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Making SMA History
families, and philanthropists transform an incurable disease.
Caring for Vulnerable Families
Supportive interventions ensure all kids can flourish.
Growing
Leaders, Today
The experts of the future are building careers at Boston Children’s.
4 Nicole Stata 26 Dr. Mary Margaret Gleason
•
Big
Questions
14 How can families better manage diabetes? 30 How can parents promote safe and smart screen use?
• New Funding
Halting pediatric cancer
Better diagnostics for visual impairment
“Every day is a new opportunity to shape healthier tomorrows.”
BOSTON CHILDREN’S IS A community like no other. We are defined by our unstoppable pursuit of life-changing science, our wholehearted commitment to children and families everywhere, and our sincere appreciation for the philanthropists who fuel this vital work.
In this issue, we’re delighted to take you inside a few places in our community: Boston Children’s at Martha Eliot in Jamaica Plain, Children’s Hospital Primary Care Center on our main campus, and our Department of Dentistry at Two Brookline Place.
You’ll meet some special patients and see how Boston Children’s blends cutting-edge medicine with compassionate care to change lives. You’ll read about early-career scientists and get a preview of tomorrow’s lifesaving treatments. You’ll learn about our new Trust Board chair and the daughter who inspired her commitment.
We’re grateful that each and every one of them is part of our community. We’re thankful that you are, too.
Today, communities everywhere fear for the future. While talk of challenges and crises dominate the headlines, I’m focused on opportunity. Every day is a new opportunity to shape healthier tomorrows, to ensure children everywhere can grow up healthy and strong. And I’m confident that our Boston Children’s community will deliver.
As always, thank you for your generosity, your insights, and your passionate interest in our work.
Warmest Regards,
KEVIN B. CHURCHWELL, MD CEO
Spotlight on Care
CHANGING THE FACE OF DENTISTRY
COMPASSIONATE EXPERTISE ENSURES SMILES FOR ALL.
WHEN KATIRIA AND JOSE first brought their son Jeremy, who has autism, to Boston Children’s for dental care, the 6-year-old sat by the door. Jeremy was terrified, and Dentist-in-Chief Man Wai Ng, MD, DDS, MPH, could only get a quick look at his teeth.
Today, Dr. Ng provides a full cleaning, pulls two teeth, and consults with a colleague about braces, all while Jeremy, now 12, sits quietly in the dental chair.
“It’s like magic,” says Jose. “Dr. Ng understands our son, and that makes all the difference.”
Reducing Stress, Building Trust
Our Department of Dentistry has long been a champion for patients like Jeremy, who have special needs that can make dental care challenging. The team offers preventative care, chronic disease management, and treatments for cleft lip, tooth infection, and dental trauma. They partner with specialists to treat children with serious medically complex con-
ditions, including heart disease, bleeding disorders, and cancer.
“So much of what we do can’t be done anywhere else,” says Dr Ng. “We see patients from all over, but our mission is always the same—to set them up for a lifetime of optimal oral health.”
When Niko, 4, was nervous about his visit, Kaitlin Slepian, MS, a certified child life specialist, called his mom Licinia ahead of the appointment to learn more. Because Niko had struggled at their local dentist, Licinia came to Boston Children’s in search of a clinic that could better meet her son’s needs. Slepian has a toolbox of interventions—picture books detailing each step of an appointment, checklists to help kids visualize what comes next, and medical play to familiarize patients with dental equipment.
“Dentistry is a space where kids often feel vulnerable,” says Slepian. “My goal is to identify coping strategies to increase their comfort during their visit.”
Before the dentist arrives, Slepian stops by Niko’s room so he can
interact with her toy dental kit. The play helps him gain a sense of control and begin to relax.
Open Doors for Everyone
This compassionate approach extends to all patients, no matter their need. The safety net practice won’t turn anyone away—even on a Sunday.
Mikey, 18, arrived after his two front teeth were knocked loose during basketball practice. After hours at a local emergency room, the doctor recommended Boston Children’s.
“As soon as we got here, I felt relieved because I knew we’d get the best care,” says Mikey’s mom Andrea.
Mikey has needed two root canals, a splint to hold his teeth in place, and regular follow-up visits. As nerve-wracking as the process has been, Andrea knows they came to the right place.
“He has his whole life ahead of him,” says Andrea. “We’re so grateful Boston Children’s is here to protect his teeth and keep him smiling.”
RIGHT: MEDICAL PLAY HELPS NIKO FEEL AT EASE BEFORE HIS APPOINTMENT.
DENTISTRY AT A GLANCE
3 33,000+ patient visits annually
3 70% of patients have Medicaid or no insurance coverage
3 ~ 60% have special needs, including autism spectrum disorder, Down syndrome, cerebral palsy, heart disease, bleeding disorders, and cancer
3 10 trainees participate in our advanced education program
3 25 dentists and 10 hygienists, including the following specialists:
17 pediatric dentists
4 orthodontists (braces)
1 prosthodontist (crowns, bridges)
1 periodontist (gums)
1 endodontist (root canals)
NICOLE AND MAI
Nicole Stata: Leadership for the Long Run
“I RUN MARATHONS because it’s hard. When I start to fall apart, I think about the kids who have to fight to get well, while all I have to do is hobble up a hill.”
That’s what Nicole Stata says about Boston Children’s Miles for Miracles program. Stata recently embraced another major challenge, stepping in as Trust Board chair during a tumultuous moment for science and medicine. A leading investor in early-stage innovation, she’s no stranger to complexity. What drives her, in work and philanthropy, is a deep curiosity and a belief in building for the future alongside great people. She keeps her sights on the finish line—giving back to the community.
