You're the Difference 2021 by Children's Hospital Colorado Foundation

You’re the Difference Children’s Hospital Colorado is fueled by generous donors like you. Learn how you make a tremendous difference for kids.

Belle

Children’s Hospital Colorado patient

CONTENTS

Fueling Breakthroughs A science lover donates to research

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Awards & Recognitions

Giving Families Hope Foundation funds groundbreaking leukemia research

Helping Kids to Cope Anonymous donor improves palliative care services

Voices of Gratitude The human impact of philanthropy

Going to Bat for Kids MLB gift supports services for local families

Trailblazing Research New endowment drives cures for IBD

Growing Pains Program eases the transition to adult care

COVID-19 Response Recap Donors support major relief efforts

If the past year taught us nothing else, it demonstrated that we are stronger together. Together we can keep each other safe and build a healthier future for the children of our region. Through a shared commitment, Children’s Hospital Colorado’s leaders and caregivers, our broader community and donors like you come together each year to advance new treatments, improve clinical care, propel research discovery and make the world better for the kids and families we serve. As Margaret Mead once said, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” So, it is with pride that we share with you stories of the difference that some of our committed citizens, corporations and foundations are making possible at Children’s Colorado through their philanthropy. As donors, you understand the why of supporting Children’s Colorado; these are a few examples of the who and the how. Philanthropy is imperative to accelerating — and achieving — our success. Thank you for having the belief and confidence that we can drive and, ultimately, achieve our shared vision of a healthier future for kids. We are humbled by and grateful for your faith in Children’s Colorado. We appreciate the trust you place in us, and we promise to keep affirming that trust every day. With gratitude,

Jennifer Roe Darling President and CEO, Children’s Hospital Colorado Foundation

Mike Asher Chair, Children’s Hospital Colorado Foundation Board of Trustees

ACKNOWLEDGMENTS You’re the Difference is a publication of Children’s Hospital Colorado Foundation, a nonprofit organization dedicated solely to advancing the mission of Children’s Hospital Colorado. Financial and other information about Children’s Hospital Colorado Foundation’s purpose, programs and activities can be obtained by contacting 720-777-1700 or info@childrenscoloradofoundation.org. For a complete list of state disclosure requirements, visit www.SupportChildrensColorado.org/disclosures. To opt out of mailings from Children’s Hospital Colorado Foundation, please call 720-777-1700. Note: Several images in this publication were taken prior to COIVD-19 restrictions.

‘You Can’t Take it With You’ The inspiration behind one donor’s major gift to child health research Trained as a geologist, Elliott Simonberg has a keen appreciation for history and science. He is interested in how different landscapes developed over time, in architecture and in the genealogy of his Polish family. But Simonberg is also interested in what lies ahead: his next international destination and the impact he can make for future generations through philanthropy. Simonberg never married and has no children. “People might ask why,” he says of his planned gift to Children’s Hospital Colorado. “It’s because children are young! And they deserve a good start in life.” A native New Yorker, Simonberg came to Denver in the early 1980s after a stint in Chicago. He worked in the oil and gas business, riding out the boomand-bust cycles that are typical of the industry. When his employer closed its Denver office, Simonberg decided that his career had run its course. He focused instead on investing, which gave him the flexibility to pursue his love of travel. “I built up a nest egg, and I am personally financially comfortable, so I can give through philanthropy,” he says. A friend who is a part-time speech therapist at Children’s Colorado introduced Simonberg to some of her colleagues and invited him to a couple of hospital events. “I was so impressed with the people,” Simonberg says. “They were smart and really proud of where they worked, which is not that common.”

