery inspired her creative way to help other patients. “Children’s National did such a good job taking care of me and even made me want to become a doctor one day,” she says.
40
IN MEMORIAM
Shelby Tudor
We remember a colleague who lived life with joy and a passion for our mission.
HAPPENINGS
42 Endowed Professorships Advance Discovery
Generous, visionary donors enabled Children’s National to announce several new professorships in 2024.
43 An Award for Exemplary Nursing
Our nurse navigators earned a prestigious honor for their compassion and care excellence.
Corporate Appreciation
A September reception celebrated champions for children’s health.
44 Race for Every Child
Our community came together on Oct. 19 to raise more than $1.85 million for patients and families.
Heartbeats of Hope
Grateful families combine efforts to raise millions for our new Heart Research Institute.
Opera in the Atrium
Patients, families and hospital staff enjoyed a healing performance by Opera Italiana is in the Air.
Book by Book
Allie Slocum joined Children’s National six years ago to help launch our Family Resource Center, or library. “Every kid deserves that calm, quiet connection that reading a book together brings,” she says.
Volunteer Leaders Improve the Patient Experience
Parents and former patients bring their experience and leadership to our Patient and Family Advisory Council to help make the hospital a better place for everyone.
45 Holidays at the Hospital
Winter traditions raise spirits!
46 A Patient’s Perspective
Emelia shares some of her favorite things and how expert eye care allows her to see them better.
BENCH TO BEDSIDE
How Pediatric Discovery Informs Care
Pediatric science can transform the smallest spark — a molecular observation in one child’s laboratory sample — into a remarkable discovery that benefits children everywhere. Investigators in the Children’s National Research Institute pursue these sparks every day.
Novel therapies unlock new beginnings for kids with once incurable diseases. Artificial intelligence (AI), gene editing and advanced robotics are changing the game. “We are elevating the evidence and translating it to the bedside to improve lives,” says Nathan Kuppermann, MD, MPH, who in September became our new chief academic officer and chair of pediatrics.
Dr. Kuppermann spent 29 years at UC Davis Health, with 19 years as chair of emergency medicine. The last two years he also served as associate dean for global health. He cites communication, teamwork and diversity as crucial elements of scientific success. “Philanthropy also plays a fundamental role,” Dr. Kuppermann says. “Partnering with passionate donors is a joyous part of what we do.”
He encourages our physician scientists to keep the impact for children at the center of every investigation. One of his favorite expressions comes from the late science writer Paul Brodeur: “Statistics are human beings with the tears wiped away.”
The following stories represent the human face of scientific journeys at Children’s National.
Children’s National Research Institute A SCIENTIFIC POWERHOUSE
2,000+ active clinical research studies
1,108 publications
>600 faculty and staff
Data from 2022-2023 academic year
~$100M in research support
236 principal investigators
132 issued patents
Dr. Nathan Kuppermann in the laboratory at Children’s National
Supporting Healthier Hearts
The Children’s National Heart Center is leading the way to find new and better treatments for cardiac problems as early as possible, during pregnancy and just after birth.
These critical stages are vital for a child’s lifelong heart health. “The innovations we are pursuing have the potential to transform the landscape of cardiac treatment,” says Wayne Franklin, MD, FACC, Heart Center senior vice president.
“By focusing on the earliest stages of life, we can significantly alter the trajectory of children’s heart health, creating a lifetime of possibilities.”
Mending a Broken Heart
Abby, who just turned 1, is a smiley baby who loves to play peek-a-boo with her sister, Ruby. “We marvel that she is perfectly healthy,” says her father, Dan. He and wife Kelsey love to linger over ordinary moments. Her given name, Abigail, means “a father’s joy.”
When Kelsey was 18 weeks pregnant, she and Dan learned their baby had signs of heart injury, which led to a dangerous rhythm problem called “complete heart block.” The previous year, their infant son died from the same condition, which was discovered too late. The family prepared for another loss. But early detection of the problem and advanced care that started in the womb made all the difference for Abby. Children’s National prenatal cardiology experts began monitoring Abby’s development from the earliest possible moment and were able to intervene before devastating injury occurred.
Before Abby’s diagnosis, in light of the previous pregnancy, Kelsey enrolled in a clinical trial. The research sought a better way to identify and treat the heart condition Abby was at risk for. Anita Krishnan, MD, a pediatric cardiologist and clinician scientist,
Abby with her sister and parents
Dr. Wayne Franklin with a patient
Scan to watch a video about Abby and how our pediatric heart research and care saves lives.
met the family during their initial visit and arranged a monitoring plan that included frequent visits to make sure Abby’s heart was working normally. Soon after Kelsey’s first visit, doctors noted a problem.
Mary Donofrio, MD, FAAP, FACC, FASE, a leading pediatric and fetal cardiologist and The Van Metre Companies Professor of Fetal Cardiology, led the team that initiated lifesaving in utero therapy, followed Abby’s progress in the womb and planned for her arrival. The goal was to extend the pregnancy for as long as possible so she would survive birth and the heart surgery that would follow.
Abby’s prognosis improved as weeks passed. As a newborn, she would be a candidate for an infant pacemaker the size of a penny. It would help regulate her heartbeat and enable her to live a “normal” life.
Kelsey and Dan met with Charles Berul, MD, emeritus chief of Cardiology and The Van Metre Companies Professor of Cardiology, and his team. There was uncertainty about whether Abby’s heart was too damaged for the pacemaker to work, but Dr. Berul, who has spent decades refining designs for this type of device, expressed confidence. Abby would be the world’s 27th infant, and the fifth at Children’s National, to have one implanted.
“To have him say, ‘We’ve developed this device, we know what we’re doing, all of the other babies who have had this are doing well and we’ll be right here in the room with you,’ was pretty incredible,” Dan says.
Kelsey’s monitoring in the clinical trial and the innovative
therapy that started before birth likely helped Abby survive until she was born at 32 weeks at MedStar Washington Hospital Center. Dr. Donofrio and the Children’s National care team were in the delivery room and rushed Abby to our Cardiac Intensive Care Unit. Dr. Donofrio arranged for mom and daughter to pass in the hall on the way. “I heard her cry and felt relief for the first time,” Kelsey says.
Abby’s pacemaker enabled her heart to beat properly on its own. She soon moved to our Neonatal Intensive Care Unit. In two months, she went home with her family. Kelsey and Dan monitor her pacemaker with a handheld device that sends reports to her team at the hospital.
We’re lucky to have doctors nearby who are at the forefront of this lifesaving research. Children’s National took care of us with a great deal of humanity. Now we can focus on being a family.”
― Dan, Abby’s dad
Pericardial port for pediatric pacemaker delivery, developed by Dr. Charles Berul and team
Genomics Solves Puzzles for Patients with Rare Disease
Most patients with rare diseases still lack answers. Families may undergo years of searching in an often painful diagnostic odyssey. Research by Seth Berger, MD, PhD, a medical geneticist in our Center for Genetic Medicine Research and Rare Disease Institute, aims to harness technologies to shorten this journey and connect families with help sooner. Dr. Berger often publishes accounts of medical mysteries he has solved.
It’s truly stunning what genetic sequencing can find. The outcomes can be life-changing. These cases with life-altering diagnoses don’t come along every day, but when they do, they make the hunt to find answers all the more worthwhile.”
― Dr. Seth Berger
Dr. Seth Berger (right) at Children’s National Research & Innovation Campus with pediatric resident Kirkland Wilson, MD
James Finds a Path to Health
James, age 15, struggled a lot before a researcher at Children’s National found the needle in the haystack of his genome. Four years ago, he could not walk in a straight line down the sidewalk. Enjoying Halloween trick or treating in fall or a beach hike in summer? Out of the question. His gait had become increasingly unsteady.