“The event that drew me to Boston Children’s,” Nicole says, “was the fact that they saved our daughter’s life.” When Nicole and her husband, Joe, welcomed twins Mai and Kai to the world, all seemed well. But soon Mai was diagnosed with a congenital heart defect and needed open-heart surgery at 2 months of age. “Everyone we spoke to around the globe said, ‘Do it at Boston Children’s.’” The surgery was a success, and it left a lasting impression—inspiring the family to give back.
Their impact has been profound, from Nicole’s first steps fundraising for the 2009 Boston Marathon through the family’s transformational support of essential clinical building projects, including naming the Maria Stata Cardiology Outpatient Services in honor of Nicole’s mother and daughter. In addition to her philanthropy, Nicole has dedicated over 16 years of her time serving on committees
and boards. Her commitment is shared by Mai, who is an active member of the Teen Advisory Committee, which empowers patients through advocacy, program recommendations, leadership opportunities, and communication with hospital staff and administration. “It’s important having our children watch good people step into an opportunity where they can help, so that when it comes time for them to do the same, they do it.”
Boston Children’s represents a rare convergence of heart, purpose, and professional alignment for Nicole. “From watching my parents, I’m mission driven to innovate, invent, improve, and give back.”
As general partner and co-founder of Boston Seed Capital, Nicole sees deep parallels between entrepreneurs identifying problem-solving opportunities and scientists pioneering cutting-edge treatments. Both need seed funding to advance an idea that can change the world. “Follow the people,” she says. It’s more than a mantra; it’s a guiding philosophy in both investing and philanthropy.
As Trust Board chair, Nicole brings her talent for spotting exceptional individuals and uniting them around a shared purpose: helping kids get well. She sees her role as building on the legacy of those who came before her and championing innovation in areas where it’s urgently needed— like pediatric mental health. She’s here to carry the mission forward with curiosity, clarity of purpose, and the long-distance mindset of someone who knows that the hardest paths are often the most meaningful.
LEADERSHIP BY THE NUMBERS
3 8 marathons as a Miles for Miracles runner
3 5+ years on the Heart Center Oversight Committee
3 8 years on the Philanthropic Board of Advisors
3 6 years (and counting) on the Trust Board
FROM WATCHING MY PARENTS, I’M MISSION DRIVEN TO INNOVATE, INVENT, IMPROVE, AND GIVE BACK.
Cures
Making SMA History Spotlight on
SCIENTISTS FIRST DESCRIBED SPINAL MUSCULAR ATROPHY (SMA) IN THE LATE 19TH CENTURY. IT WAS THE MOST COMMON GENETIC CAUSE OF DEATH FOR CHILDREN UNDER 2, AND IT WAS INCURABLE. NOW, PHYSICIANS ARE HALTING DISEASE PROGRESSION AND, WHEN DETECTED EARLY ENOUGH, PREVENTING THE DEADLY NEUROMUSCULAR DISORDER FROM TAKING HOLD.
1 PHILANTHROPIC PARTNERSHIP
1 PATIENT IMPACT
1 SCIENTIFIC BREAKTHROUGH
1 LEADERSHIP
Researchers identify SMN1 and its modifier gene, SMN2, as the culprits in SMA, opening the door to genetic diagnosis and further research into the molecular mechanisms of the disease. 1995
Basil Darras, MD, joins Boston Children’s. His vision: turbocharge research and leverage new discoveries for better care.
Dr. Darras and his team at Boston Children’s, together with Columbia University Medical Center, Children’s Hospital of Philadelphia, and the University of Rochester Medical Center, establish the Pediatric Neuromuscular Clinical Research Network (PNCRN). Supported by a small but dedicated group of donors, the PNCRN begins laying the groundwork for future drug development.
Dr. Darras launches the Boston Children’s Spinal Muscular Atrophy Clinic, assembling a multidisciplinary team to address the complex needs of patients.
Gordon and Jane Slaney, whose son Scott was diagnosed with SMA in the 1970s, add their support to Dr. Darras’ research and the Spinal Muscular Atrophy Clinic. “You can’t lay back and hope that something happens,” says Gordon. “You have to get involved and see what you can do.” Over the next several years, more patient families—individually and through nonprofits such as the SMA Foundation—join Boston Children’s efforts. 2007
Clinical trial of Spinraza, the first drug specifically designed to treat SMA, begins at Boston Children’s and other centers.
Wendy Chung, MD, PhD, leads research demonstrating the benefit of newborn screening for SMA and recommends its addition in the uniform screening panel.
Cure SMA and Working on Walking (WoW) make the first of many grants to Boston Children’s to advance research and clinical care. “Boston Children’s has paved the way to new SMA treatments, and it’s an honor to play a small role in it,” says WoW founder Alyssa Silva.
The U.S. Food and Drug Administration (FDA) approves Spinraza to treat SMA. Parents seeking treatment for their children flood Boston Children’s with phone calls within minutes of the announcement.
The FDA approves Zolgensma, a one-time gene therapy for SMA.
Newborn screening for SMA begins in Massachusetts, setting the stage for universal screening in all 50 states. Early diagnosis is especially important in motor neuron disease because, by the time symptoms appear, a child has already lost at least half their motor neurons. “If you start treatment before symptoms appear,” says Dr. Darras, “you can prevent SMA.”
Evrysdi, an oral medication, is approved for children older than 2 months.