YOU’RE THE DIFFERENCE

Elliott Simonberg, a world traveler and generous donor to Children’s Colorado

In the past, Simonberg gave small donations to many good causes but has changed his thinking more recently in favor of making one or two larger gifts that can make a more significant impact. With that philosophy in mind, he recently established an endowed fund to support child health research at Children’s Colorado, which will be funded by a testamentary bequest in his will, as well as annual donations. Exactly what type of research his fund supports will be determined by the leadership at Children’s Colorado because, Simonberg says, “I don’t want to guess where it will be needed most. I want Children’s to make that decision.” A second bequest will go to the Children’s Fund to meet the hospital’s greatest needs. Over the years, Simonberg has visited almost 100 countries and traveled to both Antarctica and the arctic circle. He keeps a map on his living room wall studded with pins identifying all his past travel destinations. “I feel very satisfied about this gift. I won’t say I’ve been selfish, but I have mostly thought about myself. Now I want to put my money where my mouth is,” he says. “Because, as they say, ‘You can’t take it with you.’”

Children’s Hospital Colorado Ranked Among the Very Best

BRAGGING RIGHTS We don’t like to brag, so we will let our awards do the talking.

The numbers are in and, once again, Children’s Hospital Colorado was ranked among the best pediatric hospitals in the nation. According to the 2021–22 Best Children’s Hospitals Honor Roll by U.S. News & World Report, Children’s Colorado earned the No. 6 spot among all children’s hospitals nationwide. It was also ranked the No. 1 pediatric hospital in the state and region. In addition, Children’s Colorado received high marks in all 10 ranked specialties. Seven of our specialties were ranked among the top 10 nationwide, including Gastroenterology and Gastrointestinal Surgery (No. 1), Diabetes and Endocrinology (No. 4), Pulmonology and Lung Surgery (No. 5), Cardiology and Heart Surgery (No. 6), Urology (No. 6), Cancer (No. 9) and Neurology and Neurosurgery (No. 10).

More than 90 Children’s Colorado physicians made the 5280 Top Docs list in 2020

Children’s Colorado is the only nationally ranked pediatric hospital in the surrounding 12 states. “It’s a truly incredible achievement, and none of it would be possible without our teams’ tireless dedication and consistency, day in, day out, year over year,” said Jena Hausmann, president and CEO of Children’s Colorado and the Cille B. and Ronald W. Williams Endowed Chair in Executive Leadership.

We received the highest recognition for excellence in nursing four times in a row

The U.S. News & World Report rankings are the most comprehensive source of quality-related information on American pediatric hospitals available. Hospital rankings are based on patient outcomes, clinical data and a survey of pediatric specialists from across the country. Thanks to our donors’ generous support, Children’s Colorado is able to provide world-class care and the best possible health outcomes to every child who needs us. “I could not be more proud,” said Hausmann.

The College of Healthcare Information Management Executives recognized Children’s Colorado with a Performance Excellence Award for cutting-edge technology

Research Holds the Key to New Cures One mom’s mission to advance leukemia breakthroughs in honor of her son Fourteen-year-old Will Maniatis hadn’t felt “right” for several weeks before he and his family received the devastating news that he had Acute Myeloid Leukemia (AML). Despite two aggressive rounds of chemotherapy, participation in a clinical trial for an alternate therapy and a bone marrow transplant, Will died in February of 2020.

Although many advances have been made in the treatment of Acute Lymphocytic Leukemia (ALL), the most common form of childhood cancer, therapies for pediatric AML have not changed much since the 1990s. Chemotherapy for AML is intense, often causing serious infections or even heart failure, and the treatment is not sufficiently effective. For every 10 children diagnosed with AML, only about six are cured long-term. The rest will have disease that persists despite therapy or will suffer relapse after initially responding to therapy. Maniatis describes Will as very “hands on” and involved with his treatment. “When he learned that his cancer was terminal, the first thing he said was, ‘Kids like me deserve more attention and better treatment options.’ It was Will’s wish that inspired me to launch the WillStrong Cancer Foundation to support researchers who are working on advancements in the lab right now,” says Maniatis.

Will Maniatis, center, with older brothers Stathi and Jack, two months before he died.

“They threw everything at him that they knew of,” says Will’s mom, Claudia Maniatis, of his caregivers at Children’s Hospital Colorado. “They consulted with the top AML doctors across the country but there were no other options. He was a healthy kid, but Will died 14 months after he was diagnosed because of a lack of research.”