Everything changed the day that Dr. Berger took a look at James’ exome — a subset of the genome that can reveal mutations — to help his family find answers. Dr. Berger used advanced biochemical testing, genomic sequencing and AI to sift through the patient’s data. He found the problem: dopa-responsive dystonia, a genetic condition seen in only one out of every 1 million children. In fact, James’ case was even rarer because he had an unusual recessive form.
This discovery led to a cascade of positive events that transformed
James’ life for the better. Thankfully, his condition has a known treatment. Laura Tochen, MD, who directs the hospital’s Movement Disorders Program, started James on carbidopa-levodopa, a drug combination used to treat Parkinson’s disease and other neurological disorders. Within two hours, he showed improvement
and his gait was almost normal. Today, James leads an active life. On vacation last summer, he went rock climbing on real rocks for the first time. He loves mountain biking and running along the Maine coast. “He is very proud of what he can do now,” says his father, Jeff. “We are so thankful for the team that helped get him here.”
James visits Maine in 2024; Below: James (left) rides mountain bikes with his brother, Nicholas, and mom, Shannon; Inset: James’ gait before and after treatment
Rewriting the Script for Sickle Cell Disease
More than 100,000 Americans have sickle cell disease, an inherited blood disorder that can cause excruciating pain crises and shorter life expectancies.
Children’s National has one of the largest sickle cell programs in the United States. We are pioneering treatments and provide specialized care to about 1,500 patients each year. We participate in clinical trials to improve outcomes, shorten treatment time, reduce complications and minimize the need for opioids and chemotherapy.
In recognition of our clinical and research excellence, Children’s National was one of a few U.S. pediatric hospitals selected to offer two promising new FDAapproved gene therapies.
Hematologist Robert Sheppard Nickel, MD, leads a study to reduce toxicities in bone marrow transplants.
“Years of development led to these curative therapies,” Dr. Nickel says. “I hope in the future we can safely cure more children with sickle cell disease.”
“The future looks promising to revolutionize the lives of our patients and make these therapies accessible worldwide,” says Andrew Campbell, MD, director of our Comprehensive Sickle Cell Disease Program.
Dr. Andrew Campbell with patient Jayden
Kendric and Nasir Find Hope
In May 2024 at Children’s National, 12-year-old Kendric of Clinton, Maryland, became the world’s first patient with sickle cell disease to begin a commercially approved gene therapy that could dramatically reduce or even eliminate his pain. It involved extracting his bone marrow stem cells; genetically modifying them in a specialized lab to reduce the risk of sickling; and then, after chemotherapy, infusing them back into his bloodstream.
Expert, compassionate care empowered Kendric to understand the science behind his treatment and chart a path to recovery. “My care team taught me how to deal with my disease and everything that I need to know for the future,” he says. “They gave me hope that I could be cured.”
Nasir, age 20, spent his childhood waiting to find a match for a stem cell transplant to address his sickle cell disease. Finally, in 2023, at Children’s National, he found an answer in gene therapy to alter his own cells.
Due to painful episodes and the need for frequent blood transfusions, both Kendric and Nasir missed out on a lot of school, important moments with friends and simply being kids. Now, they can explore a world in which patients like themselves can overcome this disease and reclaim their health.
“I have all of this oxygen and energy that came out of nowhere,” Nasir says. “It’s really a new life. I feel reborn.”
“The network of doctors at Children’s National gave us reassurance and lots of hope,” says Kendric’s mom, Deborah. “They made us feel like family. We are in awe of how quickly things moved and how much compassion they have shown us.”
I have all of this oxygen and energy that came out of nowhere. It’s really a new life. I feel reborn.”
― Nasir
In 2023, support from the Founders Auxiliary Board enabled us to open a first-of-its-kind sickle cell clinic to holistically help patients manage pain. Kids receive care to improve the full picture of their health.
Scan to watch a video about our Sickle Cell Disease Program.
Kendric receives care at Children’s National
Nasir with his care team; Right: Nasir with his 2024 Sickle Cell Advocacy Award
Innovative Treatment for Growth Disorders
Dr. Andrew Dauber, chief of Endocrinology, leads a program that brings together comprehensive resources for children with rare genetic growth disorders, including basic science, translational and clinical research.
“Discovery is important, and research gives us many answers,” he says. “But what we do with those answers is what really matters. There’s nothing better than seeing the impact our research is having on an individual patient. It is so gratifying to hear from parents about how their kids are making progress thanks to a protocol we developed.”
Dr. Andrew Dauber with a patient
Mia Thrives With the Right Approach
Middle schooler Mia loves to dance, practice gymnastics and hang out with friends. She was born in Croatia with hypochondroplasia, a genetic disorder that slows cell growth and causes short stature and limb shortening.
She struggled in kindergarten because she was so small. “Kids can be very mean if you’re different,” says Mia’s dad, Ivan. “For years, we took Mia to different specialists in Europe without getting the help she needed. I researched endocrinologists all over the world. They all pointed us to the United States.” This led Ivan to Children’s National and Dr. Dauber.
Dr. Dauber invited the family to the U.S. to participate in a clinical trial that was to start very soon. “I knew this was our only chance,” said Ivan, who rushed to bring his family to Washington, D.C., for the initial screening appointments. They later returned for more measurements, Mia’s first dose of medicine and a three-month supply to go. The family returns to Children’s National every six months.
In Mia’s first year, she grew more than 3 inches. Her arms also grew longer. “Dr. Dauber is probably the best doctor in the world,” Ivan says. “He is like a friend to Mia and has helped us make sure she has as normal a life as possible. This growth, including in her confidence, has been life-changing for her.” The family
relocated to the U.S., and Mia will continue in the trial until she reaches puberty.
“Now, the difference between Mia and other kids is much less,” Ivan says. “She makes new friends
more easily and is a happy, happy kid. As for me, I want to cry for how happy I am. Dr. Dauber and Children’s National made it all possible.”
Dr. Dauber is like a friend to Mia and has helped us make sure she has as normal a life as possible. This growth, including in her confidence, has been life-changing for her.”
― Ivan, Mia’s dad
Mia practices her dance moves
5 Ways We Support Children’s Mental Health
It takes a village to support kids’ mental health. Children’s National has built a community of healing that spans all aspects of behavioral health to meet the growing need for this care. Our inpatient programs care for children in crisis. Outpatient services offer comprehensive, ongoing treatment that builds resilience. Mental health experts in our primary and specialty clinics provide early interventions and help children cope with illness and injury.
We advocate for national and local policies that improve access to care and lead to more funding for programs and insurance reimbursements to providers. Here are some of the ways we nurture the mental health and well-being of kids and their families.
1-
SCREENING PARENTS FOR STRONGER STARTS
Healthy futures for children begin with strong, healthy families. Parental wellness is a critical component. Nearly half of all parents with newborns in our Neonatal Intensive Care Unit (NICU) have symptoms related to anxiety and mood disorders, including depression. About one-third of parents with infants who come to the Emergency Department (ED) experience these symptoms.
Philanthropic support from the Linda Rabbitt and John Whalen Family Foundation enabled us to expand vital mental health screenings for parents in our NICU and ED and during follow-ups with social workers and community health workers. We launched this program as part of the Clark Parent & Child Network.
Screening also continues during routine primary care checkups for babies at 2, 4 and 6 months old. NICU parents who screen positive for anxiety or mood disorders meet with a member of our team who provides resources. This includes a referral to a psychologist while their baby is still in the hospital. We offer continued support during monthly follow-up visits in the NICU.