Clinical trial of Apitegromab, an add-on muscletargeting therapy for later-onset SMA begins at Boston Children’s and other sites. FDA approves Evrysdi for all ages.
Kids like Adrian look ahead to a brighter future. “SMA represents an inflection point in pediatric neurology,” says Neurologist-in-Chief Mustafa Sahin, MD, PhD. “A terminal illness has become a chronic illness.”
Boston Children’s pursues answers for other conditions, including Rett syndrome, Angelman syndrome, fragile X syndrome, and many more rare genetic disorders.
CARING FOR VULNERABLE FAMILIES
CHILDREN FLOURISH WHEN FAMILIES RECEIVE THE CARE THEY NEED TO LIVE HEALTHIER LIVES.
IN THE 1870S, milk was killing Boston’s children.
Doctors at the newly established Boston Children’s Hospital witnessed the suffering caused by milk-borne diseases and knew they had to act. By the early 1900s, the hospital was maintaining its own herd of cows to ensure that children in the community had a safe supply of milk.
Now, the threats against the most vulnerable children are more nefarious than contaminated milk. Thrust into the chaos of food insecurity, housing instability, discrimination, and other daunting social hardships, families face diagnoses like obesity, asthma, and developmental disabilities.
But early interventions, in the clinic and in the community, can transform adversity into opportunity. Vice President of Community Health and Engagement Shari Nethersole, MD, says, “What happens in childhood determines future health. When you help communities get what they need to support healthier habits and lives, families and children can thrive.”
Food Insecurity and Obesity
In some ways, Boston Children’s at Martha Eliot (MEHC) Nurturing Wellness Program is reminiscent of the hospital dairy herd: The nutrient-poor food available to families in under-resourced neighborhoods is making children sick. MEHC caregivers are presenting solutions.
Located in the Jamaica Plain neighborhood, MEHC offers primary and preventive care along with behavioral health and other specialized services—including, since 2023, Nurturing Wellness.
Patients 6 and up who have an elevated body mass index and an obesity-related comorbidity, such as type 2 diabetes or high cholesterol, are eligible for the program. Children and their families spend a year learning the principles of healthy nutrition, like how to read food labels and choose healthier snacks, and explore ways to improve sleep, physical activity, and mental health.
“Exercise is central to the program. We encourage families to find activities that work for them,” says Jason Zhang, MD, PhD, founder of Nurturing Wellness. The team recommends everything from dance videos to walking the dog and discounted gym memberships.
RIGHT: COMMUNITY HEALTH PARTNERSHIPS ADDRESS THE NEEDS OF FAMILIES IN BOSTON AND SURROUNDING TOWNS. THE FAMILY FOOD CONNECTIONS PROGRAM DISTRIBUTED NEARLY 1.7 MILLION POUNDS OF FREE, NUTRITIOUS FOOD LAST YEAR.
“We believe children everywhere deserve the best, and we’re starting with our own little corner of Boston.”
Zhang notes that MEHC also has two pediatricians trained in prescribing state-of-the-art GLP1 obesity medications as an adjunct to lifestyle changes—a rarity for a community health clinic.
“The overarching theme of Nurturing Wellness is to curb obesity by bringing expert care to the community. We believe children everywhere deserve the best, and we’re starting with our own little corner of Boston.”
Allison Wu, MD, MPH, is tackling food insecurity and obesity from another angle: clinical research that focuses on food as medicine and improving access to nutritious foods. Over six weeks, families participating in a recent study received two meal kits per week containing fresh ingredients and simple recipes available in English and Spanish.
“Caregivers appreciated the hands-on learning that came with the program. They found it easy to prepare the meals and their kids were more inclined to try new food after they helped prepare it,” says Dr. Wu.
In collaboration with MEHC social workers, Dr. Wu and her team are using feedback from study participants to develop other ways to provide sustained nutrition support for families with food insecurity.
“Nutrition impacts a child’s biological health, emotional well-being, and academic performance,” says Dr. Wu. “My goal is to help children reach their full potential through nutrition and to continue this work at Martha Eliot, where the needs are high.”
Asthma and Autism
At Children’s Hospital Primary Care Center (CHPCC), providers and researchers also are addressing the overall well-being of patients, including the links between physical health, learning, and mental wellness. Among its areas of focus are asthma and developmental disabilities.
Around 15% of CHPCC patients—about 2,200 children—have an asthma diagnosis. Robbing patients of their breath, asthma attacks are dangerous and disruptive. Children, frequently hospitalized, fall behind in school. Their parents face job
loss from missing days of work.
The Primary Care Asthma Program was established almost 20 years ago to help families monitor and control asthma symptoms and stop attacks before they start. The program educates families and providers on best asthma practices. Program leaders advise school nurses and community clinics on the most cutting-edge care while also working with the City of Boston to identify and remediate triggers in families’ homes. Thanks to the program, patient families are experiencing fewer asthma-related hospitalizations, emergency room visits, missed school days for children, and lost workdays for parents.
The program also provides personalized advocacy. “A young patient of mine relied on his pet goldfish to help him sit through long nebulizer treatments,” says Linda Haynes, MS, a co-leader of the program. “Then his family needed to move, and the new landlord prohibited pets of any kind.” Haynes contacted the landlord and secured an exception, ensuring both housing stability and continued good health.
This compassionate care is mirrored in CHPCC’s patient-centered approach to clinical research.
COMPREHENSIVE CARE FOR YOUNG PARENTS
While rates of teen pregnancy have been decreasing, the challenges faced by young parents are as formidable as ever: Their education often is interrupted; money is tight and housing unstable. The Young Parents Program at CHPCC is designed to meet the complex needs of these parents and their babies.
