Fromthe desk of James P. Digan
After being part of the Nemours Children’s Health community for four years, I continue to be impressed by our donors’ and volunteers’ incredible generosity and dedication. You have taken it upon yourselves to address our nation’s shortage of resources for children’s health care through contributions ranging from teddy bears for inpatients to endowments supporting tomorrow’s treatments for pediatric diseases. Your gifts, regardless of size or type, are tremendously appreciated and bring us closer to our vision of creating the healthiest generations of children.
In this issue of In the Loop, you will read about the impact of your giving and see some exciting Nemours Children’s updates from across our system. You will see stories like those of Mackenzie and Omari, who obtained the care they desperately needed to control chronic illness and birth defect. You will learn about our innovative use of animal-assisted therapy at Nemours Children’s Health, Jacksonville. We will also introduce you to our new Delaware Valley president and give you the latest on bold initiatives to address health equity and improve care and outcomes for children with pediatric cancers.
With your help, Nemours Children’s has become a beacon of hope and healing for children and families, many of whom are from underserved communities and have limited financial resources. Over the last several years, our health care team’s reputation for compassion, excellence and innovation in care and research has soared. So, too, has our patient population by leaps and bounds.
Seeing the community come together to celebrate and support Nemours Children’s is always a special occasion, and this year, two galas were held to support regional hubs. The Delaware Valley gala was held on April 6 followed by the Jacksonville gala on May 10. Your gala participation empowers us to build the infrastructure necessary to provide top-tier care and leverage our strengths across our system to tackle the most significant issues in pediatric health.
This is an exhilarating time for us, and your continued support and partnership fuel our momentum. We are on the cusp of a truly transformational moment for our health system and for children’s health and it’s because of supporters like you!
Thank you for believing in the Nemours Children’s mission and for all you continue to do to create a better, healthier world.
With gratitude,
James P. Digan President, Nemours Children’sHealth
AllianceThe Nemours Children’s Health Integrated Behavioral Health Initiative, launched in 2021, embeds pediatric psychologists, counselors and social workers within pediatric primary care offices to increase patient access to holistic mental health services and reduce the stigma of treatment.
A generous grant from TD Bank, America’s Most Convenient Bank®, allowed us to implement and lead a pilot program that was the forerunner to the Integrated Behavioral Health Initiative, which aims to provide equitable and increased access to pediatric mental health specialists.
“The pediatric population has shown a marked increase in behavioral health issues. At the same time, we have seen a significant decline in behavioral health resources,” says Medical Director of Primary Care for Nemours Children’s Health, Florida Tom Lacy, MD.
“Early and consistent intervention is key to successful mental health services that are so important in helping children lead healthy and happy lives. The funding from TD Bank helped us begin reaching that lofty goal.”
“There is a critical need for pediatric mental health services,” said Head of U.S. Corporate Citizenship at TD Bank Shelley Sylva. “To build a better future, we need to make sure that people of all ages have access to the care they need. We are thrilled to support Nemours Children’s Health to help increase access to care and improve health outcomes for children.”
Providing psychological care and assessment for pediatric patients who are experiencing cognitive or behavioral problems related to their chronic illness is the specialty of clinical psychologist Monica Barreto, PhD, Nemours Children’s clinical director for behavioral health for primary care in Central Florida. She also treats patients who are experiencing emotional, behavioral and cognitive concerns, including anxiety, depression, distress and sleep difficulties.
“Dr. Barreto has been a lifesaver to our family,” says Karen, whose daughter Mackenzie was diagnosed at age 6 with Chiari I malformation after experiencing headaches and neck pain. Decompression surgery relieved some of the symptoms. However, four years ago, at age 12, she began having chronic migraines due to intractable chronic paroxysmal hemicrania, a primary headache syndrome characterized by sharp and stabbing pain that can occur between five and 40 times per day. The condition led to Mackenzie experiencing anxiety and depression.
The family found the road to connecting with Dr. Barreto long and littered with obstacles. After several years of living with headaches without much long-term relief, Mackenzie’s mental health was being affected. “I don’t know any other way to describe her mood, but these migraines were physically, mentally and emotionally draining,” says Karen.
Mackenzie began to lose interest in socializing with her friends outside of school and even stopped doing things she loved, like competitive Irish dancing. It became too much for her, and she began to withdraw. “Most of these drastic changes took place during the pandemic,” says Karen, although she believes they were actually forming years earlier without the family fully realizing it.
Seeking answers, Karen contacted their neurologist, who recommended counseling. Enter Dr. Barreto, who was at another hospital at that time. After a few short weeks of therapy in the fall of 2022, Karen could already see gradual changes in Mackenzie. “The therapy was having a positive effect on her,” says Karen, and they wanted to continue to see Dr. Barreto even when she transitioned to a new role at Nemours Children’s Health. One problem this new role meant that the family would have to change pediatricians from one they’d seen for Mackenzie’s whole life, who knew Mackenzie’s health history. “I worried about having to start all over again with a new doctor,” says Karen. She recognized the change was vital for Mackenzie’s mental health and was willing to do whatever it took so that Mackenzie could continue her care with Dr. Barreto through Nemours Children’s even if it meant driving more than an hour from their home to see her.
“Dr. Barreto has been a lifesaver to our family.”
