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SUMMER 2018

BUILDING BRIGHTER FUTURES

The sky’s the limit for brain tumor survivor Sophia.

INSIDE Your dollars at work, Page 2 Creative arts therapy heals mind, body and soul, Page 11 From North to South, we’re expanding to reach more kids, Page 16


INSIDE Through collaborative research, Dr. Todd Hankinson is building a better future for kids battling brain tumors. Page 6

2 Campaign Impact Report

How donors to the Courage is… Campaign are transforming children’s health

10 Why I Give

Joan Slaughter, founder of The Morgan Adams Foundation, shares her story

Today, more than ever before, our mission of giving children healthy futures is within reach. With your help, Children’s Hospital Colorado is poised to transform the future of pediatric medicine. Will you join us? courageis.org

11 Art That Heals

Philanthropy-funded creative arts therapy program helps patients to cope

14 Voices of Courage

Courage is… Campaign Co-Chairs

Patients describe their most memorable moments at Children’s Hospital Colorado

16 Care Closer to Home

Children’s Hospital Colorado is expanding to reach more kids across the region

Laura Barton

Barth and Maureen Whitham

Cille and Ron Williams

18 Innovations at Work

Center for Innovation brings new technologies to the front lines of pediatric care

ACKNOWLEDGMENTS The Courage is... magazine is a biannual publication of Children’s Hospital Colorado Foundation, a nonprofit organization dedicated solely to advancing the mission of Children’s Hospital Colorado. Editors: Megan Lane, Michele Murray Contributors: Madeline Schroeder, Erin Bodine • Design by Straightline Design 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.childrenscoloradofoundation.org/disclosures. To opt out of mailings from Children’s Hospital Colorado Foundation, please call 720-777-1700.


Children’s Hospital Colorado

IN THE NEWS

Young Artist Raises $20,000 for NICU Adelyn Wall was only 7 years old when she started selling original artwork to raise money for Children’s Hospital Colorado. Five years later, “Art By Adelyn” has raised $20,000 for the hospital’s Neonatal Intensive Care Unit (NICU). It’s a cause that’s particularly meaningful to Adelyn, who spent her first few weeks of life in the Children’s Colorado NICU. Today, she’s helping the hospital’s tiniest patients by selling notecards and stationary featuring her artwork at Denver-area retailers, including the Denver Art Museum. “It’s easy to help others,” she said. “Find something you love to do, then use it to help other people.”

Adelyn sells her artwork to help babies in the NICU.

Expanded Family Resource Center Provides Home Away from Home Children’s Hospital Colorado recently unveiled an expanded and remodeled Family Resource Center on the Anschutz Medical Campus. This updated respite space provides a home away from home for parents and guardians while their child is in the hospital. Within the Family Resource Center, families can relax and recharge in a home-like space just for them. The Center includes a reception area, business center, kitchen and dining area, laundry facilities and a relaxation room. The expansion added six new sleeping rooms, so more families can reserve private rooms with the amenities of home. The space is offered to patient families free-of-charge, thanks to support from donors.

With Donor Support, Children’s Colorado Opens New Allergy Center Children’s Hospital Colorado recently opened a state-of-the-art Allergy and Immunology Center — one of the largest of its kind in the nation. The 11,350square-foot space is dedicated to treating children and young adults with food, drug and environmental allergies, as well as patients with asthma and immunologic diseases. The Allergy and Immunology Center is led by nationally renowned doctors and researchers who are on the forefront of new methods of allergy testing and are paving the way to identify innovative new treatments. Generous donors made the new Center possible, including a $1 million gift from Mr. and Mrs. John E. Freyer and their entire family to advance care and research for children suffering from allergies.

Mighty Millions Raffle Makes a Mighty Difference for Kids Thousands of people recently learned that they are winners of the 2018 Children’s Hospital Colorado Mighty Millions Raffle. At the final drawing on May 17, the Raffle awarded $4.56 million in prizes, including luxury vehicles, exotic vacations, and the grand prize: a $2.4 million, fully-furnished Denver dream home. Proceeds from the Mighty Millions Raffle support the hospital’s greatest needs, allowing us to further our mission of caring for children and families. For more information, visit MightyMillionsRaffle.com.