The foundation made its first gift in 2020 to support the work of Amanda Winters, MD/PhD, who specializes in treating leukemias, lymphomas and pre-cancerous bone marrow diseases at the Children’s Colorado Center for Cancer and Blood Disorders. Through her research, Dr. Winters is trying to develop better methods for detecting lowlevel AML disease to pre-emptively treat patients at high risk of relapsing. She is also pursuing more targeted pediatric AML therapies that, unlike chemo, will eradicate the leukemia cells while sparing healthy organs and tissues.

With support from WillStrong, Children’s Colorado was able to purchase a digital polymerase chain reaction (PCR) machine for Dr. Winters’ research. A PCR machine can rapidly make millions of copies of a single DNA sample, so that researchers can study cells more closely and monitor disease more effectively. With this new instrument, Dr. Winters and her colleagues can more quickly perform new tests to differentiate leukemia cells from normal cells.

YOU’RE THE DIFFERENCE

“ We would not have been able to acquire this instrument without funding from WillStrong,” says Dr. Amanda Winters of the new digital DNA amplifier that is helping to advance her groundbreaking research.

“Much of the work researchers do is based on cell lines from patients from decades ago that have been propagated over and over again,” explains Dr. Winters. “That’s a starting point, but those cells don’t retain all of the biology of the original disease, so it’s not as accurate as studying primary patient samples.” Dr. Amanda Winters

“The capabilities that we have in the clinic are good, but our ability to change or adjust therapy is only as good as the technology we have available,” says Dr. Winters. “This emerging technology allows for more sensitive detection of disease and will help us to identify patients who are at risk of relapse, so that we can intervene before they actually relapse clinically.”

Funding Supports Better Treatment Options Because medial research requires a ready supply of tissue samples, WillStrong recently made a three-year commitment for equipment and salary support for a lab technician to work in the “biobank” at the Center for Cancer and Blood Disorders. The biobank contains solid tumor, blood and bone marrow cells from patients who have consented to have their samples stored and used for future research purposes. Having “fresh” samples to study is important because it allows researchers to study cancer and other diseases in their most relevant form — and see how unique cells respond to emerging therapies.

Currently, the biobank contains about 100 ALL and 50 AML samples, so Dr. Winters and other researchers will now have the material they need to explore new ideas for treatment for many years. WillStrong also supports the hospital’s participation in a multi-institutional clinical trial to test the effectiveness of a new drug combination — venetoclax and azacytidine — in treating myelodysplastic syndrome (MDS), a pre-AML type of bone marrow disease. “The combination of these two drugs has shown a great deal of promise in treating adult AML,” says Dr. Winters. “Now we want to study this drug regimen more in-depth with pediatric patients — not those with relapsed or refractory disease, but as a first-line therapy. This way, we can better understand how the drugs work and try to predict when and for whom they will or won’t be effective, so we can develop more targeted treatments.” “Research like this could hold the key to unlocking novel therapies,” concludes Maniatis. “Ultimately, that’s what we all want: we want to give these kids a fighting chance.”

“ Ultimately, we want to give these kids a fighting chance.” Claudia Maniatis, founder of the WillStrong Cancer Foundation

Generous Gift is Taking Palliative Care to New Heights Parenting a child with a complex medical condition isn’t easy — in fact it can feel downright unbearable at times. But with the help of an anonymous donor’s gift, Children’s Hospital Colorado’s Palliative Care program is helping more patient families manage the pain and struggles of a life-limiting illness. “Palliative care encompasses many different domains,” says Brian Greffe, MD, a pediatric oncologist who holds the Tanner and Ellie Seebaum Endowed Chair for Palliative Care at Children’s Colorado. “Our program not only helps with the physical piece — pain and symptom management — but also with the spiritual, the psychosocial, the emotional needs. All of those elements play a role in supporting quality of life, and we tailor them according to what each family needs.” The Children’s Colorado Palliative Care program offers comprehensive support from a Dr. Brian Greffe team of medical caregivers, mental health providers, social workers and care coordinators. The group partners with chaplains, art therapists, specialists and, when needed, hospice care to assist families with medical decision-making while addressing both mental and physical health needs.