Open to parents who are 19 or younger when they deliver their first child, the program ensures parents are cared for physically, mentally, and socially, while babies receive expert medical attention during the pivotal early years of development. This comprehensive approach gives mothers, fathers, and their children a strong foundation for a healthy future.
The beauty of the program, says Kathleen Conroy, MD, comes from witnessing remarkable positive changes in her patients. “There’s a young woman who’s now a social worker for the Department of Children and Families. She built on her experience as a teen mom to continue her education and go on to help other people like her.”
In 2011, a groundbreaking Boston Children’s study demonstrated that abnormalities in electroencephalography (EEG) signals can serve as a biomarker for developmental disabilities, including autism spectrum disorder (ASD). Now, CHPCC pediatricians are leading a similar study, called Baby Steps.
Launched in 2022, Baby Steps has recruited 500 participants receiving care at CHPCC. Babies’ brain activity is recorded in the clinic at four different well-child visits. At 24 months, the investigators provide families with a thorough evaluation that can be shared with their pediatrician. To date, more than 100 children have reached the 24-month evaluation, and preliminary findings suggest unexpectedly high rates of ASD and developmental delays in this population.
“By doing this study during scheduled visits,
we’re enrolling participants who are underrepresented in research, like families who live in shelters and working parents with competing responsibilities,” says Carol Wilkinson, MD, PhD. “Importantly, when we identify a toddler with delays or autism, we work quickly with the CHPCC to help families access early intervention services.”
Another well-child program is Reach Out and Read, a national initiative that promotes literacy and parent-child bonding by giving children a free book at their first five visits.
In the 2020s, these evaluations and interventions can have the same impact that healthy milk did in the late 1800s: They give children the chance to flourish. This is the powerful goal of every community health initiative at Boston Children’s and the opportunity every child deserves, no matter their circumstances.
NATHAN, A BOSTON CHILDREN’S PATIENT
Big Questions
HOW CAN FAMILIES BETTER MANAGE DIABETES?
EVERY DAY, health problems caused by type 1 diabetes (T1D)—one of the most common and serious chronic diseases of childhood—are made worse by a second common and chronic problem: no access to data.
T1D requires unending attention to glucose monitoring, carbohydrate counting, insulin administration, and exercise to maintain stable blood glucose levels and prevent serious health complications, including vascular damage and heart disease. These tasks place heavy demands on families. New technologies, such as continuous glucose monitors, insulin calculator apps, and insulin pumps, can help simplify and improve diabetes management. However, many families, lacking sufficient language skills or finances, have trouble accessing these tools. The same holds true for many young adults who were diagnosed with T1D in childhood and are now living on their own. “We need to educate patients about their condition, the technologies available, and the need to prioritize their diabetes management,” says Gretchen Waldman, MSN, RN.
The Lillylulu Foundation wants to help. Co-founded by John Lashar after his daughter Lilly was diagnosed with T1D, Lillylulu raises funds and awareness to find a cure and address health care inequalities in T1D care.
In 2024, Lillylulu made a generous gift supporting a diabetes resource nurse who offers technology assistance to families in the Boston Children’s Diabetes Program. In his first year, Geoffrey Rowe, RN, reached out to families nearly 1,900 times to help them access and use technology. Rowe boosted their comfort with innovations, such as a cloud-based app that allows patients and care teams to monitor real-time glucose levels and insulin dosing, enabling adjustments as needed.
This year, Lillylulu established the T1D Clinical Innovation Program Fund under the direction of Katharine Garvey, MD, MPH, and Waldman to help strengthen outreach and care for children with T1D. This outreach team includes a second resource nurse and a nurse educator tasked with shepherding information among the patient, resource nurses, social workers, nutritionists, and endocrinologists. The expanded team provides an extra layer of clinical support, particularly for high-risk patients and families. Among the 2,500 patients in the Diabetes Program, over 300 have significantly elevated hemoglobin A1C levels, placing them at greater risk for serious short- and long-term complications.
“We want families to know they’re not alone. We’re here to support them in finding the management approach that works best for their lifestyle,” says Waldman.
OPPOSITE (L-R): PERRY BEAL (LILLYLULU FOUNDATION BOARD MEMBER), DR. KATHARINE GARVEY, GRETCHEN WALDMAN, LILLY LASHAR, GEOFFREY ROWE, JOHN LASHAR, DEBI LASHAR, SEAN DOHERTY (LILLYLULU FOUNDATION BOARD MEMBER), SUZY DOHERTY
Jonathan Kozowyk
Voices
HOW DO ZEBRAFISH AND BEARS IMPROVE CARE FOR KIDS WITH EPILEPSY?
THE RESEARCHER:
Ann Poduri, MD, MPH
Dr. Ann Poduri studies the developing brain—how it forms, what goes wrong in epilepsy, and how science might one day allow us to correct those changes. A leader in epilepsy genetics, Dr. Poduri is also a big believer in zebrafish: tiny creatures whose brains are more like ours than you’d expect, and whose movements can reveal important insights into seizure activity. When she’s not actively advancing discoveries at Boston Children’s, she’s mentoring the next generation of physician-scientists.
Why are zebrafish such a powerful model for epilepsy research? Zebrafish share many brain structures with humans, and they’re genetically editable, which makes them very useful. We can introduce a change in a single gene—like one identified in a child with epilepsy—and then observe how that gene affects zebrafish brain development and behavior. We can even measure their brain activity, just like we would with an electroencephalogram in a child. And because we can study hundreds of fish at once, we get a lot of data quickly.