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YOUR SUPPORT IN ACTION


IMPACT REPORT Our heroes don’t wear capes. For us, they are the 165,000+ donors who have made a gift to Courage is… The Campaign to Transform Children’s Health. From kids bringing in piggy banks to donors who established multi-million dollar endowments, our supporters make a difference every day at Children’s Hospital Colorado, in ways both big and small.

“Philanthropy is at the heart of so much that we do at Children’s Colorado. Our generous donors enable us to heal more children today, while reimagining the future of child health through research and innovation.”

We are incredibly grateful for donors like you who have supported our life-changing mission. Your gifts have fueled groundbreaking research that is generating new treatments, cures and hope for children facing debilitating diseases. You have enabled Children’s Colorado to expand services across the region, giving thousands of children unprecedented access to expert pediatric care. Your generosity has strengthened our clinical programs, allowing us to recruit the best and the brightest so we can deliver some of the best health outcomes in the country. Your donations have also enabled us to provide critical support services for families facing difficult diagnoses. Whether it is funding a grief counselor, an art therapy session or a warm blanket for a premature baby, you have made the unbearable just a little bit easier for countless parents and children.

JEN DARLING President, Children's Hospital Colorado Foundation

We launched this historic Campaign with a bold vision to transform children’s health. Today, we’re proud to report on our Campaign progress and share the ways that your dollars are making an impact at Children’s Colorado. Continued on page 4

Help Us Build a Better Future

GENEROSITY BY THE NUMBERS From Campaign launch through 4/30/18

• $355

million raised toward $400 million goal • 165,745 total donors • 25 new Endowed Chairs ($2 million+ each) • 2,322 Campaign gifts of $10,000 or more

As we embark on the final months of the Campaign, we invite you to help us write the next chapter of health and hope. Visit courageis.org for more information.

2017 HEALING HIGHLIGHTS 233,000+ patients treated

215

high-risk babies delivered at the Colorado Fetal Care Center

400+

ongoing clinical trials for cancer and blood disorders

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master’s level creative arts therapists on staff

Top 10%

for heart surgery outcomes

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IMPACT REPORT How does your support make a difference at Children’s Hospital Colorado? Here are just a few examples of the ways that donors are transforming lives. Seeking Treatments Beyond Chemo In recent decades, survival rates for the most common form of pediatric cancer, acute lymphoblastic leukemia, have jumped to nearly 90 percent. Yet some children fail to respond to traditional treatments and continue to relapse. With the help of philanthropy, physicianscientist Terry Fry, MD, is changing the future for children with resistant cancers. Dr. Fry is one of the leading cancer researchers in the country, and he recently joined the Children’s Colorado team as the Director of Cancer Immunotherapy on the Anschutz Medical Campus and the Robert J. and Kathleen Dr. Terry Fry A. Clark Endowed Chair for Pediatric Cancer Therapeutics. His groundbreaking research aims to super-charge the body’s cancer-fighting T-cells. “The opportunity to recruit Dr. Fry here is truly amazing,” said Lia Gore, MD, Director of the Center for Cancer and Blood Disorders at Children’s Colorado and the Ergen Family Chair in Pediatric Cancer. “We are fortunate that he chose to come here over the many other leading institutions in the country who wanted him. It shows the future is bright here.” Dr. Fry was among the first scientists to investigate inserting modified genes into a child’s own T-cells, making them better-equipped to seek out and kill leukemia cells. Approved by the Federal Drug Administration (FDA) for pediatric use in 2017, the therapy achieved an astonishing 80 percent remission rate in kids with unresponsive leukemia. Now Dr. Fry is working on a therapy that targets two proteins found on the surface of leukemia cells. The goal: decrease cancer resistance and strengthen remissions. Dr. Fry believes his research could have implications for other diseases. “Treatment for autoimmune diseases involves manipulating the same cells we’re studying,” says Dr. Fry. “This absolutely has potential beyond cancer.”