Tremendous Growth, Tremendous Need Over the past five years, the Children’s Colorado Palliative Care program has seen an explosion in demand for services — growing from around 5-6 monthly consultations to serving nearly 40 families every month. The program is staffed by a highly dedicated and experienced team. But as patient volume has grown, Children’s Colorado has lagged behind other peer hospitals in terms of the program’s size, scope and care integration. Recognizing the critical importance of these services and the need for funding, a patient family recently made an anonymous donation of $1 million toward palliative care at Children’s Colorado. This family has first-hand experience with an unexpected diagnosis and its many ensuing struggles, and they wanted to make the path easier for others facing a life-altering medical condition. Thanks to this generous family, the Children’s Colorado Palliative Care program will soon become its own stand-alone department with a designated section head to spearhead the program’s development and facilitate full integration of its services across the hospital’s entire continuum of care. “This gift will help us to integrate Palliative Care services into every aspect of a child’s care,” says Dr. Greffe. “It means we can give more families the tools and resources they need to cope and support their child in the best way possible — and maybe even celebrate moments of joy along the way.”

YOU’RE THE DIFFERENCE

VOICES of Gratitude On behalf of our patients, families, caregivers and team, thank you for your support of Children’s Hospital Colorado!

I can’t put into words what Children’s Hospital Colorado means to me. I wouldn’t be here without them. They are lifesavers and miracle workers.” – LaShawn, organ transplant recipient and Children’s Colorado patient

Philanthropy is at the heart of so much of we do at Children’s Colorado. It connects us to our purpose, to our patients and to our community. The generous support of our donors enables us to accomplish dreams and reimagine child health.” – Jena Hausmann, President and CEO, Children’s Hospital Colorado, Cille B. and Ronald W. Williams Endowed Chair in Executive Leadership

Philanthropic support for child health research is critical for filling funding gaps. It allows investigators to carry out vital research projects and pursue highrisk, high-reward studies that have the potential to impact children across their entire lifespan.” – Shelley Miyamoto, MD, Jack Cooper Millisor Chair in Pediatric Heart Disease and director of the Children’s Hospital Colorado Cardiomyopathy Program

Thank you is not enough to describe how we feel about Children’s Hospital Colorado, the people who work there and those who support their work. They are all true angels.” – Brian, father of Paige, a Children’s Colorado Neuroscience Institute patient

Going to Bat for LoCal Kids Major League Baseball and Colorado Rockies step up to the plate to help area families Denver was selected as the host city for the 2021 Major League Baseball (MLB) All-Star Game. In every city where the Midsummer Classic is played, MLB supports local community enrichment projects through its All-Star Legacy initiative. Among the initiatives MLB chose to support locally is Children’s Hospital Colorado’s Resource Connect center, located at the Child Health Pavilion in Aurora, Colo. Resource Connect is an onsite hub that connects patients and families with community-based services to meet non-medical health needs, such as legal assistance, benefits enrollment into programs like Medicaid, utility assistance, and supplemental nutrition for women and young children through the federal WIC program.

Representatives from MLB present Children’s Colorado with a check during the August 2021 All-Star Game festivities

“We recognize that only 20 percent of a child’s overall health is impacted by clinical care, while the remaining 80 percent of kids’ well-being depends on other factors known as “social determinants” — home dynamics, food security, income level, educational attainment and other factors that can positively or negatively impact a child,” says Annie Lee, executive director of the Children’s Colorado Child Health Advocacy Institute. “Resource Connect is our way of helping to address some of the non-medical issues that may keep children from enjoying full health and well-being.”