Whole Bear Care’s timely access to clinicians integrated within primary care makes it an impactful program for families.”
― Dr. Donna Marschall
Patient Bailey, 5 months old, in our NICU
Having a newborn is stressful. Emotional and psychological difficulties challenge NICU families and complicate caregiving. After experiencing this firsthand, we felt it was critical to support the urgent mental health needs of these families.”
― Lauren Rabbitt Aiello (on behalf of the Rabbitt Whalen Family Foundation)
2- EASY ACCESS TO WHOLE BEAR CARE
Support for the whole child — body and mind — and timely, convenient mental healthcare are the cornerstones of our Whole Bear Care program. It connects children and families to behavioral health services at the same location as their primary care providers at the Diana L. and Stephen A. Goldberg Center for Community Pediatric Health. The team provides care to more than 4,500 kids annually. In addition, our clinicians provide thousands of consultations to care providers each year.
A primary care doctor who identifies a concern during a
routine checkup or sick visit can seamlessly refer a patient to a psychologist for evaluation. Families receive immediate or short-term intervention while the psychologist works to connect them with longerterm care in their community. Bilingual clinicians support Spanishspeaking families.
A warm introduction by a primary care physician that a family already knows and trusts eases the process. It decreases the stigma of seeking mental healthcare and resolves problems for children faster.
“It is a huge resource for a family to have contact with a behavioral health professional in their medical home,” says psychologist Vanessa Fuentes, PhD. “We provide care for
kids up to 22 years old. I’m glad I can equip families with resources and help guide them towards mental wellness.”
“The mental health landscape has become increasingly more challenging to navigate,” says Director Donna Marschall, PhD.
“Whole Bear Care’s timely access to clinicians integrated within primary care makes it an impactful program for families.”
Generous donors to Whole Bear Care include Pennie and Gary Abramson, the Walter Brownley Trust, Alice B. Clark, the A. James & Alice B. Clark Foundation and the George L. Shields Foundation.
3-
EARLY CHILDHOOD TEAM HELPS FAMILIES FIND JOY
Cassi McCants, PsyD, believes in the power of helping families build structures that lead to better futures. As a psychology fellow at our Takoma Theatre location, she provided therapy to help children process trauma and overcome behavioral challenges, such as angry outbursts, and built cooperation related to daily tasks, sometimes over a 30-week span. She focused on teaching kids skills as building blocks and problemsolving tools that they will use throughout their lives.
“The best part for me is seeing positive changes in the family’s relationships,” Dr. McCants says. In our NICU, Dr. McCants provided immediate support to new
mothers who screened as high risk for perinatal mood and anxiety disorders, particularly postpartum depression. She worked with a mom whose newborn coded, or nearly died, four times in five days. The mom was able to manage her stress enough to go home for a shower and return recharged.
Dr. McCants became a full-time psychologist at Children’s National in 2023. She continues her work with the Early Childhood Behavioral Health Team and participates in research to improve the socialemotional well-being of NICU families and staff members. “It’s about helping parents do their best during challenging times, enabling them to discover joy in their children and getting the earliest start to help a child to be successful as a whole,” she says.
It’s about helping parents do their best during challenging times, enabling them to discover joy in their children and getting the earliest start to help a child be successful as a whole.”
― Dr. Cassi McCants
Dr. Cassi McCants with a patient at our Takoma Theatre location
The Sky Is the Limit for RJ
By Richard, RJ’s dad
I have worked for years in a public school system with kids who have autism. I thought this had prepared me for anything as a parent. But the day doctors at Children’s National diagnosed my now 7-year-old son RJ with autism and attention deficit hyperactivity disorder (ADHD), I couldn’t breathe. I wondered about his future and how he’d adapt.
Care from the Early Childhood Behavioral Health team eased my mind. The approach has been delicate. RJ’s team mapped out his next steps, including occupational and speech therapy. The team helped us prepare for kindergarten and advocated for him at school before he started. It also supported us as parents.
My wife, Njeri, and I attended support groups, including one for families with recent autism diagnoses. We attended another that focused on behavior at a time when RJ had an uptick in meltdowns. These groups have provided resources, suggestions for strategies that we practice daily at home and moral support. They care for RJ and support us as a family.
Thanks to his Children’s National team, RJ is working through his challenges and making big improvements. I recently overheard him talk through a moment, trying to regulate himself and his emotions based on what he has learned. He told himself, ‘I have to clean up my toys. I have to listen. I can listen.’” He says hi to every person he passes on the street and loves to sing.
There will be hard days, but we are learning to be flexible and do the work. The sky is the limit for RJ.
RJ with his parents; Inset: RJ, age 5
RJ bakes with his grandmother at home
4-
HELPING CHILDREN THRIVE AFTER TRAUMA
A generous gift from Carrie and David Marriott expanded our Division of Trauma and Burn Surgery’s psychosocial team to care for children who experience severe injuries. The unit’s psychologist, social worker, care coordinator and postdoctoral psychology fellow provide comprehensive mental health services that help patients and families heal and thrive.
The Marriott’s investment also supports the research of psychologist Carrie Tully, PhD. She focuses on ADHD and burn trauma.
The team provides seamless care for patients in the hospital and outpatient clinic and created tools and new opportunities to support patient families in their recovery. A guide for teachers helps ease students’ transition back to school.
Earlier this year, the first Family Night for Burn Survivors event brought together former patients.
“Building our psychosocial team translates to more personalized care for our patients and families,” says Dr. Tully. “It also improves coordination and allows us to think big picture about effective interventions and resources.”
A patient receives wound dressing care for first-degree burns; Left: Dr. Carrie Tully
Dr. Carrie Tully meets with a patient family to address burn trauma
Compassionate Care for Adara
Adara is an outgoing 7-year-old who loves to dance and help with her baby brother. Last year, she was counting the days until she would start a cheerleading program when an accident changed her life. One night, she couldn’t sleep and found a lighter in another room. She started it and her shirt caught fire. “Adara was in flames,” recalls her mom, Rhonda. “We were in shock and frantically pat them out.”
An ambulance rushed Adara to Children’s National. She suffered second- and thirddegree burns on her chest, stomach, arm and back and was in the hospital for three weeks. The process to change her wound dressings was so painful that she often had to be sedated. Adara underwent a skin graft surgery using healthy skin from her thighs.
Our Burn Unit’s psychosocial team eased the family’s worries and supported Adara’s recovery. She received mental healthcare, books and crafts and enjoyed visits to our Bunny Mellon Healing Garden. Today, Adara is thriving. She attended the Mid-Atlantic Burn Camp in August 2024 with other young burn survivors.
“It’s important to raise awareness about these kinds of accidents since they do happen,” says Rhonda. “Thanks to Children’s National, Adara’s is a story of healing.”
Pediatric patients with burns are a vulnerable population. Studies suggest elevated anxiety, traumatic stress symptoms and higher rates of mental health disorders in the long term.
Source: BMC Public Health
Adara, right, with her sister, Qadira
5
- HELPING KIDS NAVIGATE ANXIETY
By Lilia Mucka Andrew, PhD Children’s National psychologist
Anxiety disorders are among the most common mental health problems for youth today, affecting nearly one-third of teens. This invisible force disrupts kids’ lives, making it hard for them to function, enjoy friendships and succeed in school.
We see patients as young as age 6 with severe anxiety, often showing up as stomach aches, headaches and sleepless nights. They don’t understand what’s happening or why it’s happening. They just know that they feel really bad.