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A Welcome Distraction During Difficult Procedures After Markus was diagnosed with a rare form of bone cancer, doctors at Children’s Colorado had to remove his leg at the knee. He then had to undergo months of chemotherapy treatment. Markus came to dread his infusion appointments, which made him feel very sick. His anxiety about chemo got so bad that he used to get nauseous just by walking through the hospital’s doors. Then Markus’ family discovered Child Life, a program that helps kids to cope during their time at the hospital. Thanks to a gift from Child’s Play charity, Children’s Colorado recently became the first children’s hospital to employ a full-time technology and gaming specialist, Mike Kundrat. Mike uses innovative video games and virtual reality platforms to distract and entertain patients during difficult procedures. To ease Markus’ fears, Mike gave him virtual reality glasses during his infusions. The glasses kept Markus’ Markus used virtual reality glasses to get through chemo. mind off the chemo by “transporting” him to places beyond the walls of the hospital. “It made a world of difference for him,” said Markus’ mom. Today, Children’s Colorado is conducting research on the effectiveness of gaming therapies in mitigating pain and improving health outcomes. These services are not covered by health insurance, but because of donor support, Children’s Colorado provides them for free, so more kids can feel at ease during their hospital stays.


This room provides a home-like space for NICU families facing difficult diagnoses.

A Respite for NICU Families Last year, nurses in the Neonatal Intensive Care Unit (NICU) helped to create a palliative care room where families can bond with their babies for as long as they need. The palliative care team offers an emotional, spiritual and psychological support team for families with difficult diagnoses, including those whose children are terminally ill. Because of donor support, these NICU families now have a more home-like setting where they can talk through difficult decisions and make precious memories with their babies. With a queen-size bed, a privacy screen and comfortable furniture, the room offers a homey space that feels far removed from the clinical setting. A tribute gift in honor of Nan Klein, a longtime NICU nurse, funded special nature-themed artwork for the room to help families feel at peace during times of crisis.

“Children’s Hospital Colorado is doing incredible work to heal kids today, and I love how we’re also working to keep kids healthy in the future. I support the Prevention and Wellness Fund, which does groundbreaking work to prevent childhood illness and injury. How many hospitals do you know that are working to keep people from ever needing their services? It’s inspiring to know that my gift supports healthier generations of children.” LAURA BARTON

Multidisciplinary Clinic Transforms Care for Kids At Children’s Colorado, we do more than get the best providers under one roof. We get them all in one room, working directly with families at the Multidisciplinary Clinic to carefully coordinate each child’s care. Our Multidisciplinary Clinic is an innovative space that allows teams from a range of specialties to provide coordinated care for children with complex needs. With 24,000 square feet of dedicated space, the Clinic is the largest of its kind nationwide, and it was funded in part by donors, including a $100,000 gift from corporate partner Alliance Data. Everything about the Multidisciplinary Clinic is Care teams come together to treat designed with families in mind. medically complex kids. Because its patients need to see multiple providers, the Clinic has extra-large exam rooms where multiple care teams can collaborate and discuss treatment. There’s also a family lounge and three customdesigned play areas to keep patients and siblings entertained during what can be a long day of appointments. In addition to enhancing care coordination, the Clinic also helps families to schedule multiple appointments in one day so they can avoid multiple trips to see individual specialists. By supporting the Multidisciplinary Clinic, donors are helping to optimize medical care, as well as patient comfort and convenience at Children’s Colorado.

Courage is…Campaign Co-Chair, Children’s Hospital Colorado Foundation Trustee, and Children’s Hospital Colorado Director

“We didn’t know if our son would be here today, but thanks to Children’s Hospital Colorado, he just celebrated his first birthday. Knowing that Children’s Colorado will be here for us when we need them brings us peace of mind and allows us to live life to the fullest with our family.” DEBBIE STEVENSON Mother of Children’s Colorado patient Eli, age 1

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Dr. Todd Hankinson removed Sophia's brain tumor. Now he's aiming to revolutionize therapies for kids with her condition.