You’ve focused on developing targeted therapies for epilepsy. How do these treatments improve care for kids like Charlotte? Targeted therapies are designed to address the genetic change that’s causing a person’s condition. That might be a medication that works especially well for a given gene, or it could involve gene therapy—delivering a healthy copy of the gene into brain cells to correct the problem at its source. Such treatments are within reach for an increasing number of genetic conditions.
You’ve had mentors throughout your career—and now you mentor others. Why is that important to you?
We’re on a lifelong journey as both mentees and mentors. It’s not just about teaching—it’s about building a community where we learn from one another. It’s incredibly rewarding to see trainees become colleagues and then mentors themselves. And practically speaking, we need more people doing this important work. We’re discovering genes linked to brain development every year, and we don’t yet have enough scientists to study them all. Mentorship fosters the growth and the future of our field.
logram cap to measure brain activity). First, they put one on Pink Poodle (my favorite stuffed animal), and that made me feel brave.
She’s a 5-year-old with a big imagination, a love of rainbows, and more courage than most grown-ups. Diagnosed with infantile spasms at age 2, Charlotte has spent years fighting epilepsy with grit, joy, and the steady support of child life specialists—who show up with crackers (Charlotte’s favorite snack) when she’s hungry, comfort when she’s scared, and just enough magic to make hospital stays feel like sleepovers.
If you could decorate your hospital room any way you wanted, what would it look like?
I would decorate with unicorns and rainbows! I love rainbows.
If you were in charge of the hospital for a day, what would you do?
I would put musical stairs everywhere!
Can you think of a time you felt really brave at the hospital? I was scared when I had to wear the cap (an electroencepha-
Do you have a favorite person at Boston Children’s?
Dr. Chris (Pediatric Epileptologist Dr. Christina Briscoe Abath) because she talks to me, not just the grown-ups, and is never in a hurry. And Alyssa (from Child Life) who doesn’t poke me with needles.
What’s the best part about staying overnight? Sometimes it feels like a sleepover. I eat snacks and play games. On special days I get to have dessert for dinner!
Kate, how has having a child with epilepsy changed your life? I never thought I’d write a children’s book, but I wrote one about bears with infantile spasms to spread awareness. I want to do everything I can to support progress at Boston Children’s. Charlotte’s medication was only recently approved for kids. It can take almost 20 years for a drug to be developed and authorized—which is a child’s whole lifetime. We have to keep research moving ahead.
THE PATIENT AND HER MOM: Charlotte and Kate
“I see it every day. Unrestricted giving makes a hospital a haven.”
CHIEF MEDICAL OFFICER VINNY CHIANG, MD, KNOWS EVERY CORNER OF BOSTON CHILDREN’S. INSPIRED BY THE FAMILIES HE MEETS AND THE CAREGIVERS HE LEADS, DR. CHIANG AND HIS FAMILY JOINED THE CEO’S CIRCLE OF IMPACT TO TAKE ON THE TOUGHEST CHALLENGES IN CHILD HEALTH. (PICTURED HERE: EVERLEY AND FAMILY)
PHOTOGRAPH
Beth Ann Fricker
Growing Tomorrow’s Leaders, Today
THE SEEDS OF FUTURE DISCOVERIES HAVE ALREADY BEEN PLANTED. THEY’RE TAKING ROOT ACROSS BOSTON CHILDREN’S IN THE PEOPLE WHO WILL PROPEL THE WORLD’S NEXT LIFE-CHANGING BREAKTHROUGHS.
WITH THE HELP of generous donors, Boston Children’s is driving the next generation of pediatric medicine by investing across its workforce.
Young Adults
Classrooms are the launching pad for prospective health care workers. Yet many students don’t realize how many opportunities are available in a pediatric hospital. The Community, Opportunities, and Advancement at Children’s Hospital (COACH) internship program seeks to close this gap by raising awareness among local students about health care careers and the skills needed to pursue these jobs. Since its launch in 2007, COACH has expanded to colleges to deepen students’ engagement with the hospital.
One of the program’s first interns, Chandreka Wright, is now director of the hospital’s Child Care Center. She credits COACH with exposing her to a promising career path that she otherwise may not have considered. Now she continues COACH’s legacy by regularly hiring interns. College graduates pursuing an advanced degree in medicine and clinical research face fierce competition. Many research and clinical leaders act as mentors for aspiring physician-scientists employed in their labs. A gift from an anonymous donor helped formalize support for recent graduates specifically interested in developmental research through the Research Scholars Program in the Division of Developmental Medicine. The program embeds participants in labs, helps them build connections with experts, and
offers professional development. It also provides an opportunity to pursue an independent research project. Anjali Bose, an inaugural scholar, is studying the brain’s developmental trajectory in neurodiverse populations, a cutting-edge area that unites psychology and neuroscience. Bose says the program helped hardwire her brain to think like a scientist, laying the groundwork for a productive career.
Since 2012, Nate Simons, a young man with Down syndrome, has built his career in the Developmental Medicine Center. In a full-time role supported by the Tapley Family Fund, Simons welcomes patients, stocks exam rooms, and manages Mae’s Market, which provides families with free books and educational materials. Kids love seeing him, and parents love chatting with Nate about living on his own, his cooking skills, and his Special Olympics’ medals. “He’s a fantastic role model and not just for our patients. Nate has presented about his life and work experience with our program at national conferences,” says Angela Lombardo, MSW, Down syndrome program manager.