Karen, Mackenzie’s mom
Thanks to the Nemours Children’s Health Integrated Behavioral Health Initiative, Mackenzie has seen Dr. Barreto regularly since spring 2023, both in person and through telehealth visits. “Having that security of Dr. Barreto during this vulnerable time of Mackenzie’s life is exactly what she needs,” says Karen. “Mackenzie can be open and honest, and Dr. Barreto is not judgmental.”
She is grateful the two have a strong therapeutic relationship, which Karen says began on their first visit. She knows this is not common. “We have been so fortunate to find a psychologist Mackenzie connected with immediately.”
Dr. Barreto has given Mackenzie tools to work with when she feels anxious. Last fall, Mackenzie took a significant step and stood before her school and made a speech to 33 students and their families, teachers and the principal, something Karen says she wouldn’t have been able to do even a month earlier. “Dr. Barreto helped her the day before, and on that night before her speech, Mackenzie thought about what she said to her and did all the breathing exercises,” says Karen. “It was an incredible breakthrough! I wish Dr. Barreto could have seen her! That is how wonderful and powerful your behavioral health program is.”
As they look to Mackenzie’s future, Karen says their long-term goal is to challenge Mackenzie’s fears one step at a time with Dr. Barreto’s help. She is also working with Dr. Barreto to anticipate some of Mackenzie’s needs as an adult, so she can continue to manage this condition on her own after aging out of pediatric medicine. “Although Mackenzie feels isolated because of the migraines, receiving counseling has given her the release she so desperately needs,” says Karen.
“As a family, we are all trying to help her because, as the saying goes, it takes a village to raise a child. I also believe it takes a village to help a child.”
Gastroschisis. It’s a word Lourdes had never heard before. However, when she was 12 weeks pregnant with their second child, she learned their baby boy, Omari, would be born with gastroschisis, a birth defect where a hole in the abdominal wall beside the belly button allows the baby’s intestines to extend outside of the baby’s body. Because he was born at 36 weeks, Omari was delivered at his local hospital. However, that night, he was transferred to Nemours Children’s Hospital, Delaware, where he had surgery to put his tiny intestines back into his abdomen. It was the first of many surgeries.
As the days turned into weeks, Lourdes searched for coping mechanisms for herself and Omari’s older sister, Malea. She quickly discovered our Child Life services art class for parents and other caregivers. A stuffed teddy bear from Child Life is one of Malea’s favorite toys.
“I’d never heard of Child Life before our family started this journey, and they became a lifeline for us while we were inpatient between June and November. The art classes were extremely therapeutic for me, and my classmates were also experiencing extended inpatient stays,” says Lourdes. “We became a small support group for each other.”
“While critically important to the experience while in the hospital, Child Life services, like art, music and animal therapy are rarely reimbursed by insurance companies,” said Kevin Carraccio, Senior Vice President of Philanthropy for Nemours Children’s. “Instead they rely largely on philanthropy for their sustenance and growth each year.”
As the doctors and nurses addressed setbacks and made progress with Omari, Lourdes appreciated Child Life for creating positive memories for her family. To celebrate Independence Day, Child Life used Omari’s footprint and turned it into an American flag. Over the summer, they also enjoyed Camp WeBelong and a pep rally for the Phillies, among other Child Life events. By Halloween, Omari had “graduated” from the NICU and changed rooms five times. Thankfully, both siblings got to dress up in costumes and had photos taken.
Noted philanthropists Rocco and Mary Abessinio who raised their family in Wilmington, DE are highly respected for their many investments in local nonprofit organizations that significantly impact the community. The pair has been an essential part of the fabric of Nemours Children’s Hospital for decades.
In the 1980s, Mary was a founding member of the hospital’s Auxiliary, long considered by many the lifeblood of the hospital. She began what would amount to more than 30 years of volunteering. Her countless contributions ranged from interacting with and bringing smiles to patients to serving as a cashier in the gift shop named for Rocco and Mary.
With four children of their own, the Abessinios’ devotion to the kids and families we serve originates in part from their deep wellspring of empathy. In her volunteer role, Mary witnessed the extreme stress that can accompany hospital visits or stays. Her activities often revolved around normalizing the hospital experience and finding ways to introduce fun and comfort into the atmosphere, much like our donor-dependent Child Life Department.
In addition to focusing on ensuring patients have access to creature comforts, the Abessinios pledged a significant planned gift in 2014 to support the hospital’s expansion. Most recently, the prominent couple has funded the creation of a playful and interactive new welcome experience wall in the Wilmington hospital’s atrium.
“We are pleased to support Nemours Children’s. The hospital has been a jewel in our community since my sister was a patient in the 1940s,” said Rocco. “It’s heartening to know that thanks to donors even the most vulnerable children and families can access internationally renowned care at Nemours Children’s. Our family is proud to give as the hospital works to create the healthiest generations of children our nation has seen.”
While the Abessinios moved to Boca Raton, FL, 24 years ago, they continue to spend summers in Rehoboth with their children and 12 grandchildren. The Rocco A. and Mary Abessinio Foundation has funded education, health care and religious programs since 2001.
Ginsburg Institute for Health Equity
On Nov. 2, 2023, the inaugural Child Health Equity Symposium was held in Orlando. The event, presented by the Ginsburg Institute for Health Equity at Nemours Children’s Health, aimed to align Central Florida organizations and resources to reduce health disparities among children by focusing on social determinants of health (SDOH). For 80% of factors that contribute to a child’s overall health, SDOH exist outside the walls of hospitals and doctors’ offices and include access to nutritious food, a good education, and safe, healthy environments.