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RESEARCH YIELDS HIGH REWARDS Donors Propel New Treatments for Kids with Brain Tumors

T

Dr. Todd Hankinson, left, in his research lab

he tumor went unnoticed at first, a sinister mass growing deep within Sophia’s brain. Then her mother started noticing that her bubbly little girl’s balance was off. A few weeks later, her vision became blurry. By the time Sophia had an MRI, it was clear that something was very wrong.

“They told us we needed to go to Children’s Hospital Colorado right away,” recalls Sophia’s mother, Paula. The next day, Sophia’s family drove six hours from their home in New Mexico to Children’s Colorado. There, Sophia was diagnosed with a rare brain tumor called craniopharyngioma. She was only 3 years old at the time. Although non-cancerous, craniopharyngioma tumors can be deadly. They tend to grow around the optic nerves and pituitary gland, often causing blindness, hormone imbalances and obesity, plus potential brain artery damage, memory problems and fluid build-up in the brain.

Sophia at age 3

Todd Hankinson, MD, a pediatric neurosurgeon at Children’s Colorado, removed most of Sophia’s tumor, but he had to leave some of the mass behind to protect critical brain structures, as is the case with most craniopharyngioma patients. “He described the tumor as a vine wound around her optic nerve and hypothalamus,” Paula says. Sophia’s family was terrified, but they soon learned they weren’t alone. In addition to a top care team, they also have an army of Children’s Colorado researchers, physician-scientists and donors working hard to give Sophia and children with her diagnosis a better future through research.

Hard to Treat, Harder to Study Not only is craniopharyngioma hard to treat, it’s also extremely difficult to study. The tumors are comprised of both solid and cystic components, and because of how they grow, it’s nearly impossible to culture tumor cells and test how they respond to various treatments. “Craniopharyngioma doesn’t have a lot of treatment options, and there haven’t been any new ones in many years,” Dr. Hankinson says. Continued on page 8

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Sophia shares a laugh with her parents at a recent check-up.

Working cooperatively with a group in London that developed the first animal model of the disease, Dr. Hankinson’s consortium is currently conducting several studies to identify patterns of gene expression and protein activity that might drive tumor growth. The group recently secured a five-year, $1.5 million grant to identify specific molecular targets that may be treatable in craniopharyngioma tumors. “Because craniopharyngioma is so rare, it’s not practical to design new drugs for it. Instead, we’re working to identify existing drugs that could work," Dr. Hankinson says.

In addition, it’s an extremely rare condition. In the United States, only about 120 children are diagnosed each year, which makes research funding hard to come by and leaves far too many families with a bleak prognosis. “With surgery and radiation, these patients typically have good survival rates,” says Dr. Hankinson. “But they can live with substantial problems for a really long time. One study showed they have the worst quality of life of any pediatric brain tumor.” That may soon change. Six years ago, Dr. Hankinson started a research consortium, Advancing Treatment for Pediatric Craniopharyngioma, a collaborative effort with 16 other pediatric institutions. Supported by funding from The Morgan Adams Foundation, along with generous donors including Betsy and Bryan Hendershot and Steven and Blanche Goldenberg, the team has made significant progress for children battling craniopharyngioma. “We’ve already made exciting discoveries about the biology of these tumors solely with philanthropic support,” Dr. Hankinson says. “With additional funding, we could completely revolutionize therapies for these kids.”

If any one of those drugs is effective — and several are showing promise — it would be the first-ever therapy to treat the underlying mechanisms of the disease. After testing the therapies in mice, Dr. Hankinson plans to conduct early stage clinical trials at Children’s Colorado. In additional to seeking new therapies, Dr. Hankinson is also spearheading research on new diagnostic techniques that could allow doctors to diagnose craniopharyngioma using imaging instead of brain surgery. “No one else is doing research like this,” Dr. Hankinson says. “We’re very fortunate to have generous donors who believe in our work and have provided the funding to make a difference for kids.”

Thinking Outside the Box Dr. Hankinson and his colleagues say that donors are the driving force behind their research efforts. “We’ve seen dramatic decreases in government research grants and other funding sources for research nationwide,” Dr. Hankinson says. “Private philanthropy has played a significant role in supporting the overall cost of our research.” This is particularly true for the trailblazing research projects that rely on donor funding to pursue radical new ideas.