Early-Career Researchers
Early-career researchers are the engines of discovery, bringing fresh perspectives and novel techniques to the lab. But they need resources to grow their ideas—and traditional funding typically requires data, which junior investigators don’t yet have. Philanthropy can provide a bridge, helping some investigators launch their careers.
BY THE NUMBERS
3 60 local organizations partner with Boston Children’s to accelerate job training and opportunities for individuals across the city.
3 800 students have participated in internships through COACH.
3 1,400 earlycareer researchers work at Boston Children’s.
REILLY BIRMINGHAM, BSN, RN, WITH BOSTON CHILDREN’S PATIENT BEN
“Supporting early-career researchers is critical because they have a hunger to explore new areas,” says Nancy Andrews, MD, PhD, executive vice president and chief scientific officer. “We need to nurture their talent and creativity as they become our faculty of the future.”
The Translational Research Program (TRP) is a key driver of innovation. Through donor-funded awards, it supports clinical trials seeking to improve care for children with serious diseases. After receiving a TRP award in 2020, Vassilios Bezzerides, MD, PhD, accelerated several projects investigating the heart’s electrical system— including a biological pacemaker that mimics the heart’s interactions with the nervous system and grows with the child. If successful, it would solve an ongoing challenge: the need for multiple surgeries as children with heart failure or other cardiac irregularities grow but their mechanical pacemaker doesn’t.
A 2024 TRP award enabled Alissa D’Gama, MD, PhD, to launch her lab focused on improving care for infants and children with neurogenetic conditions. For example, epilepsy affects 1 in 26 individuals, can take years to genetically diagnose, and has limited targeted treatments—challenges magnified in diverse communities. Dr. D’Gama aims to more rapidly diagnose and treat patients with these conditions and widely disseminate innovations.
Donors Nina Korsisaari and Derrick Rossi, PhD, understand philanthropy also can attract promising scientists. Their support enabled Boston Children’s to recruit Julia Li, PhD, who discovered a missing link between virus-like sequences found
in human DNA and chromosomal abnormalities found in cancer and genetic diseases. Now, several foundation grants—the Damon Runyon-Dale F. Frey Award for Breakthrough Scientists and a Smith Family Award for Excellence in Biomedical Research—are empowering Dr. Li to pursue how and why this instability occurs.
“Establishing a lab is daunting, but these awards allow me to pursue challenging questions that are fundamental for understanding human disease,” says Dr. Li. “That support means everything as I establish my lab and search for answers.”
Nurses
Creating opportunities for employees at every stage of their career is vital for retaining a skilled workforce—which Glorianne Demoulas, co-owner of the Market Basket grocery chain, knows firsthand. Her parents instilled in her the importance of elevating their frontline associates and giving back to the community. The Demoulas Family Initiative for Nursing Professional Development honors their memory by supporting lifelong learning for nurses.
“Nurses contribute in extraordinary ways, coordinating and shaping so much of what patients and families experience,” says Demoulas. “Investing in their growth is a powerful way to celebrate and strengthen their profession.”
By nourishing its greatest assets—its people—Boston Children’s is growing a strong, forward-looking workforce that propels care today and seeds tomorrow’s breakthroughs.
DR. BEZZERIDES’ RESEARCH COULD IMPROVE CARE IN THE CARDIAC CATH LAB.
Crisis to Wellness
Building Mental Wellness
The Caregivers
There are times when Matthew Siegel, MD, MBA, lies awake at night. The chief of clinical enterprise at Boston Children’s and chief behavioral health officer at Franciscan Children’s doesn’t doubt our ability to help kids struggling with anxiety, depression, or suicidality. He worries, instead, about their access to help.
Across the United States, 122 million people live in areas without enough mental health providers, preventing timely access to treatment that could prevent milder disorders from escalating to serious illness. And with shortages of psychiatrists, counselors, and other specialists projected through 2037, the number of kids in crisis is only growing.
At pediatric hospitals nationwide, including Franciscan Children’s, psychiatry units that offer intensive care may have empty beds—not for lack of patients but because there aren’t enough behavioral health technicians to support them. These essential team members don’t need a degree or certification, but they play a critical role: spending hours a day helping young people manage emotions, modeling healthy interactions, and supporting families.
Demand for these frontline workers will swell when Boston Children’s and Franciscan Children’s open a first-of-its-kind campus that will offer everything
from early intervention to crisis care. So, as leaders plan the campus, Dr. Siegel is working with them to build the necessary workforce.
The behavioral health workforce academy will recruit, train, and retain critical staff and develop the next generation of mental health professionals. This initiative will provide opportunities for people from a range of backgrounds, with a goal of creating a responsive, sustainable system of care that reflects the communities it serves.
“We believe if more young people are exposed to this deeply rewarding work, many will build careers in it,” says Dr. Siegel.
To help launch the effort, Lawrence Fish made a generous gift to fund a community workforce development specialist at Franciscan Children’s. The new role is focused on identifying high-potential entry-level workers and helping them navigate the hiring and onboarding process.
“Investing in workforce development was an easy decision,” says Fish. “Franciscan Children’s provides lifesaving care. The community needs more of it. The missing piece is a strong pipeline of workers. The talent is here—especially in our vibrant communities of new Americans. I hope this program helps find and grow that talent.”
MYRIAM VAN NESTE
The Campus
Boston Children’s and its sister hospital Franciscan Children’s are building New England’s premier home for child mental health care—where nature and art play a vital role in healing. Our campus design reclaims nearly seven acres of green space, creating a sanctuary that will soothe patients and their families, support staff well-being, and enrich the surrounding community. A lush, vibrant garden will span the length of the campus, featuring striking installations by local and regional artists.