The Ginsburg Institute for Health Equity launched in March 2023 with a transformational gift from businessman and philanthropist Alan Ginsburg and the Ginsburg Family Foundation. The Ginsburg Institute works to eliminate health disparities through community engagement, research, and innovative collaborative programs. It takes a preventive, “upstream” approach to give kids a firm foundation leading to healthy and productive lives.
Over 110 leaders gathered, representing more than 50 organizations and agencies from Central Florida’s business, nonprofit, government and health sectors. The event featured a performance by dancers from Boys & Girls Clubs of Central Florida, marking a milestone for the Ginsburg Institute’s primary aim of convening community partners to increase child health equity.
“We’re trying to break down those silos that exist and look at illuminating those gaps so that we as a collective can fill them and improve the health and well-being of our children here,” said Nancy Molello, executive director of the Ginsburg Institute.
The keynote was given by celebrated health equity scholar Anthony Iton, MD, JD, MPH, health policy and management lecturer at the University of California, Berkeley School of Public Health, and senior vice president for healthy communities at The California Endowment. Dr. Iton’s talk focused on the gulf between privileged and disadvantaged communities, noting that in some neighborhoods, life expectancy is as low as 50 years.
Nemours Children’s President and CEO R. Lawrence Moss, MD, FACS, FAAP, and Chief Population Health Officer Kara Odom Walker, MD, MPH, MSHS, delivered the welcome session with Mr. Ginsburg, who reaffirmed his commitment to health equity and emphasized the importance of the symposium and Institute’s mission.
“I’m very proud to have the Ginsburg family name attached to this work. We are all on the same team to protect young people’s health, and we have an opportunity to make a difference in a united way,” said Ginsburg.
Through a series of working sessions, participants built cross-sector relationships. These mapped resources could be deployed to reduce health disparities and helped identify four priority areas for investment to increase health equity in Central Florida: greater collaboration among social service organizations; enhancing access to services; increasing access to childcare; and improving mental health care.
The work that began at the Child Health Equity Symposium didn’t end as attendees left the ballroom. It was just beginning. Committees built around the four identified priority areas continue to meet, further define goals and align programs to place good health within reach for all children, regardless of their circumstances.
Although the symposium focused on Central Florida, events like this and other Ginsburg Institute programs aim to develop health disparity-reducing solutions that can be scaled nationally. This means the efforts initiated in Orlando can eventually benefit children in communities nation-wide.
“Collectively, I really do think we’re going to make a difference,” said Ginsburg. “Here’s an opportunity for us to get on the same page and to work together.”
“I’m very proud to have the Ginsburg family name attached to this work. We are all on the same team to protect young people’s health, and we have an opportunity to make a difference in a united way.”
Alan Ginsburg
In December 2022, the Lisa Dean Moseley Foundation made a transformational gift of $78 million to support, expand and dramatically enhance Nemours Children’s Center for Cancer and Blood Disorders (NCCBD).
In recognition of the foundation’s immense generosity, the NCCBD was renamed the Lisa Dean Moseley Foundation Institute for Cancer and Blood Disorders. Created with one of the most significant gifts ever made to a U.S. children’s hospital, the new Moseley Foundation Institute has made tremendous progress toward improving the patient experience and health for children and families everywhere.
For decades, care delivered in what is now known as the Moseley Foundation Institute has been designated by U.S. News & World Report as among the nation’s best and has led to Nemours Children’s, Delaware ranking second in the country for community-based pediatric cancer clinical trial enrollment and being recognized as the nation’s only Center of Biomedical Research Excellence (COBRE) for sickle cell disease by the National Institutes of Health.
The Moseley Foundation Institute’s success in treating children with rare and complex cancers, as well as blood diseases like sickle cell, hemophilia and bone marrow disorders, has resulted in an exponential rise in families seeking care leading to a need for more and betterequipped space. Additionally, services are currently scattered across our Delaware campus, and the Moseley Foundation Institute’s clinical trial and training programs have outgrown current spaces.
Building on past generosity, the foundation’s gift supports the construction of an ample, state-of-the-art inpatient
unit for the Moseley Foundation Institute on the fifth floor of Nemours Children’s, Delaware. This space will allow physicians and researchers to care for more children in an environment that transforms the patient experience. The new facility will also address the need for service consolidation while accommodating evolving clinical trial, research and training programs.
“We have some of the world’s leading specialists in pediatric oncology and blood diseases,” said R. Lawrence Moss, MD, FACS, FAAP, president and CEO of Nemours Children’s. “Unfortunately, our current space constrains the growth of our programs, and a full day of long walks between multiple appointments for sick children and their families can be exhausting. The Lisa Dean Moseley Foundation’s gift resolves these issues and unleashes the institute’s potential to spearhead major treatment advances.”
“Every child deserves the brightest future possible, and we are honored that Lisa’s legacy will allow Nemours to continue to make a profound impact on children, in particular those with diseases that have been long overlooked and underfunded, such as sickle cell disease.”
William J. Martin, Esq., president of the Lisa Dean Moseley Foundation
Construction on phase one of the new space overlooking the beautiful gardens of the historic Nemours Estate is expected to conclude in early 2025.