Dr. Rajeev Vibhakar Shares What Drives Him to Seek New Cures “When I was doing my residency in 1999, I saw four kids with brain tumors on the same day. I remember they all had different types of brain tumors, but we were treating them the same, using the exact same drugs. I told the attending physician that this didn’t make a lot of sense, but she explained that it was the best option we had, unfortunately. I decided then and there to dedicate myself to finding out as much as I could about new therapies. “Since then, I have seen firsthand the difference we can make through research. I just got a card from a patient who I treated when she was 16, and now she is getting married. To me, that’s amazing. But I have also lost way too many patients. Every time I go to a funeral, I’m reminded that we have a lot more to do. That’s what drives me, because I know that the breakthroughs we make can change the outcomes for kids.” – Dr. Rajeev Vibhakar, MD/PhD, Director of the Children's Colorado Neuro-Oncology Program

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More Breakthroughs Fueled by Generosity Pediatric oncologist Dr. Jean Mulcahy Levy recently made a surprising discovery that’s giving new hope to patients whose brain tumors were once considered untreatable. With donor support, Dr. Mulcahy Levy’s research team discovered that brain tumors with a mutation called BRAFV600E use a process known as Dr. Jean Mulcahy Levy autophagy to survive against cancer drugs like chemo. Autophagy allows cancerous cells to reuse proteins for

energy when threatened, making them more resistant to treatment. Building on research from her colleagues, Dr. Mulcahy Levy hypothesized that an FDA-approved drug that’s used to treat malaria would block autophagy in these tumors, making them more responsive to treatment. She introduced the drug to a young patient with an aggressive brain tumor that had the BRAFV600E mutation. Doctors had already tried everything to no avail. Within weeks of starting the new therapy, the patient started getting better. “Miraculously, she had a response to the treatment,” said Dr. Mulcahy Levy. “We have now treated three patients

“Philanthropy is the foundation for all the research we do here,” says Rajeev Vibhakar, MD/PhD, Director of the Neuro-Oncology Program at Children’s Colorado. “It funds cutting-edge ideas that might sound like moonshots at first, but you have to look outside the box to make the next major breakthrough. That’s where donors make a big difference.” Dr. Vibhakar cites The Morgan Adams Foundation as a donor that has made a major difference by establishing The Morgan Adams Foundation Pediatric Brain Tumor Research Program at Children’s Colorado. “They were early supporters of the groundbreaking, higher-risk research projects that never would have received grants from the National Institutes of Health (NIH),” he says. “With their seed funding, we were able to conduct the initial experiments and generate data that has since resulted in more than $11 million in NIH funding. If it weren’t for The Morgan Adams Foundation and others, our program wouldn’t exist.” Dr. Vibhakar has seen firsthand the impact of research. For example, since he first started in the field 20 years ago, patient survival rates for medulloblastoma, the most common cancerous brain tumor in children, have increased from around 50 percent to 80 percent today. Yet there are many other types of pediatric brain tumors that are still incurable. Dr. Vibhakar and his team intend to change that. “That’s what drives me,” he says.

with this drug, and all three have had a clinical benefit.” Clinical trials are being planned at the Children’s Colorado Center for Cancer and Blood Disorders to validate whether the drug can be broadly effective in patients with these types of brain cancers. “It’s really exciting — sometimes you don’t see that kind of response with an experimental treatment,” she says.

The Sky’s the Limit As for Sophia, she completed radiation treatment two years ago and is now a happy, energetic 6-year-old. Her vision continues to be impacted – although not as severely – and she takes daily medication to keep her hormones in balance, another area that Dr. Hankinson hopes to improve through research. A small piece of the tumor remains in Sophia’s brain, but, according to Dr. Hankinson, you’d never know it. “Seeing her now, a few years out from her treatment, she’s just a fun, spunky kid,” he says. “It’s like she never had a brain tumor.” For Dr. Hankinson, success stories like Sophia’s are what inspire him to keep seeking new treatments and cures. “There’s almost nothing that Sophia won’t be able to do,” he says. “The sky’s the limit for her.”