THE POWER OF PHILANTHROPY OUR SINCERE GRATITUDE TO CAPITAL DONORS: AURA, JONATHAN AND JENNIFER BLOCK, THE CORKIN FAMILY, RANDI AND JOEL CUTLER, TOM AND MIDGE DESIMONE, TED AND MAUREEN ENGLISH, DAVID AND NINA FIALKOW, JEFF AND MARY FURBER, KAREN AND ROB HALE, ESTATE OF JOAN LEWIS, NEW BALANCE FOUNDATION, AND YAWKEY FOUNDATION.
WATCH THE VIDEO TO SEE HOW OUR NEW CAMPUS WILL HELP KIDS AND FAMILIES.
Dr. Mary Margaret Gleason: Early MissionIntervention
AS MARY MARGARET GLEASON, MD, built her career in pediatrics and psychiatry, she saw how tough it was for adults whose struggles started in childhood and how long it can take for kids to get the help they need. As the Robins Family Chair in Early Childhood and Boston Children’s first chief of early childhood, training, and education, she is focused on finding new and better ways to support the mental well-being of the youngest children.
A child’s rapid growth from birth through early elementary school offers great possibility. Dr. Gleason emphasizes most children are healthy but may need some support to get through a time when experiences have a powerful impact on development. Little ones can display feeding aversions, obsessive tendencies, disruptive behaviors, or aggression, signaling a need for help to navigate big emotions. And trauma can occur in early childhood. “Many parents feel powerless and blame themselves. That’s not fair,” says Dr. Gleason. “We know what works from research. We need to adapt it for real-world application.”
By equipping parents, caregivers, teachers, and other trusted adults to recognize mental health risks, experts can help children at the earliest stages. This model can minimize the typical eight- to 10- year delay between a child’s first symptoms of mental health challenges and treatment.
Dr. Gleason aims to expand initiatives in
psychiatry and behavioral sciences, bringing mental health promotion tools to places where families spend their time, such as child care centers and pediatric clinics. “I’m excited to work with the amazing providers in these areas and create a platform that will allow families to have a seamless transition through different services.” She plans to develop an infant and early childhood fellowship and educate pediatric residents and primary care doctors. By spearheading early childhood services at Boston Children’s and our sister hospital, Franciscan Children’s, Dr. Gleason believes the growing team can create a national model for a comprehensive, research-driven continuum of care.
Philanthropy plays a key role in achieving these ambitious goals, a reality that resonated deeply with Shannon Robins, a mother herself. She remembers first hearing about Boston Children’s commitment to solve the mental health crisis at the Champions for Children’s fundraising gala. “Dr. Gleason’s groundbreaking work and vision for the future of child mental health inspired our support. A psychiatric chair accelerates transformational care, enabling kids and families to get help sooner, before they hit a crisis point.”
The stakes are high, but Dr. Gleason is driven each day to reshape childhood narratives and healthy relationships, changing lives and communities for this generation and those to follow.
I’m excited to work with the amazing providers in these areas and create a platform that will allow families to have a seamless transition through different services.
New Funding
THE PRINCIPAL INVESTIGATOR
Yana Pikman, MD
Attending Physician, DanaFarber/Boston Children’s Cancer and Blood Disorders Center
THE SCIENTIFIC QUESTION
Can new discoveries halt a deadly pediatric cancer?
THE FUNDING
V Foundation for Cancer Research, through the Dick Vitale Pediatric Cancer Research Fund with support from Hockey Fights Cancer, identified Dr. Pikman as a top physician-scientist whose pioneering work in cellular metabolism could lead to breakthroughs in blood cancer research.
WHY IT’S IMPORTANT
Despite significant advances in the treatment of pediatric cancer, leukemia remains the second leading cause of cancer-related death in children. T-cell acute lymphoblastic leukemia (T-ALL) is an aggressive blood cancer that affects both children and adults. When T-ALL does not respond to chemotherapy or returns after initial treatment, patients are left with few treatment options.
LEUKEMIA
WHAT IT SUPPORTS
Dr. Pikman is working to understand how energy and building processes within T-ALL cells are altered. She hopes to target these mechanisms with drugs adapted from those that have shown promise in treating solid tumors in clinical trials.
She is studying how these drugs influence cells’ use of methionine, an amino acid that is needed for healthy cell growth but that tumor cells use for their own proliferation.
If she can tweak these drugs to fight blood cancers like T-ALL, she hopes to advance the treatment to clinical trials.
TOP: KEVIN B. CHURCHWELL, MD, WITH MARTY WALSH, EXECUTIVE DIRECTOR OF THE NATIONAL HOCKEY LEAGUE PLAYERS' ASSOCIATION AND FORMER BOSTON
CHILDREN'S PATIENT
THE PRINCIPAL INVESTIGATOR
Gena Heidary, MD, PhD
Director, Pediatric NeuroOphthalmology Service
THE SCIENTIFIC QUESTION
How can experts better diagnose visual impairment in children with developmental conditions?
THE FUNDING
In honor of her late brother, who had Down syndrome and vision loss due to cataracts, Boston Children’s nurse and clinical coordinator Victoria Klumpp, RN, BSN, established the Matthew Floyd Fund for Down Syndrome and CVI Research. Driven by a family trust dedicated to advancing research into childhood blindness and improving outcomes for individuals with Down syndrome, Klumpp chose Boston Children’s as the fund’s home. “I explored other institutions, but ultimately felt Boston Children’s would make the most meaningful use of this gift. After many years here, I trust the hospital deeply— and the project, along with Dr. Heidary’s enthusiasm, made the decision feel right.”