With 24 new inpatient beds, isolation areas for immunocompromised patients, a more prominent comprehensive clinic, more infusion room capacity, and supportive care services, the Moseley Foundation Institute’s ability to serve a growing patient population will dramatically increase. Treatment spaces have been designed to promote healing and encourage play and activity, which has been shown to improve clinical and emotional outcomes.
On May 20, we celebrated the groundbreaking for the first phase of construction.
“This groundbreaking is a critical moment reflecting a broader expansive plan to amplify our ability to care for children with cancer and blood disorders throughout the region and beyond through advanced capabilities and leading-edge research,” said Mark R. Marcantano, JD, president, Nemours Children’s Health, Delaware Valley. “The generous gift from the
Moseley Foundation propels Nemours Children’s to further its existing world-class capabilities and services to improve the health of children, which is directly aligned with Alfred I. duPont’s philanthropic vision.”
The Moseley Foundation donation will be used to make immediate and longterm impacts on pediatric cancer and blood disorder treatment and research.
“Every child deserves the brightest future possible, and we are honored that Lisa’s legacy will allow Nemours to continue to make a profound impact on children, in particular those with diseases that have been long overlooked and underfunded, such as sickle cell disease,” said William J. Martin, Esq., president of the Lisa Dean Moseley Foundation.
To honor our founder and benefactor, Alfred I. duPont, the ceremony also featured a dedication of the Alfred I. duPont Campus as a symbol of Mr. duPont’s and Nemours commitment to the children of Delaware. The Campus serves as the home of multiple entities situated on duPont’s estate: Nemours Children’s Hospital, Delaware, Nemours Estate, the Carillon Tower and more.
Mark Marcantano, president Nemours Children’s, Delaware Valley, patient speakers
Chase Dolgos and Taylor Williams, Geoff Rogers, trustee, A.I. duPont Charitable Trust, Bill Martin, president, Lisa Dean Moseley Foundation and David Brousseau, MD, pediatrician in chief and chair of pediatrics, Nemours Children’s Health, Delaware Valley
“The Assisted Dog and Pony Therapy program (ADAPT) was a vision I had five years ago,” says Jennifer Pfieffer, MSN, clinical nurse specialist and ADAPT co-director. In partnership with the University of North Florida Brooks College of Health, ADAPT is a first-of-its-kind program for pediatric patients that harnesses the power of the humananimal bond to help young patients heal from physical, emotional or psychological illnesses or injuries.
ADAPT works with three miniature horses named Gypsy, Taco and Buc, who live together on a farm off-site and are transported to stables behind Nemours Children’s Health, Jacksonville to provide vital animal therapy services. They are joined by several dogs, including an 8-year-old Cavapoo rescue named Teddy, a 4-year-old Lab-poodle mix named Penny and a 5-yearold Great Dane named Asher.
The program launched as a pilot in 2022, began enrolling patients in the spring of 2023 and has grown from two providers to 10. In addition, it has been modified to increase access to more patients to meet a growing demand for therapy.
“Most of our psychologists and social workers are trained and able to offer the ADAPT services,” says Pfieffer. “There are now different ‘tracks’ that can be offered to our patients one that is six- to eight-week sessions and another that can be offered one to four times based on patient diagnosis.”
Christie Evans, Nemours Children’s patient and family-centered care manager and a member of the ADAPT executive team, stresses the importance of the program and its goal of helping patients who are dealing with serious illness on top of the stressors of daily life.
Nemours Children’s is the first pediatric health care organization in the United States to integrate registered therapy dogs and miniature horses with clinical providers to harness the power of the human-animal bond to help young patients heal. We’ve begun research studies to disseminate findings to other organizations nationwide.
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“Our animal partners are the best listeners and offer zero judgment while a patient works through coping strategies, feelings of fear, anger or anxiety, and handling their diagnosis.”
Christie Evans, patient and family-centered care manager, member of the ADAPT executive team, Nemours Children’s Health
For some, it can take the form of volunteering time or giving annual donations to meaningful causes. For others, it can mean pursuing a path that leads to changing lives through treating illness or making groundbreaking research discoveries. Sometimes, a singular impactful action can check multiple boxes, as with several recently established endowed funds, made possible thanks to the generosity of two donors to Nemours Children’s Health.
Elizabeth W. Snyder sought to make a profound difference in the lives of families seeking orthopedic care at Nemours Children’s Hospital, Delaware. She invested $6.75 million in our mission and established three endowments. Now, those endowments support children with skeletal dysplasia and osteogenesis imperfecta, as well as the research scientists advancing the field and physicians who provide their care.
The Elizabeth W. Snyder Endowed Chair in Osteogenesis Imperfecta and the Elizabeth W. Snyder Endowed Chair in Skeletal Dysplasia are proudly held by pediatric orthopedic surgeons Jeanne M. Franzone, MD, and W. G. Stuart Mackenzie, MD, respectively.
Additionally, the newly established Elizabeth W. Snyder Endowed Family Support Fund will help Nemours Children’s conduct a series of engagement events to encourage teamwork and information exchanges among families, health care professionals and researchers. In addition, the fund will help address the psychological and social issues that affect families of children with special needs.