YOU CAN HELP By donating to the Children’s Colorado Research Institute*, you support new treatments, therapies and cures that benefit kids here and around the world. Email info@childrenscoloradofoundation.org or call 720-777-1700 for more information. * If you are a Colorado resident, your gift to the Research Institute of $250 or more may qualify for the Enterprise Zone tax credit.

International Neuro-Oncology Symposium Coming to Colorado On June 29-July 3, Children’s Colorado and The Morgan Adams Foundation will be key sponsors of the 2018 International Symposium on Pediatric Neuro-Oncology, a global biennial meeting of medical professionals who research, diagnose and treat pediatric brain tumors. Children’s Colorado is honored to have been chosen by the international community to hold this seminal event and looks forward to showcasing our research and collaborating with others to advance new treatments for brain tumors.

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WHY I GIVE

The Morgan Adams Foundation Seeds Hope Just 4 percent of the National Cancer Institute’s research budget is allocated to pediatric cancer research. That’s why funding from partners like The Morgan Adams Foundation is so vital. Since its inception in 2000, this incredible organization has donated nearly $5 million to fund more than 150 pediatric cancer research projects through The Morgan Adams Foundation Pediatric Brain Tumor Research Program at Children’s Hospital Colorado. It has also funded many other research efforts nationwide. Many of these projects have led to new treatments that are improving quality of life and saving lives. Indeed, many children are alive today because of research funded by The Morgan Adams Foundation. Joan Slaughter, co-founder and executive director of The Morgan Adams Foundation, explains why she and her family have been supporting research at Children’s Colorado for nearly 20 years — and why she thinks it’s important for others to do the same.

Funding Research for Pediatric Brain Tumors By Joan Slaughter, Executive Director of The Morgan Adams Foundation

Joan Slaughter with a photograph of her late daughter, Morgan, in front of the research lab that her foundation helped to fund.

In 1997, my husband Steven Adams and I were raising two kids, enjoying a normal, happy existence. All that changed in an instant when we took our oldest daughter, 5-yearold Morgan, to the doctor with what we thought was the flu. We were beyond devastated to find out she had a brain tumor.

Eleven months later, after multiple brain surgeries, intensive chemotherapy, and radiation, we lost our sweet, brave girl. Steven and I wanted to do something to support the doctors who gave everything they had to help Morgan — and to help them find a way to save the lives of other children. We were shocked to learn how underfunded research for pediatric cancer is. While there are many great ways to help children fighting cancer, we knew our efforts needed to focus on research. We have made some progress with pediatric brain tumors:  In 1998, the year Morgan died, medulloblastoma tumors were 25 percent curable. Now they are 80 percent curable. We are proud to have played a role in changing that statistic for the better.

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 In 1998, if a child with an ependymoma tumor relapsed, their cancer was simply not curable. Now, thanks to a treatment pioneered at Children’s Colorado, nearly all kids with recurrent ependymomas have significantly better outcomes — and some are even cured. Yet much work remains:  In 1998, kids diagnosed with glioblastoma multiforme tumors — like Morgan’s — had only a 10 percent shot at survival. In 2018, that survival rate still hasn’t changed.  In 1998, kids diagnosed with diffuse intrinsic pontine glioma (DIPG) brain tumors had ZERO chance of survival. Twenty years later, that number hasn’t improved. There are far too many types of pediatric cancer for which we can offer very little hope. Children’s cancers are NOT the same as adult cancers. They need their own treatments. And their own research. Our supporters have enabled us to collectively build one of the best pediatric brain tumor research programs in the country at Children’s Colorado. This has been a difficult year for all of us at The Morgan Adams Foundation, with too many families losing their cancer warriors: Koby, Trevor, Cooper, Ryan, Kailey, Lisa, Josh, and Finn — these are just some of the kiddos we knew personally. For them, for Morgan, and for countless others, we press on.


Children's Colorado patient Annette holds a drawing she created through the Ponzio Creative Arts Therapy Program.