WHY IT’S IMPORTANT
Cerebral/cortical visual impairment (CVI) is one of the most common causes of visual impairment in children. With CVI, the eyes may be healthy, but the brain has trouble processing what the eyes see. The condition isn’t always apparent with a routine eye exam, so diagnosing CVI can be challenging. Children with neurological or developmental conditions, such as Down syndrome, may go undiagnosed—and misunderstood—for years.
VISION LOSS
WHAT IT SUPPORTS
Dr. Heidary is spearheading efforts to develop specialized testing protocols and a more accessible CVI-focused clinic to accurately identify the condition in children with cognitive differences.
Additionally, Dr. Heidary is seeking to better understand how CVI impacts children with Down syndrome and how best to support these children. The goal is to ensure that every child— regardless of communication style or developmental ability—can receive the vision care and support they need.
MARIAM, A BOSTON CHILDREN'S PATIENT
Big Questions
HOW CAN PARENTS PROMOTE SAFE AND SMART SCREEN USE?
GAMING FOR HOURS on a rainy Saturday. Texting after bedtime. Scrolling social media while doing homework. Kids move effortlessly between screens and what their parents call “the real world.” But as kids connect more, parents worry more. Keeping them safe and healthy in a vast online environment can seem overwhelming.
While some experts call for a return to tech-free childhoods, researchers at the Digital Wellness Lab recommend a more practical and balanced approach. “Media technologies aren’t going away. Just as we teach kids to drive a car, we need to help them master these tools in ways that are healthy, smart, and respectful of themselves and others,” says Michael Rich, MD, MPH, founder and director of the lab.
Known in tech and health care circles as “the mediatrician,” Dr. Rich offers strategies for fostering healthy media use.
3 PARENT IN THE DIGITAL SPACE: Model healthy uses of technology yourself, and engage with media with your child. This might include playing games together or selecting and posting vacation photos. Reflect with your child about how they feel and what they learn online.
3 START MEDIA LITERACY DISCUSSIONS EARLY: Help kids think critically about what they see and hear online and in media. Talk with them about computer-generated images. Evaluate ads together. Listen to their joys and concerns about their online lives and share your own in ongoing, open conversations.
3 USE SAFETY TOOLS: Learn about and implement
parental controls on the platforms your child uses. Discuss how to interact with trusted friends and how to keep information private online. Establish boundaries that you and your child feel comfortable with. Kids are often hesitant to report or block people, so guide them in using safety mechanisms.
3 FOSTER RESILIENCE AND SELF-PROTECTION: Keep an open dialogue and a no-blame-no-shame policy around online behaviors, so your child trusts you as an ally when they encounter behavior or content that they need help to address. Build their skills by working through challenges together and help them to focus on what’s healthy for them and respectful of others.
3 EMBRACE CONNECTION: Recognize that online platforms can provide supportive communities. Marginalized or isolated teens can find companionship and understanding through shared challenges such as a chronic illness or niche hobbies like songwriting.
3 BE INTENTIONAL ABOUT TIME: Help your child to reflect on how they choose to spend their time and what they might not be doing because of screen use. Point out that online activities can be solitary, social, passive, or active. Discuss the varied nature of their experiences— and how each makes them feel.
Kids grow up fast, and technology evolves even faster, continually reshaping their world and behavior. By guiding them to navigate the online environment safely and thoughtfully, we’re preparing kids to thrive today and in the future.
FORE! PEDIATRIC RESEARCH
Philanthropic foursomes gathered at the Winged Foot Golf Club in Mamaroneck, NY, tackling the legendary course and supporting the CEO Strategic Research Priorities Fund. Trust Board member Nancie Julian and her husband Bill Forrest sponsored the event, aiming to raise awareness about Boston Children’s research mission and its impact on children everywhere.
KEVIN B. CHURCHWELL, MD, WENDY CHUNG, MD, PHD, NANCIE JULIAN, BILL FORREST
A WALK TO REMEMBER
On June 8, thousands of participants in the Eversource Walk for Boston Children’s Hospital stepped up to raise over $1.2 million for the Every Child Fund. Some walked, some rolled, and some caught a ride on their grown-up’s shoulders, but everyone moved with purpose and a whole lot of heart. It was a day buzzing with love, laughter, and sole! A huge shoutout to Eversource for lighting the way—and providing support to keep everyone moving mile after mile to help sick kids.
LEARN MORE
JOHN DEPUTY (TOP); CHUAN DING
LIGHTS! CAMERA! FASHIONISTAS IN ACTION!
Since 2021, Jodie Lasonde and Laurie Dillon have been pairing compassion with fashion. Through Boston Children’s Fundraise Your Way Program, the duo has stitched together seven stunning charity fashion shows, raising more than $30,000 for areas of the hospital that matter most to them. Their eighth show—set to hit the runway in September—will support the Down Syndrome Clinic. Jodie, Laurie, and their modeling crew are proving that philanthropy never goes out of style.
EZEKIEL OLUKOYA ON THE RUNWAY
401 PARK DRIVE, SUITE 602 BOSTON, MA 02215-3354
THREE CHEERS FOR BJ’S WHOLESALE CLUB!
The three-time presenting sponsor fielded three all-star fundraising teams at Corporate Cup. Together, the 62 competing teams raised more than $1 million to support groundbreaking research and care for kids at our annual field-day fundraiser.