“These endowments will allow us to grow, develop and promote our program at levels never before conceived,” says Dr. Mackenzie, who sees families from all over the world. “We couldn’t be more grateful to Mrs. Snyder for her confidence in our work and for the trust she has placed in us to advance these critically important fields that impact children and families so dramatically,” said Dr. Franzone.
Lammot du Pont Copeland Jr. whose vision and generous gift of $3 million, will impact our patients, families and clinicians for generations established the Andelot Endowed Chair in Biomechanics and Motion Science.
Suken Shah, MD, chair of Orthopedic Surgery, expressed his profound gratitude to Copeland at the recent endowed chair dedication, saying, “This endowed chair, celebrating the legacy of Louisa d’Andelot Carpenter [Copeland’s grandmother], forever ties the Andelot name to academic excellence in the field of orthopedics.”
These endowments will help Nemours Children’s remain at the forefront of pediatric orthopedic care. Established in 1940, we have one of the oldest orthopedics programs of its kind. Additionally, Nemours Children’s is an international destination for families facing diagnoses of skeletal dysplasia, cerebral palsy, osteogenesis imperfecta and spine conditions such as scoliosis, among others. Our legacy of excellence continues to this day, and year after year, we’re ranked among the premier programs in the nation by U.S. News and World Report
While gifts of all kinds are essential, endowed funds are crucial because they are permanent funding sources, allowing donors to support causes they care about in perpetuity.
Infinite Advocate Initiative
Recently, Cole, a Nemours Children’s patient, made a gift with his family to honor Kimberly “Kimmie” Shoe, APN, through our Infinite Advocate initiative. This program allows families to express their gratitude for our associates who go above and beyond in the care they provide. The nurse practitioner has led care for their son Cole for more than 17 years, serving as an educator, parental mentor, clinician and much more.
Cole’s mom, Laura, explains that their family was thankful for the opportunity to formally share their deep appreciation for Kimmie’s care of their son. “Cole was a miracle baby. Our second child, he was in vitro and had a twin. Sadly, his sibling passed,” says Laura. “After so much difficulty conceiving and a challenging pregnancy, we felt so grateful to have him, a little brother for his big sister.”
However, Laura, who worked in nursing administration at a hospital, instinctively knew that something was wrong soon after Cole was born. Initially, Cole had breathing issues, which they later learned were bronchial coughing spasms. Laura took him to their pediatrician and felt they treated her like she was overreacting. The doctor advised seeing how he was doing after a couple of days. The next step was breathing treatments.
Unfortunately, Cole’s medical issues persisted and shifted. He was urinating through double diapers. Despite repeated calls from Laura, the pediatrician didn’t have much more to offer. In 2005, when he was just 16 months old, they took him to their local emergency room. Cole had just been to their pediatrician to be treated for strep throat. The virus had attacked his pancreas and left him a type I diabetic.
“We had no idea what we were in for, but I knew I wanted to move his treatment from where we had previously been to Nemours Children’s I’d heard good things about the clinicians and care,” said the Aston, PA mom. “By then, he was in a diabetic coma and needed two weeks in the intensive care unit to get him stabilized.”
Not long after, they met Nurse Practitioner Kimmie Shoe, who also has type I diabetes. The 20-year Nemours Children’s veteran relates exceptionally well to parents and patients. She remembers what her parents went through and the things they did because of her diabetes that upset her as a child.
“We really respect Kimmie’s advice and care. She is always a few steps ahead of the diabetes and anticipates our needs,” says Laura. “Cole was an athlete in high school, and Kimmie is a long-distance runner, so she taught us intricate coping skills to give him enough energy to pitch for baseball games while managing his glucose.”
“ We had no idea what we were in for, but I knew I wanted to move his treatment from where we had previously been to Nemours Children’s — I’d heard good things about the clinicians and care,” said the Aston, PA mom. “By then, he was in a diabetic coma and needed two weeks in the intensive care unit to get him stabilized. ”
Laura, Cole’s mom
These days, Cole has blood work every three months. He and Kimmie meet to review his blood sugar patterns and assess his insulin pump sites. Among other benefits, those quarterly meetings are essential for ongoing eye care and setting goals together. Laura explains that over the years, they’ve tried to make Cole’s childhood as normal as possible, but in fact, he had to do things a lot differently than kids without diabetes.
“Kimmie is very passionate, and she’s been our rock,” Laura says. “She is also very kind and optimistic. We’ve been truly blessed that Kimmie has been part of Cole’s journey.” Now a DeSales University criminal justice program freshman, Cole feels that managing his diabetes helped him become more independent earlier than his peers.
“ Kimmie’s seen all my highs and lows, is never condescending, and talks through any issues that come up. Along the way, I’ve seen many doctors who didn’t subscribe to Kimmie’s approach. She’s also incredibly knowledgeable about new technologies and medications for diabetes management. We’re fortunate to have Kimmie on our team. ”
Cole
Nemours Children’s Health, Florida is excited to enter a second year of partnering with the Four Seasons Resort Orlando at Walt Disney World Resort. In 2023, the Four Seasons hosted a celebrity golf tournament, which raised $235,503 to support Nemours Children’s oncology research to ensure families and children have the best possible outcomes for future generations.
Key to the event’s success was the work of partners William Blair, Rob and Cindy Citrone and Dave and Eydie MacInnis.