Resource Connect will use All-Star Legacy funding to support staff members who work with patient families and strengthen community partnerships that remove barriers, making it easier for families in need to access social services. Launched in October 2019, more than 2,000 families were either referred to Resource Connect or asked for assistance connecting to community services during the first year of operations. Among the families referred to Resource Connect, nearly 80 percent successfully connected with and received the help they needed from one or more Resource Connect partners.

YOU’RE THE DIFFERENCE

The opening of Resource Connect just before the pandemic struck could not have been more prescient, as COVID is having a disproportionate impact on the health and wellness of low-income families, communities of color and other underserved populations, including families that use Children’s Colorado for primary care services. Many of these families were already experiencing financial hardship, food insecurity, unstable housing or homelessness prior to the onset of COVID. As a result, referrals to Resource Connect more than doubled in just the first few months of the pandemic. Further, Children’s Colorado staff noticed that most families who were referred to Resource Connect during the pandemic used offerings from two or more partner agencies, demonstrating the increased need for comprehensive services. Jim Kellogg of the Colorado Rockies helped to introduce MLB to Children’s Colorado and its programs and services. Kellogg has chaired the Children’s Hospital Colorado Foundation’s Corporate Leadership Council (CLC) since its inception in 2012. Members of the council act as ambassadors in the business community and encourage philanthropic giving to Children’s Colorado by local and national corporations. “Children’s Colorado encourages families to come in for wellness checks for their kids and then talks with the parents to see how they are doing with their life needs in order to connect them with resources to help them overcome those obstacles, says Kellogg. “This keeps both kids and families healthy. Children’s Colorado is a great fit for the All-Star Legacy program and its mission.”

Endowment Helps a Trailblazing Physician-Scientist Uncover New IBD Therapies Kids with Inflammatory Bowel Disease (IBD) face a tough road, but they’re not alone on their journey. Edwin de Zoeten, MD/PhD, backed by his team of expert clinicians and researchers at Children’s Hospital Colorado, is relentless in his pursuit of a better path for these patients.

Dr. Edwin de Zoeten

IBD is a chronic inflammatory disease of the digestive track and includes conditions like Crohn’s disease and ulcerative colitis. The symptoms can be debilitating, and prolonged inflammation can permanently damage the digestive tract. Dr. de Zoeten, co-director of the Pediatric Inflammatory Bowel Disease Center at Children’s Colorado, is a physician-scientist. He spends about 25 percent of his time providing patient care and the rest in his lab on the Anschutz Medical Campus researching new IBD therapies. Much of his research is focused on precision medicine, which looks at genetic and environmental factors to find more effective treatments that are tailored to each unique patient. Another promising area of his research focuses on a protein found in breast milk called lactoferrin. “It seems to have the ability to calm the immune system and may decrease the hyperactivity of gut inflammation we see in IBD,” Dr. de Zoeten says.

Fueling the Next Breakthrough Success in bench to bedside research is one of the reasons why U.S. News & World Report recognized the Children’s Colorado gastroenterology program as No. 1 in the country. It was also what led Denver philanthropists David and Suzanne Hoover to make a significant investment in the program. “We heard about what Ed was doing in the lab and wanted to help improve the care and quality of life for children with serious digestive issues,” says Mr. Hoover, who chairs the Children’s Colorado Board of Directors.

David Hoover

In December 2020, the Hoover Family Endowed Chair for Digestive Health and Nutrition was established, with Dr. de Zoeten named as the inaugural chairholder. An endowed chair is one of the highest honors a clinician or scientist can receive.

The Hoover family’s endowment will provide a permanent source of funding for Dr. de Zoeten’s groundbreaking research, helping his team to overcome funding barriers and develop life-changing new therapies for kids with digestive diseases. “We have so many clinical questions that come up, but we often have to prioritize the questions that have the greatest chance to get funded,” explains Dr. de Zoeten. “This endowed chair gives us some breathing room, so that every time one of our providers has a question, we can rapidly activate research to help answer it.” The more answers they find, the closer they will get to a cure for IBD. “I think about all the kids that this research will help,” Dr. de Zoeten says. “It’s exhilarating.”