Anxiety is a normal response to stress, meant to keep us safe
from danger. But some kids have a magnified response. They see threats everywhere and genuinely believe they can’t handle them. Social media plays a big role, with its endless stream of perfect images and need for “likes.” It is hard to disconnect, increasing feelings of stress and isolation.
The COVID-19 pandemic deprived children of opportunities for in-person social growth, making the existing mental health crisis worse. A 2021 study in JAMA showed that anxiety levels in children and teens nearly doubled during the pandemic. Since 2019, the number of patients seeking help for anxiety at Children’s National has doubled. This surge highlights how important our work is.
Our Anxiety Disorders Program helps these kids. We offer thorough assessments and tailored treatments. Our team combines
psychology and psychiatry so that everyone works together. We teach teens strategies to manage their emotions and thoughts, like deep breathing, mindfulness and balancing social media intake. We run groups where patients can practice their coping skills with a supportive community of peers. We also encourage kids to face their fears gradually, which helps build confidence and resilience. These are bravery missions!
Caregivers play a major role. We involve parents in treatment, educating them about anxiety and how to best support their child. We consider each family’s unique challenges. Letting kids talk about their feelings or saying validating things like, “It makes sense you feel stressed about this,” can make a big difference. Normalizing worry discussions helps children feel less alone and more understood.
Finding a Better Path
By Jaliah, a Children’s National patient, age 16
I love art, including sketching with colorful pencils and making music. Drawing and music help me feel less overwhelmed. When I was younger, people around me sometimes set off difficult feelings, like the kids at school who bullied me or when my biological mom abused me.
When I was 10, I wrote a suicide note and gave it to a friend. She showed it to our teacher who contacted my dad. He was very worried. The school recommended Children’s National. The people there were nice and said I should stay in the adolescent
With the right tools and support, young people can work through and overcome worries to lead healthier lives and thrive. These kids are not broken. They are strong, unique individuals who need help learning how to manage big emotions — that’s where we come in.
Dr. Andrew is a licensed clinical psychologist and research director of the Anxiety Disorders Program in the Division of Psychology and Behavioral Health.
I was in a dark and scary place. Now, there’s so much I want to do. I want to help others who might be feeling low.”
― Jaliah
psychology unit for a couple of weeks to get my mind together.
I was scared and nervous. I missed home and cried a lot, especially in the middle of the night. A nurse noticed that drawing and coloring helped me cope, and she made sure that I had supplies. I also did art therapy with other patients and an art therapist. Making art helped me express how I felt when I didn’t have the words. I was really mad. But as I left my feelings on the paper, I felt better. I filled a lot of sketchbooks.
Even though it was hard to be there, I felt like the staff understood me. Therapy helped, and I made friends. I felt safe and less alone. It felt good to know that there are professionals who would make sure I was OK.
I was in a dark and scary place. Now, there’s so much I want to do. I want to help others who might
be feeling low. I want to play the violin. I want to be an entrepreneur. There’s light and warmth in my life and always room for more.
Jaliah and her father speak with a Children’s National provider Inset: Dr. Lilia Mucka Andrew
Paying It Forward With Passion
Veronica, a recent high school graduate, loves to ride horses, figure skate and sing. Last summer, she started volunteering at Great and Small, a Maryland therapeutic riding center where she helps kids with special needs while they participate in horseback activities.
“I’m passionate about horses and helping these children,” Veronica says. “I love watching them progress and see the joy they get from riding.” Veronica has deep compassion for the young riders. Her own journey as a child with special needs started when she had a debilitating stroke at age 6. She spent two weeks at Children’s National, followed by a long, difficult rehabilitation.
Our specialists diagnosed Veronica with epilepsy and helped her learn to walk and talk again. “I couldn’t go to the pool or hang out with my friends much,” she says. “My parents homeschooled me because it was just too difficult for me to get to school.”
During the next two years, occupational and physical therapy enabled Veronica to graduate from a wheelchair to a walker and back to her own feet. “My physical therapists made sessions really fun,” she recalls. “We played games and they set up tight ropes, blocks to climb on and obstacle courses.” She still undergoes regular scans and treatment for epilepsy to limit her sudden and brief lapses of consciousness, called “absence seizures.”
Once a year, Veronica spends three days at Children’s National for intensive electroencephalography monitoring to
measure her brain wave patterns. “The nurses are always wonderful to me,” she says. “And I love it when the therapy dogs come for snuggles. I recently met Hampton, who was adorable.”
The team adjusted Veronica’s care routine as she grew from a child into a young woman with her eyes on the future. This has helped ensure that she doesn’t miss out on important milestones like getting her driver’s license. Along the way, Veronica says, her care providers have taught her a lot about empathy, patience and the power of kindness.
These qualities come in handy when she’s helping children find balance in the saddle. “Children’s National taught me how much progress a kid can make when they’re having fun. This inspired me to bring that positive energy into therapeutic riding for children who need it so much.”
Children’s National taught me how much progress a kid can make when they’re having fun. This inspired me to bring that positive energy into therapeutic riding for children who need it so much.”
― Veronica
Veronica at Great and Small therapeutic riding center; Inset: as an inpatient at Children’s National, with facility dog, Hampton
CREATE A LEGACY
Delivering Healthier Starts
Pregnant women and their babies are inextricably linked. However, conventional medicine often treats them separately. One clinical team cares for mothers, and another takes over after birth, primarily focusing on the baby’s health. For mothers with complicated pregnancies, this experience can form a disruptive and distressing gap in care.
The opportunity to bridge this canyon of care and improve lives from the earliest moment inspired longtime Children’s National supporters Judy and Leo Zickler. They made a transformational gift that will revolutionize care for women with high-risk pregnancies and their babies — particularly those in underresourced communities.
The Zicklers’ investment in our Prenatal Pediatrics Institute will provide seamless care to mothers and babies across their journeys and harness nextgeneration technology to ensure the best outcomes.
“This partnership gives us a great deal of comfort knowing that it will help children and families thrive for decades to come,” say the Zicklers. “We are proud to leave our family’s legacy at Children’s National.”
Stark Reality
Source: JAMA Psychiatry
Among new mothers, nearly 1 in 4 maternal deaths are attributed to mental health disorders.
An expectant mother receives an ultrasound examination
Realizing a Shared Vision
World-renowned experts Adré du Plessis, MBChB, and Catherine Limperopoulos, PhD, co-created the vision for the gift’s impact alongside the Zicklers. Dr. du Plessis, a prenatal-neonatal neurologist, directs the Zickler Family Prenatal Pediatrics Institute. He also is division chief of Prenatal and Transitional Pediatrics and director of the Prenatal-Neonatal Neuroscience Program.
Dr. Limperopoulos leads our Developing Brain Institute and Center for Prenatal, Neonatal & Maternal Health Research. She also is director of research for the Zickler Family Prenatal Pediatrics Institute. The two faculty leaders partnered with the Zicklers to blend the couple’s interests in health equity, nursing and research innovation with the Prenatal Pediatrics Institute’s most pressing priorities.
“Judy and Leo’s vision dovetailed beautifully with what we consider the next frontier of prenatal pediatrics,” says Dr. du Plessis. “We also shared a commitment to ensure these benefits reach underserved families, which is already at the heart of our work.”
A Critical Time for Intervention
Many chronic conditions originate in the womb. Diagnosing and treating potential problems before babies are born and during their earliest days sets them on a healthier path. In the first several months after birth, infant brains develop more quickly than at any other time after.
Prioritizing mothers’ physical and mental health also is key. Stress, depression and anxiety affect up to one-quarter of women during pregnancy. Stark inequities exist. Dr. Limperopoulos found that among expectant women of color with complex social and economic needs, nearly half experience these issues. Her pioneering research found that persistent psychological distress during pregnancy hinders babies’ brain development and can lead to later emotional and behavioral problems.