The Four Seasons Orlando Journey Fund was created with proceeds from the golf tournament. The fund was named to recognize the many parts of each family’s extraordinary oncology journey, which often begins with finding a clinical trial to help their child. Nemours Children’s has the highest number of clinical trials in Central Florida. Trials are the best hope for advancing a cure for pediatric cancer, with early Phase 1 and Phase 2 trials offering the newest and most hopeful treatment options for children with advanced and relapsed cancer.
Nemours Children’s patient Nasir shared his oncology journey with renal medullary carcinoma (RMC), emphasizing the importance of supporting kids and families who need cancer care. In addition, Nasir’s oncologist, Dorothea Douglas, MD, spoke to the attendees, sharing her pivotal research projects related to RMC. Diagnosed with RMC in 2022, Nasir received treatment while he was finishing high school. He is enrolled in Valencia College and plans to transfer to the University of Central Florida to study health sciences and radiography.
“We are deeply grateful to the Four Seasons Resort Orlando for their support, warm hospitality, and generosity in hosting such an impactful event,” says President of the Nemours Children’s Health Alliance James P. Digan.
“Four Seasons Resort Orlando’s unprecedented dedication to ensuring the event’s success was profoundly moving and demonstrated their unwavering commitment to children’s health. We are excited to continue this partnership and create a brighter future for children and families in their communities.”
“We are thrilled to support Nemours Children’s with this considerable donation and are grateful for the generosity of the event attendees, which made our inaugural event so successful,” says Thomas Steinhauer, regional vice president and general manager of the Four Seasons Resort Orlando.
“Four Seasons has a long history of giving back to organizations that are making a difference in pediatric cancer. Our team’s hard work and dedication to planning this signature event really shined through.”
Following the inaugural golf tournament, the Four Seasons helped celebrate World Kindness Day and the holiday season. Four Seasons Resort, Orlando brought spoonfuls of kindness, joy and gelati to the staff, visitors and patients passing through the lobby of Nemours Children’s Hospital. They also launched the resort’s new Holiday Christmas Tea & Toy Drive in December, encouraging patrons to donate new unwrapped gifts to the hospital’s Child Life team.
A celebrity tournament that sold out in just 14 days occurred on Oct. 19–20 and raised more than $235,500. The inaugural outing benefited pediatric cancer research at Nemours Children’s Health, Florida. (see more on p. 16)
Our 5th Annual Brace for the Race 5K was Oct. 21 and benefited kids and families who need our world-renowned Nemours Children’s Orthopedics and Club Foot/Limb Differences care. Scheduled to coincide with World Clubfoot Day, the event drew 430 participants who ran two loops around Nemours Estate.
Approximately 350 guests supported Nemours Children’s at the Daily’s Foundation Charity Golf Tournament. Held at the Ritz-Carlton, Amelia Island, from Nov. 29 to Dec. 1, the tournament is an annual tradition to raise funds for the children and families in the Jacksonville community who need the world-renowned care available at Nemours Children’s.
The home of the Jacksonville Jaguars launched 1,000 participants in our first-ever 10K, 5K and one-mile walk in Jacksonville on Dec. 2. Some $155,000 raised will benefit children and families at Nemours Children’s through our Compassionate Care Fund, which helps restore the health of critically ill and injured children wherever the need is greatest.
Nearly 130 golfers gathered on Feb. 9 at Shingle Creek Golf Club for a great day on the greens and to support the Jennifer Lynn Schott Childhood Arthritis Clinic at Nemours Children’s Hospital, Florida in Orlando. The funds help the clinic maintain the programmatic services and infrastructure necessary to provide a holistic approach to patient care for children dealing with childhood arthritis.
On Saturday, April 6, 450 sponsors, friends, associates and donors gathered at the internationally renowned Longwood Gardens Main Conservatory to witness the impact of their generosity through the Nemours Children’s Health Compassionate Care Fund. The sold-out Night with Nemours gala brought together members of the Nemours Children’s family for delicious food and libations, as well as great music and dancing all to benefit the most vulnerable kids in our community.
Jacksonville Gala Features Delicious Food, Great Entertainment and our Partnership with the Daily’s Foundation
A sold-out crowd came together at the Ponte Vedra Inn and Club to support the Nemours Children’s mission. Honorees included Dr. Michael Joyce and retired Nemours Dr. Cynthia Gauger. President and CEO of First Coast Energy and President of the Daily’s Foundation, Aubrey Edge, was honored for his contributions to Nemours Children’s Health, Jacksonville, and the Jacksonville community.
Supporting Kids with Hearing Loss and Research for Hearing Conservation at Hear We Go
The 16th Annual Hear We Go 5K and Family Fun Day took place at Nemours Estate on Saturday, May 19. Proceeds supported our clinical and research programs at Nemours Children’s Hospital, Delaware related to hearing loss and hearing conservation in children in our community.
Saturday Sep. 21
Wilmington
Monday Sep. 23
Wilmington
Thursday–Friday Oct. 17–18
Orlando
Friday–Sunday Nov. 22–23
Philadelphia
Saturday Dec. 7
Jacksonville
6th Annual Brace for the Race at Nemours Estate
Proceeds will benefit patients and families that need Nemours Children’s Orthopedics and Club Foot/Limb Differences care in Delaware.
Delaware Golf Tournament at DuPont Country Club
Proceeds will benefit the Delaware Nursing program.