YOU’RE THE DIFFERENCE

Growing Pains Novel program seeks to ease the transition from pediatric to adult care Transitioning from adolescence to adulthood can be difficult, but it is even more challenging for young people with complex medical conditions. Moving from pediatric to adult care means leaving a health care system designed for children and entering an adult system that expects patients to be independent and offers less support. The transition can be challenging, and many patients experience a disruption in care, a worsening of their condition or more frequent emergency room visits. Take a young person who has had an organ transplant, for example. “If you stop taking your anti-rejection meds, you may be at risk of losing your organ,” says Jennifer A. Disabato, DNP, a nurse practitioner at Children’s Hospital Colorado. “If pediatric patients don’t make a successful transition to adult care, it can be dangerous.” Making that transition smoother has long been a priority of the American Academy of Pediatrics and other physician groups, but there are few successful models to emulate. With philanthropic support from the COPIC Medical Foundation, Dr. Disabato and her colleague Bill Anderson, MD, intend to change that. Together, Dr. Disabato and Dr. Anderson are leading development of the Improving Pediatric to Adult Care Transition (ImPACT) Navigation Hub at Children’s Colorado. Staffed by a nurse care coordinator, social worker, healthcare navigator and other support personnel, the ImPACT Navigation Hub will be a best-practice resource, working with physicians, patients and families to identify obstacles and ease the transition as young adult patients with pre-existing conditions move from pediatric to adult care.

“The ultimate goal of this effort is education and the development of selfadvocacy,” says Dr. Anderson. “We want to think about what we are doing in pediatrics that will set patients up for success for the rest of their lives. A successful transition is key to lifetime health.” It is this focus on improving health outcomes that won support from the COPIC Medical Foundation, the philanthropic arm of the medical liability insurance provider. Children’s Colorado’s was one of only five projects the foundation chose to fund in 2021.

Dr. Bill Anderson

“Children’s Hospital Colorado’s proposal was comprehensive and well thought out,” says Meredith Hintze, executive director of COPIC’s foundation. “We think this idea is innovative, replicable and scalable to other health care systems, which satisfies our mission to improve patient safety.” Still in the development stage, Dr. Disabato and Dr. Anderson hope to see the ImPACT Navigation Hub up and running by late fall 2021. Because, as Disabato says, “we aren’t finishing our job in pediatrics if we don’t help our patients make a smooth transition to adult care.”

On the Frontlines of COVID-19 With donor support, Children’s Hospital Colorado mounts major pandemic response effort The COVID-19 pandemic created unprecedented challenges, but the generosity of our community was equally as unprecedented. Throughout a very difficult year, philanthropy enabled Children’s Hospital Colorado to continue caring for the kids who need us, while offering frontline and behind-the-scenes support to the region’s caregivers and communities. Here are a few of the ways that donor support of our COVID-19 relief efforts made a tremendous difference in 2020.

$3.4M

50,000+

Donations to Children’s Hospital Colorado’s COVID-19 Emergency Relief Fund

People received the COVID-19 vaccine at Children’s Colorado as of July 2021

7,000+

Pieces of personal protective equipment that Children’s Colorado distributed to medical practices across the state

ONLY

Site in the region to host a clinical trial for the Pfizer-BioNTech COVID-19 vaccine in children

14,481

$7.5M

People served by our food pantry, which provided more than 626,000 pounds of groceries to families facing food insecurity

Dollars invested into our Pediatric Mental Health Institute to provide critical treatment services, facilities and resources for kids in crisis

118,267

128,125

COVID-19 tests administered and processed through the Children’s Colorado Mobile Testing Center on the Anschutz Medical Campus

Number of COVID-19 research collaborations underway, including studies on how COVID-19 and the related multisystem inflammatory syndrome (MIS-C) affect children

YOU’RE THE DIFFERENCE

Telehealth appointments conducted in 2020, a 2,300%+ increase over 2019

Thank you

for bringing health, hope and healing to the kids and families we serve. We are so grateful for your support!

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