“Healthier futures for children begin with healthy mothers who receive trusted care during their pregnancies and beyond,” says Dr. Limperopoulos. “Thanks to the Zicklers’ incredible generosity, we can provide continuous care for mothers and babies across these crucial transitions.”
Prenatal pediatrics is the gateway to healthier families. The Zicklers’ investment will allow us to bolster resources for mothers, intervene during the most pivotal stage of development and forever change children’s health trajectories.”
― Dr. Adré du Plessis
Dr. Adré du Plessis reviews prenatal brain scans with an associate
Dr. Catherine Limperopoulos consults with an expectant mother
Deepening a Long-Standing Partnership
The Zicklers’ philanthropy at Children’s National stretches back three decades. Their prior gifts supported stem cell research and a fellowship in our Brain Tumor Institute. They also established a fellowship in Fetal, Neurologic and Critical Care Medicine that advances research to protect children’s hearts and minds before they are born.
“We have always been impressed with the vision and energy of the hospital’s leaders and experts,” they say. “The team is dedicated to finding solutions to the biggest challenges in pediatric healthcare and delivering compassionate care to every patient.”
The couple has witnessed this commitment firsthand. They have seven children, 16 grandchildren and 10 great-grandchildren. Several family members have received care at Children’s National. Their great-granddaughter, Arya, was born with congenital heart disease. Now 12, she underwent several surgeries as a baby and spent time in our Neonatal and Cardiac Intensive Care Units. Arya joined her family for a celebration event earlier this year to unveil the Zickler Family Prenatal Pediatrics Institute’s new signage.
“All mothers and babies deserve world-class care before and after birth,” adds the Zicklers. “We are thrilled to support this innovative work that will give more children the opportunity to lead happy, healthy lives.”
Creating a New Standard of Care
The investment funds three new initiatives. Initially, the focus will be on pregnancies complicated by critical birth defects, such as congenital heart disease (CHD), the most common birth defect in the U.S. Helping women address external stressors during pregnancy is critical for babies with CHD. This is because brain injury and lifelong neurodevelopmental delays are common complications.
Our partnership with Children’s National gives us a great deal of comfort knowing that it will help children and families thrive for decades to come.”
― Judy and Leo Zickler
Arya, as an infant, received cardiac surgery and care at Children’s National
1 Establish a Continuumof-Care Program for maternal mental health and mother-baby wellness. It will offer comprehensive care for moms with high-risk pregnancies and prioritize underserved families. Prenatal and developmental psychologists, a social worker, a lactation specialist and care coordinators will provide culturally sensitive and holistic healthcare.
2 Create a novel Continuumof-Care Nursing Program that incorporates nursing care before birth and follows a family through the months and years afterward. This will transform the field of nursing and care delivery by creating the first-ever subspecialty and training program focused on seamless care for mothers and their babies.
3 Harness technology and innovation to diagnose and treat problems sooner and prevent them from taking root. We will use cutting-edge devices and techniques, including advanced imaging and biomedical optics. Optics are noninvasive instruments that use light to provide information about how the brain and other organs are functioning. These tools will inform decisions about the safest timing for delivery and lifesaving procedures.
The Zickler family celebrates the new Institute in April; Arya is fourth from left
Dr. Limperopoulos delivers remarks honoring the philanthropy of Judy and Leo Zickler
Meet Our New Chief Data and Artificial Intelligence Officer
Artificial intelligence (AI) is revolutionizing healthcare and will shape the future of pediatrics. It can drive efficiency, supercharge research and improve patient outcomes. Harnessing AI safely and ethically takes thoughtful leadership. In June, Alda Mizaku, MS, became the hospital’s first chief data and AI officer. Previously, she led data engineering and analytics at Mercy Health in St. Louis for 11 years. We asked Mizaku about her work and vision for Children’s National.
WHAT EXCITES YOU ABOUT YOUR NEW ROLE?
I am passionate about the opportunity to leverage technology to create better experiences for children and families. Embracing innovation can help us create more health equity for our community. This
is an exciting time in healthcare. I’m committed to leading the way with compassionate and cutting-edge solutions. This includes realizing the full potential of medical data from electronic healthcare records and other sources. AI can help us develop treatment plans tailored specifically for each child. It also can make proactive recommendations to coordinate patient care.
WHAT HAVE YOU SEEN AI ACCOMPLISH IN MEDICINE AND HOW DO YOU ENVISION ITS GROWTH AND IMPACT IN PEDIATRICS?
AI yields helpful insights to understand each patient’s individual needs. It takes complex medical data and makes it more useful. It can help us diagnose disease and improve care coordination for each patient
family. AI fits very well into pediatrics because children’s hospitals put a lot of effort into research and development. For example, in rare disease, there’s an emphasis on building models to understand a condition’s genetic composition. AI gives us the opportunity to find solutions and intervene more quickly to change lives. This is the future of pediatric medicine.
Alda Mizaku presents at the Children’s National and Virginia Tech “Symposium on AI for Pediatric Health” in September 2024
HOW WILL CHILDREN’S NATIONAL USE AI TO IMPROVE PATIENT CARE?
We have been busy creating an enterprise cloud data platform. It will allow us to bring all of the hospital’s data into one place and create one true source of information.
This one-stop shop will make it much easier for our researchers and care providers to access the information they need to make
a difference for patients. AI will help with operational efficiencies. It will give us a clearer picture of which units across the institution are busy or have extra capacity. It can recommend ways to eliminate bottlenecks. This reduces wait times and allows us to help more patients.
HOW CAN AI HELP OUR FACULTY?
The beauty of AI is that it can help faculty focus more on patient care and less on their administrative tasks.
Jessica Herstek, MD, our chief medical informatics officer, is leading our pilot of an AI-based ambient listening technology that creates notes during patient encounters. The clinician focuses on their patient. Later, they can refine and approve the notes. Accountability remains important. Just because we’re leveraging technology, it doesn’t remove accountability for staff.
AI assists providers and reinforces their role in care. Medical innovations that leverage AI also can increase their efficiency.
For example, liquid biopsy technologies use AI to study blood samples and detect cancer. This helps patients avoid timeconsuming scans and painful traditional biopsies. We can detect disease or its recurrence much earlier in a less invasive way. This enhances care.
WHAT ARE SOME CHALLENGES WE FACE ON THE ROAD TO IMPLEMENTING AI?
Embracing AI systems may involve giving up some comfort in the way that we’ve always done things. It opens up possibilities,
but it requires some change. Our challenge is to make sure we have three things in place to create scalable, sustainable solutions. The first is having highquality, integrated data. The second is collaboration. The third is change management.
We will take an inclusive approach to implementing changes, working side by side with clinical and operational leaders. When we present solutions, it will be collaborative. Comprehensive training also plays a key role. We must address misconceptions about AI’s capabilities and foster a common understanding of its most effective uses.
Our recipe for success will be openness to contributing to better outcomes for our patients.
We need to collect highquality data consistently across different units. Variations don’t translate well to scalable solutions crucial to generative AI. When we look at the big picture, it’s clear we can come together to provide the best care.
WHY IS THIS WORK IMPORTANT TO YOU?
Technology and its capacity to transform lives has always captivated me. Growing up in Albania, my dad led the pharmacy at the local hospital. Sometimes I would ride in the ambulance when he needed to go to the hospital urgently. I was around 7 years old at the time, and it left a deep impression.
I recognized that each member of the team played a significant role in caring for the patient. This experience inspires my work to this day.