Four Seasons Resort Orlando Hosts Invitational Celebrity Golf Tournament
Proceeds will benefit kids and families in our Oncology Department in our Orlando hospital.
Philly Marathon and Nemours Children’s Run
Proceeds will benefit our Compassionate Care Fund in Delaware.
KidsHealth Run and Walk
Proceeds will benefit our Compassionate Care Fund in Jacksonville.
Pediatric Rheumatologist AnneMarie Brescia, MD, was in the early stages of her career when she applied for a grant through the Arthritis Foundation to support her research on the pathologies of juvenile idiopathic arthritis (JIA), an inflammatory arthritis that affects children. Although her work was worthwhile, the timing wasn’t ideal it was in the middle of the economic downturn about 15 years ago. The Arthritis Foundation’s resources had become limited, and many proposals were left unfunded.
Luckily, the Arthritis Foundation had recently established a relationship with the Nancy Taylor Foundation for Chronic Diseases, which was interested in funding innovative research like hers. “We looked at several proposals that had applied for [Arthritis Foundation] funding,” says Ed Taylor, MD, president of the Nancy Taylor Foundation and a retired medical doctor. Of the four or five they reviewed, one jumped out. “Dr. Brescia’s was intriguing because she was trying to find out if she could differentiate JIA’s different forms or subtypes with blood tests and synovial fluid.” They provided funding for Dr. Brescia’s initial twoyear grant and have continued their support.
The Nancy Taylor Foundation for Chronic Diseases was founded in 2008 by Dr. Taylor’s father, Ed Taylor, a satellite communications pioneer in the 1970s and 1980s whose first wife, Nancy, had a then newly discovered and debilitating autoimmune disorder called chronic fatigue and immune dysfunction. Nancy passed away in 2007 from the illness she lived with for 20 years and the foundation honors her legacy by supporting a small selection of universities and hospitals.
“My father had a couple of things he wanted to focus on, like underfunded research for chronic diseases like JIA,” says Dr. Taylor. “He also wanted to support young researchers in developing their careers.” According to Dr. Brescia, their early support of her lab did just that by laying the groundwork to secure outside funding, including a mentored, patient-oriented research career development award she received from the National Institutes of Health.
Because JIA is an often overlooked and underfunded area of study, the longtime support from the Nancy Taylor Foundation for Chronic Diseases is significant. “Their philanthropy has made a lasting impact on the field of pediatric rheumatology by allowing us to continue our investigations into the prognosis of JIA,” says Dr. Brescia. “Through their generous support, we can answer important questions for families and publish our work to contribute to medical knowledge in the field.”
Dr. AnneMarie Brescia
Nemours Children’s Health, Malvern is officially open at 30 Worthington Boulevard in Uptown Worthington. The two-story, 43,000-square-foot facility provides families of Main Line Philadelphia and beyond access to a state-of-the-art pediatric multispecialty care and surgery center. In 2023, Nemours Children’s Health served more than 81,000 Pennsylvania children, with more than 40,000 living within 30 minutes of Malvern.
On April 20, Nemours Children’s families, associates and community partners gathered for a grand opening celebration. Guests enjoyed hearing from Meg Frizzola, DO, chief of medical staff, Delaware Valley; Mark R. Marcantano, JD, president, Nemours Children’s Health, Delaware Valley; members of the Chester County Board of Commissioners; Brett Shannon, MD, pediatric orthopedic surgeon; and Barbara D. Wilson, MHA, administrator of strategic implementation and optimization. Kristi and Alex Schollenberger shared their family’s experience with Nemours Children’s.
“Our expansion in Malvern allows us to provide a broad range of pediatric services to meet the needs of even more Pennsylvania children,” said Marcantano.
The new site is designed to ensure a positive patient and family experience and a seamless continuum of care for children with various acute and chronic conditions.
Conveniently located near major highways, Nemours Children’s, Malvern features 16 specialties, including adolescent medicine, cardiology, developmental medicine, endocrinology, gastroenterology, neurology, orthopedics and otolaryngology (ENT). More specialties will be added in the coming months. The center also offers ambulatory surgery; medical imaging (X-ray and ultrasound) and other diagnostics (ECHO, EEG, EKG, spirometry); physical, occupational and speech/feeding therapy; and sleep studies.
Malvern is one of three new specialty care centers to open in Southeastern Pennsylvania over the last year, including our Abington center, which replaced and expanded our Willow Grove location, and Broomall, which consolidated our Bryn Mawr and Newtown Square locations.
Like Malvern, our Abington and Broomall location, along with Glen Mills and Philadelphia, offer patients and families a variety of pediatric specialty care services in kid-friendly spaces that set a high standard for quality and safety.
Launching these and other Nemours Children’s specialty care centers enables children with some of the most complex medical conditions to obtain the exceptional care they need in one location, close to home.
To learn more about Malvern, visit Nemours.org/Malvern
Mark R. Marcantano, JD, assumed the role of president for Nemours Children’s Health, Delaware Valley (NCHDV) in January.
With a passion for health care and children’s health, his leadership will focus on our commitment to high-quality patient care, accelerating academic and clinical innovation, and furthering our vision to create the healthiest generations of children by going well beyond medicine.
Marcantano has served in several prominent pediatric academic institutions, including his most recent role as chief administrative officer for Johns Hopkins Children’s Center.
We sat down for a Q&A with Mark to get to know the new president better and hear about his goals for NCHDV.
Coming from an academic background steeped in business and law, what first attracted you to the health care field?
It was the field’s tripartite mission delivering worldclass care to patients and families, training the next generation of physicians and other health care leaders, and making discoveries leading to new treatments and better health. I was drawn by the opportunity to really make an impact on that mission and to serve the community and the greater good.
As someone with nearly 30 years of leadership experience in the pediatric health care and health care technology fields, what do you think makes Nemours Children’s unique?
First and foremost, it’s our bold and inspiring vision to create the healthiest generations of children. Nemours Children’s goes well beyond providing high-quality pediatric medical care. We’re also promoting an entirely new health care model that emphasizes upstream preventive approaches focused on social determinants of health to attain the best health outcomes possible.
We also have an amazing team from our doctors, nurses and researchers to technicians, support staff and everyone in between that comes together daily to help us achieve our vision.
What’s your favorite way to spend your leisure time?
A great day for me is spent with my wife, children and my dog, Buddy, preferably on a beach or at one of the many fabulous parks in the area.
What are some of your goals as NCHDV regional president?
One of my initial goals is to go on a listening and learning tour to get to know what we do on a dayto-day basis, to speak with key stakeholders, and really earn my place as a member of the leadership team and of the Nemours Children’s and Delaware Valley communities.
I’m focused on collaborating with all of our outstanding associates to achieve our objectives for the Delaware Valley in accordance with our strategic plan. I believe in integrated health systems and their ability to create large-scale, positive impacts on community health. Although my primary focus is on the Delaware Valley, we’ll need to think about scaling our successes not only across the region, but also throughout the entire system.
What do you like most about living in the Delaware Valley?
It’s been wonderful. My wife, Debbie, and I are now settled into our new home in Wilmington. This is a beautiful region of the country with some fantastic architecture. The people here are just amazing — and very proud to be Delawareans. We have also received an incredibly warm welcome and a level of interest in us joining this vibrant community that I have not experienced elsewhere.
and Matthew Marcantano at the Delaware gala
I am often asked, “What is planned giving, and how does it differ from estate planning?” The concepts are related and are sometimes (incorrectly) used interchangeably in charitable giving. Planned giving is just what it sounds like a charitable gift that requires planning. So, it could be a gift from an estate, but it could also be a gift of assets such as a charitable trust or even real estate while you’re still living. The most popular planned gifts simple wills and trusts are typical for estate planning.
“Estate” sounds like something that would be exclusive to the wealthy. However, estate planning is simply deciding where your stuff should go. If you have a house, car, savings or retirement accounts, then you have an estate. It would be best if you planned to have those assets dispersed in a way that honors your values and priorities. That means sharing them with the people and causes that mean the most
Increasing philanthropy with corporate matching gifts is easy, but we need your help!
to you. And since charities like Nemours Children’s Health are often on a short list of meaningful causes, estate planning often involves planned giving.
Nemours Children’s was brought to life through an estate gift established by our founder, Alfred I. duPont, in the 1930s. Based on his wishes, the Nemours Foundation was incorporated in 1936. To honor that generosity and build on the success of what was the Carillon Society, we created the 1936 Society. The group recognizes donors who share Mr. duPont’s vision of planning ahead for the needs of our children and who support Nemours Children’s through the commitment of a planned gift such as a will, trust, life insurance policy, retirement plan or gift annuity.
To learn more about making a planned gift and joining the 1936 Society, please get in touch with me at clinton. travis@nemours.org or on my cell at 614.743.4903
Nemours Children’s Health honors all requests for anonymity.
Corporate donation matching is a giving initiative in which an employer matches their employee’s contribution to a specific cause, such as Nemours Children’s Health, increasing the gift. For example, if a Smith Corporation employee donates $50 to us, the matching gift would be Smith Corporation’s additional donation of $50. Instead of receiving a one-time $50 donation from a Smith Corporation employee, we would receive $100, thanks to the employee and Smith Corporation.
Last year, we received 633 matching gifts, which helped us raise $36,923 from 51 matching gift companies. We’ve set a goal of raising $45,000 from these programs in 2024. If we meet our goal, we can expand our efforts to create the healthiest generations of children.
Please help us reach this objective by checking out your employer’s matching gift program. You can immediately assess your eligibility for the program and access detailed information about your employer’s initiative by searching our database of companies with matching gift programs at secure.qgiv.com/event/nmaglp/page/matchinggifts.
Thank you!
We hope you have enjoyed the significant changes found in this issue of In the Loop! We are introducing a new design that is better, bolder and more readily available to our donors, future donors, grateful patient families, friends and community partners.
This issue includes larger photos, visuals and eyecatching designs but that’s not all. Being mindful of waste and resources, we’re limiting the number of issues we print and mail. Readers have reported that they would prefer to read our newsletter online.
Please visit issuu.com. Once you’re there, please search Nemours Childrens Health to enjoy a digital, downloadable flipbook version of In the Loop. A big plus is that this and future versions will be shareable, so we hope you’ll let your social networks know about the fantastic work being done by Nemours Children’s Health.
As you know, we’re working well beyond medicine to create the healthiest generations of children and improve the lives of kids everywhere.