Book by Book
S iblings giggle over a “Dork Diaries” in the reading nook. A parent finds a moment to close their eyes in a comfortable chair. A nurse sings and reads to a patient from the Cardiac Intensive Care Unit. The Panda Cares Center of Hope, the Family Resource Center at Children’s National, provides comfort and a place to escape.
“It can be hard to be in the hospital,” says Allie Slocum, patient family library and resource coordinator and former patient at Children’s National. “With a book, a kid can end up at Hogwarts, at Camp Half-Blood with Percy Jackson or hanging out with ‘Pete the Cat.’”
Reading, she says, teaches empathy and about different ways of life. It also improves language development. These opportunities are one way we take care of the whole family.
Books have the power to nourish children and families and enrich the spirit.”
― Allie Slocum
Allie Slocum reads to a patient in our Neuroscience unit
The Family Resource Center is part of our Child Life and Integrative Services department. It opened in its current location, on the second floor of the hospital, in 2019. During the pandemic, programming shifted to virtual offerings. The space then reopened with tidy shelves lined with new literature in a variety of languages for patients and families to enjoy and take home. A robust programming schedule includes Dr. Bear’s Book Fair, a book delivery cart and themed story times, including “Story Tails” with the hospital’s pet therapy teams.
“Patients want to spend time here. They want to talk about what they’re reading and ask for recommendations,” says Slocum. She recalls a teen who won a basket of books during the hospital’s second book fair. “She told me she’d never won anything in her life. We poured over each book together, and she couldn’t believe they were hers to keep. No one in her life had ever recommended she visit a library or noticed that she had the spirit of a reader within her.”
Slocum says this special resource in the hospital raises children’s spirits and provides an opportunity to improve equity. She recently read “Angelina Ballerina” to a nonverbal patient bound to her bed. “Even though she couldn’t move, I could feel her elation,” Slocum says. This inspired Slocum to expand the bedside reading program to include patients with the same experience and circumstances. Storytelling, she believes, has a way of reaching everyone.
“Every kid deserves that calm, quiet connection that reading a book together brings. The Family Resource Center is a space for every kid. Every patient, every sibling is welcome. Everyone gets a book. And if you can’t get here, we’ll come to you. It’s all thanks to generous donors. We could not do this without philanthropy.”
A patient enjoys activity books from the library cart
Slocum travels the hospital with the library cart
Creating Connections
On a typical day in the Family Resource Center at Children’s National, Slocum might:
Talk to people about donating books
Organize and train volunteers
Develop a web-based reading program
L
Expand partnerships and programming with educational and literacy organizations such as PBS Kids and the Barbara Bush Foundation
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Help kids connect with their public libraries
Network with family resource centers in other pediatric hospitals
Brainstorm ideas related to a poetry and open mic night program for teenagers
Help start a book club in our Cardiac Intensive Care Unit
Collaborate with certified child life specialists to support individual patients’ mental health
The Family Resource Center is a space for every kid. Every patient, every sibling is welcome. Everyone gets a book. And if you can’t get here, we’ll come to you.”
― Allie Slocum
A patient enjoys story time in the Family Resource Center
Volunteer Leaders Improve the Patient Experience
Some experts in pediatric care do not wear white coats, stethoscopes or scrubs. They are former patients and their families who call Children’s National their second home.
Our Patient and Family Advisory Council, established in 2007, elevates the voices of those who have navigated complex health conditions to create positive systemic change at Children’s National. The council reports to the hospital’s Patient and Family Experience team. That team reports to Linda Talley, MS, RN, NE-BC, FAAN, senior vice president and chief nursing officer, and
presents annually to the Children’s National Board of Directors.
Darcel Jackson joined the council 12 years ago as a volunteer. She simultaneously began a professional role at the hospital as a parent navigator to support families with complex care needs. Years of specialty care, surgeries and emergency visits with her late daughter, Anniyah, inspired her. “I realized early on that I would advocate for her and other families like ours,” Jackson says.
Over the years, additional Patient and Family Advisory Councils have formed. One centers on the Neonatal Intensive
The councils engage us not just as volunteers but as hospital partners to make the experience better for everyone.”
― Darcel, Anniyah’s mom, parent navigator and council member
Care Unit. Another is the Youth Leadership Council. Jackson, now the manager of Patient and Family Centered Care, harnesses input from the councils and patient families to improve the care journey for all. “The councils engage us not just as volunteers but as hospital partners to make the experience better for everyone,” she says.
Jackson’s team places council members as key stakeholders on hospital projects, from redesigning the check-in process to the parking garage. Some joined the Vertical Transportation Committee to consult on installation of our new
Darcel Jackson with her late daughter Anniyah, who inspired her to join the Patient and Family Advisory Council
entrance. This resulted in higher ceiling heights for wheelchair-accessible vans and enhanced bathrooms on the ground level. “Every element aims to marry the needs of our staff and our families,” she says.
Council members meet with current patient families during doctors’ rounds. Austin Lee, a kindergarten teacher, was born with kidney disease and faced years of surgeries, two dialysis procedures and two kidney transplants at Children’s National. His mother donated her kidney for his first transplant. The second came through a paired living donor kidney exchange program. After receiving the second kidney, Lee promised himself he would do everything he could to give back to others in the community.
“I joined the council to share my story with other pediatric patients and put their perspective at the forefront,” Lee says. “I dreamt of the freedom I have now from my kidney transplants and want others with similar experiences to be able to do the same.”
Lee has volunteered hundreds of hours, visiting nephrology patients, sharing resources, setting up holiday decorations in the dialysis clinic and raising funds for gifts, among other activities. He also is a member of our Child Life Council and studying to become a child life specialist to bring comfort to patients like him. “Years after my transplants, I am blessed with having a family at Children’s National and am still embraced,” Lee says.
“My greatest hope is that every patient and family at Children’s National feels heard and embraced like I was,” says Jackson. “We want to honor their experience.”
Lee has volunteered hundreds of hours, visiting nephrology patients, sharing resources, setting up holiday decorations and raising funds for gifts.
Austin Lee with a nephrology patient in the Heart and Kidney Unit
Lee in our dialysis room; June 2025 will mark 15 years since his successful kidney transplant
GIVE
BACK YOUR OWN WAY
Lucie Bakes Unicorn Food
Lucie, age 8, loves gymnastics and swimming and earned her orange belt in Taekwondo. In 2023, she spent a week at Children’s National due to a rare condition that slows the flow of bile from the liver to the small intestines and can lead to a range of health issues.
“After spring break, Lucie kept getting sick,” says her mom, Jan. “She had a fever and terrible stomach pains. The ER discovered she had pancreatitis caused by a choledochal cyst.”
Lucie needed surgery. Jan contacted Timothy Kane, MD, Joseph E. Robert, Jr. Professor of General and Thoracic Surgery, a general and thoracic pediatric surgeon with expertise in treating this condition. “Lucie wanted a doctor who was not only experienced but kind,” says Jan. “We really appreciated how Dr. Kane spoke to Lucie directly,
Lucie's Unicorn Food Recipe:
1 cup oats
1 cup marshmallows
1/3 cup dried strawberries
1/2 cup chocolate chips
answered all her questions and listened to her opinions.”
A five-hour operation to remove Lucie’s gallbladder and bile duct and move up her small intestine led to complications that required a second surgery and blood transfusions. She was scared, and her parents were worried.
“I brought my stuffed animal, Barnard, with me to the hospital to make me feel better,” Lucie says. “The nurses gave both of us masks to wear and let me decorate them. When I had my transfusions, child life specialists brought in games and let me watch videos on the iPad.”
Jan says compassionate care eased their fears. “It was comforting having the nurses there to help us understand what was going on.”
After recovery, Lucie wanted to thank Children’s National. She joined a fair at a local firehouse where kids can make and sell a product to the community. Lucie decided to raise funds for the hospital with homemade granola, adding chocolate chips, dried strawberries and marshmallows. Her love of a special horned creature inspired her recipe’s name: unicorn food.
“Children’s National did such a good job taking care of me and even made me want to become a doctor one day,” Lucie says. “I hope the money can help bring the same comfort and joy to other kids in treatment.”
Lucie has one message for those patients: “Be strong.”
Lucie with her stuffed animal, Barnard, on the way to surgery; Above: Lucie sells her unicorn food
IN MEMORIAM
Shelby Tudor (1974–2024)
We remember a colleague who lived life with joy and a passion for our mission.
Shelby Tudor was known as the glue and glitter of Children’s National Hospital Foundation. Our highly respected director of Gift Administration was beloved for her warm, vibrant spirit. She made everyone feel special. Shelby delivered her expertise with a side of levity. She tackled every challenge with a sincere, “How can I help?” while wearing her favorite Converse sneakers.
Shelby loved hearing from donors and patient families and delighted in sharing with colleagues the inspirational notes,
photos and patient artwork that often arrived with philanthropic donations. She tacked those mementos to her office walls.
“Her kindness and joy were infectious. Her passion for our mission was unmatched,” says DeAnn Marshall, MHA, president of Children’s National Hospital Foundation. “Her sense of humor was a delight.”
Shelby passed away unexpectedly in May after complications from a routine surgery. During her six years at Children’s National, Shelby
brought cheer as a volunteer at many hospital fundraising events, including the Children’s Ball. Coworkers recall her donning a tutu to inspire support for the Race for Every Child. This year, the “Foundation Strong for Shelby” team raced in her honor.
Shelby loved travel, animals, the color orange, the beach and 1990s dance songs. She cherished her family and husband, Ed, whose career took them all over the country in their earlier days.
We miss Shelby greatly.
Artwork by Children’s National patient Sofia
Her kindness and joy were infectious. Her passion for our mission was unmatched. Her sense of humor was a delight.”
― DeAnn Marshall
Endowed Professorships Advance Discovery
Professorships represent the highest honor in academic medicine. At Children’s National, they allow outstanding physician scientists to advance groundbreaking work for kids and their families.
In 2024, we announced the following professorships. Each named role reflects a donor’s generosity and vision to improve care now and for future generations of children.
Kevin Cleary, PhD
Sheikh Zayed Professor of Bioengineering
Dr. Cleary leads a team of engineers and inventors who dream of new ways to make care more precise and less invasive. He guides the Bioengineering Initiative at the Sheikh Zayed Institute for Pediatric Surgical Innovation. He collaborates across the hospital to develop medical devices and other tools that help kids heal. These include PedBotHome, a video gamebased device to improve ankle movement in patients with cerebral palsy through rehabilitation exercises at home.
Adré du Plessis, MBChB
The People of the United Arab Emirates Distinguished Professor of Prenatal Pediatrics
Dr. du Plessis, a renowned child neurologist, leads one of the world’s foremost efforts to improve care for mothers and babies. He uses novel imaging technologies to shed light on the brain’s development before and after birth. This work is a key focus of our Zickler Family Prenatal Pediatrics Institute, which he directs. Read more on page 26.
Timothy Kane, MD
Joseph E. Robert, Jr., Professor of General and Thoracic Surgery
Dr. Kane, chief of General and Thoracic Surgery, leads the Minimally Invasive Therapy Program at the Sheikh Zayed Institute. He works to improve pediatric surgery through clinical practice, instruction and research. Under his direction, Children’s National has used a novel technique, peroral endoscopic myotomy for achalasia, a rare swallowing disorder.
AeRang Kim, MD, PhD
The Lexi Speight Chair of Pediatric Oncology
Dr. Kim, oncology clinical research director, is a driving force behind groundbreaking clinical trials for children’s solid tumors. Since 2010, her work has been vital to Children’s National cancer care and innovation. Dr. Kim designs research to test promising new solid tumor drugs and devices. Her goal is to find better treatments, cure childhood cancers and reduce long-term side effects.
Matthew Evan Oetgen, MD
Joseph E. Robert, Jr., Professor of Orthopaedic Surgery and Sports Medicine
Dr. Oetgen, chief of Orthopaedic Surgery and Sports Medicine, is a trailblazer in the field. Under his leadership, we opened the Fight For Children Sports Medicine Center to help young athletes perform at their peak. His team also launched the nation’s first pediatric Spinal Fusion Surgical Home. This program has decreased pain scores among patients with scoliosis and led to shorter hospital stays.
An Award for Exemplary Nursing
The Children’s National Nurse Navigator team is a beacon of support for patients and their families. In 2024, the team received the DAISY Award for Extraordinary Nurses in Patient Safety from the Institute for Healthcare Improvement and DAISY Foundation. It recognizes commitment to patients and workforce safety in the delivery of compassionate care.
“Nurse navigators are the connection to whatever help a family needs,” says ShellyAnn Hope Bryan, MSN, RN, manager of the program. “Nurses will always go above and beyond.”
Our nurse navigators serve as a single point of contact for families. Team members dedicate themselves to understanding a child’s unique needs and easing a family’s stress. They explain medical information and bridge care and communication gaps to help ensure a positive experience. In the last year, our five nurse navigators worked with more than 700 patients and their families.
Corporate Appreciation
From community programs to AI-driven healthcare solutions, our corporate partners power work that changes lives. We celebrated their contributions at our Corporate Appreciation Reception on Sept. 25. This generous support helps us improve the health and well-being of the more than 250,000 patients who receive care at Children’s National each year.
One of those patients is Kasey, receiving treatment for brain cancer since 2021. Her dad, Joe Zachmann, shared how her journey inspired his advocacy for pediatric brain cancer research. His family supports Children National through the Race for Every Child. Zachmann is senior director of International Human Resources at Marriott Headquarters.
Nurse navigators are the connection to whatever help a family needs.”
―
ShellyAnn Hope Bryan, MSN, RN
The Nurse Navigator team receives the DAISY Award for Extraordinary Nurses in Patient Safety
From left: Vice President of Community Engagement, Advocacy & Government Affairs Tonya Vidal Kinlow, MPA, with Rowland Illing, MD, of Amazon Web Services; Jessica Streiter Elting of Aflac; and Joe Zachmann
Race for Every Child
Our 12th annual Race for Every Child 5K Run/Walk united our community on Oct. 19 to raise more than $1.85 million to elevate pediatric care. At Freedom Plaza in Washington, D.C., and virtually, 8217 participants took part in the 5K and Kids Dash.
This year, 19-year-old Jackson, a patient, crossed the finish line in honor of the doctors who helped him recover from a rare autoimmune disease. Ten years ago, he lost the ability to walk, talk and eat on his own. “I am so thankful for everyone at Children’s National, especially the Neurology team, who made it possible for me to live the life I have today,” Jackson says.
Special thanks to Race Co-Chairs Eric Rosenkranz, Taryn Rosenkranz and Karen Stauffer, our Race Committee and generous sponsors for making this event possible.
Scan to watch highlights from the Race for Every Child
Heartbeats of Hope
Smiles. Stories of care that brought tears. Handmade gifts from adoring patients. In September, grateful Children’s National heart families gathered with hospital leaders, faculty and staff to raise money to help launch the Children’s National Heart Research Institute.
Each of the Dunn, Glading, Klug, Pastrick and Thompson families has a personal story about the impact of pediatric cardiac care at Children’s National. So far, their efforts have raised more than $8.1 million. This philanthropic support will enable our world-class experts to revolutionize care and develop lifesaving treatments for children with heart conditions, delivering healthier, brighter futures.
Patient Brady gives handmade ceramic hearts to Dr. Charles Berul and the cardiac care team. Behind from left: Meghan Rowan, BSN, RN, CCRN, Dr. Mary Donofrio and Yves d’Udekem, MD, PhD
Race for Every Child; Inset: Opera Italiana is in the Air performs for visitors and patient families in the Costco Atrium
Opera in the Atrium
Three award-winning vocalists and a pianist filled the hospital’s Costco Wholesale Atrium with songs from La Traviata, Tosca and other classics, courtesy of Opera Italiana is in the Air. The performance also live-streamed to patient rooms.
“This was the respite that we needed even for just a moment,” said the mother of an 8-year-old patient.
Opera Italiana introduces the music’s beauty and emotion to diverse audiences through free, informal concerts in Italy and around the world. Maestro and founder Alvise Casellati likes to promote opera’s therapeutic properties. “Music can be a tool to help children feel better,” he says. “Opera speaks to the soul. In its purest form, it is sheer entertainment for everyone. I am thrilled with our collaboration with music therapy departments and Children’s National.”
Performance Coordinator Dana Morgan, in Creative and Therapeutic Arts Services, organized the event, one of a series of performances highlighting the healing power of art.
Holidays at the Hospital
Ballet dancers leap, snowmen twinkle and superheroes spread joy in our Bunny Mellon Healing Garden during our annual Winter Walk of Lights. This festivecelebration is one of many ways our staff makes the season magical for families who must spend holidays in the hospital.
Our Spiritual Care Center hosts candle (menorah) lightings during Chanukah, the Jewish festival of lights, and hosted a Native American event to welcome the winter solstice.
Other favorite hospital events have included a vibrant and diverse lineup of musical performances to celebrate Kwanzaa, Junkanoo and Las Posadas.
Dr. Bear’s Toy Shop, filled with donated gifts, makes it easier for families to deliver the holiday spirit to their children in the hospital. “It’s a place of laughter but also tears,” says Tawni Rochester, CCLS, manager of Child Life Services. “Giving families the opportunity to ‘shop’ often makes them very emotional and incredibly grateful. It’s an honor to be a part of it.”
Patient families enjoy the installation in our Bunny Mellon Healing Garden; Above: ballet dancers share a moment at the Winter Walk of Lights; Inset: Chanukah menorah lighting
A Patient’s Perspective
Emelia, age 8, has been a patient at Children’s National for as long as she can remember. She was born with a congenital cataract, which means one of her eyes had a clouded lens. Her first eye repair, cataract surgery, was at 6 months. A recent third operation helped straighten her eye. “Everyone at Children’s National has been so nice and caring,” says Emelia’s mom, Helen. “They are helping her have better eyesight, which will be important for the rest of her life.” Emelia’s favorite stuffed animal, Patty Cake, also gets special care during checkups with William Madigan, MD, a pediatric ophthalmologist, and his team.
How would you describe your experience at Children’s National?
The people there are helping my eye get stronger. They check my eye pressure and test how far I can see. Thanks to them, I can see my dolls better. I can see my grandma. I can see what’s around me better and feel more comfortable.
What’s your favorite place at the hospital?
The shop in the hospital atrium. I like going there. My mom doesn’t always buy me something, but I like to look at the dolls and toys. Once someone got me a gift from there, a blanket with dogs on it, while I was in the hospital. It’s one of my favorite things.
Tell us about a time someone took special care of you.
Dr. Madigan always talks to me and asks how I’m doing. The nurses are also always helpful. They check my eyes and also Patty Cake’s. Sometimes they give her an eye patch too. They ask how she’s doing and how far she can see. I like that. Sometimes it’s easier to talk about Patty Cake than myself. I also like it when they give me a lollipop when I leave.
What do you do for fun?
I love playing with dolls with my grandma. I also love singing. It helps distract me when I have to wear my patch — six hours each day. Patch time helps my other eye get stronger. But I can’t see very well with it on. And I get cranky — very cranky. Singing makes me feel better. So do the people at Children’s National.
Children’s National Hospital
Executive Leadership
Michelle Riley-Brown, MHA, FACHE
President, Chief Executive Officer
Donna Anthony, MPH
Vice President, Chief of Staff
Nathaniel Beers, MD, MPA, FAAP
Executive Vice President, Community and Population Health
Catherine Bollard, MD, MBChB
Interim Senior Vice President, Chief Research Officer
Denice Cora-Bramble, MD, MBA Chief Diversity Officer
Gina M. Cronin, MHA, FACHE
Senior Vice President, Chief People Officer
Jeffrey Dome, MD, PhD
Senior Vice President, Cancer and Blood Disorders Center
Interim Senior Vice President, Hospital Based Specialties
Wayne J. Franklin, MD, FACC
Senior Vice President, Children’s National Heart Center
Mary Anne Hilliard, Esq., RN, FAAN
Executive Vice President, Chief Legal Officer
Nathan Kuppermann, MD, MPH
Chief Academic Officer, Chair of Pediatrics
Aldwin Lindsay, MBA
Executive Vice President, Chief Financial Officer
Matt MacVey, MBA
Executive Vice President, Chief Information Officer
DeAnn Aston Marshall, MHA
President, Children’s National Hospital Foundation
Jessica Menter, MPP
Executive Director, Corporate Governance and Strategic Engagement
Anthony Sandler, MD
Senior Vice President & Surgeon-in-Chief
Joseph E. Robert, Jr., Center for Surgical Care
Director, Sheikh Zayed Institute for Pediatric Surgical Innovation
Linda Talley, MS, RN, NE-BC, FAAN
Senior Vice President, Chief Nursing Officer
Elizabeth Wells, MD, MHS
Senior Vice President, Center for Neuroscience and Behavioral Medicine, Neurologist
David Wessel, MD
Executive Vice President, Chief Medical Officer
Physician-in-Chief
Children’s National Hospital Foundation Executive Leadership
DeAnn Aston Marshall, MHA President
Julie Butler
Vice President
Shelley Cooke
Associate Vice President, Major, Principal and Planned Gifts
Kerri Yoder Hubbard
Associate Vice President, Major, Principal and Research Gifts
John Loughner Vice President, Systems and Data Integrity
Melanie McCarty
Associate Vice President, Special Events and Stewardship
Tin Pham
Associate Vice President, Finance and Donor Services
Mandy Ranalli
Associate Vice President, Major, Principal and International Gifts
Leslie Schrader Vice President, Chief Marketing and Communications Officer
Elizabeth Treble
Associate Vice President, Corporate and Annual Giving
Children’s National Board of Directors
Horacio Rozanski Chair
Barbara Lopez Kunz Vice Chair
Ramu Potarazu Treasurer
Amy Baier
Jonca Bull, MD
Toni Bush
Amy Freeman
Michael Jones
Jason Levien
Carrie Marriott
Linda Rabbitt
Jimmy Reyes
Mark Rouchard
David Strickland
Caroline Van Vleck, MD Michael Ward Directors
Michelle Riley-Brown, MHA, FACHE President, Chief Executive Officer
Children’s National Hospital Foundation Board of Directors
Kathie Williams Chair
Fernando Goldsztein, MBA
Paul Grayson
Thomas Lloyd
Timothy Lowery
Mei Xu Directors
Michelle Riley-Brown, MHA, FACHE President, Chief Executive Officer
Horacio Rozanski
Children’s National Board Chair