Creative Arts Heal Body, Mind and Soul Philanthropy-funded creative arts therapy program helps children process emotions and cope with painful experiences Sitting in the Children’s Hospital Colorado art therapy studio, 16-year-old Annette picks up a black pen and begins to draw.

Drawing by Children's Colorado patient Annette

Within minutes, she has transformed blank paper into an illustration of a man’s distorted head with protruding octopus tentacles. The style is distinctly her own, using a technique called pointillism to create shading and detail. The piece expresses what she feels at this moment: overwhelmed. For Annette, making art is one of the only ways she can tap into complicated thoughts and communicate painful emotions. Right now, she is battling several mental health conditions with the help of the Children’s Colorado Pediatric Mental Health Institute. She says this experience is the hardest thing she has ever been through, but she credits the Ponzio Creative Arts Therapy Program, which provides regular art therapy sessions, not only with giving her hope, but also saving her life. “Without art, it’s hard to cope,” says Annette. “This program, and the art we make through it, sustains us.” Continued on page 12

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Transformational gift makes art therapy possible For many Children’s Colorado patients, there’s a “before” and an “after.” Before they got cancer. Before they were severely burned. Before they experienced trauma. And then, their lives afterwards. After a difficult diagnosis or injury, children often need to create a new identity. They need to process what is happening to them and find language to describe their experience. Creative arts therapy can provide the medium to do just this. Founded in 2005, the Ponzio Creative Arts Therapy Program began with a transformative $2 million gift from Craig Ponzio, an Honorary Lifetime Director on the Board of Directors. He envisioned a day when every child treated at Children’s Colorado would have access to this life-changing — and, in cases like Annette’s, life-saving — therapy. Craig Ponzio established the Ponzio Creative Arts Therapy Program in 2005 with a transformative gift.

Creative arts therapy helps children cope with mental health issues by using different means of expression, including music, dance movement, yoga and art. Children’s Colorado is a national leader among children’s hospitals in the breadth of art therapies it offers, along with the holistic integration of the program into a child’s overall care plan. This approach ensures that patients’ physical and psychological needs are being met. And just as the hospital provides life-saving surgeries and treatments, creative arts

About the Ponzio Creative Arts Therapy Program The Ponzio Creative Arts Therapy Program at Children’s Colorado offers children and families a broad creative palette for the healing of the body, mind and spirit. Few other children’s hospitals in the country offer our breadth of expertise in creative interventions in a clinical setting, substantiated by ongoing research. Our master’s level creative arts therapists are an integral part of our patients’ treatment plans, working in tandem with psychiatrists, social workers, caregivers and counselors to help kids get better, faster. With seven creative arts therapists, three dedicated studios and two gallery spaces, the Ponzio Creative Arts Therapy Program conducts about 250 art therapy patient interactions every week. Through this unique program, kids and families experiencing illness, trauma and grief can express themselves, deal with pain and begin to heal.

THE PROGRAM PROVIDES FOUR TYPES OF THERAPIES:

MUSIC

DANCE

YOGA

ART

In music therapy, kids can choose from a number of activities, including singing, playing an instrument, and writing and recording songs.

Dance movement therapy uses the connection between the mind and body to promote health and healing.

Yoga therapy for children embraces the same theories as adult yoga, but with targeted, developmentally appropriate techniques, including breathing, relaxation, meditation and postures.

With art therapy, patients express themselves across a variety of mediums, ranging from painting and photography to sculpture and drawing.

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therapy also has the power to heal and transform children’s health. “Creative arts therapy can expand who kids think they are,” says Katherine Reed, LPC, art therapist and manager of the Ponzio Creative Arts Therapy Program. “They’re already raw and vulnerable after a medical challenge, and they are figuring out who they are becoming. In a situation where they don’t have a lot of control and many things are happening to them, creative arts therapy allows them to have choices - what color to use or what song to sing, to have a voice and to really express and understand themselves more fully. In turn, it also gives their families a chance to see their child in a different light.”

“Without art, it’s hard to cope. This program, and the art we make through it, sustains us.” ANNETTE 16-year-old patient who participates in art therapy at Children's Colorado

In the coming years, Children’s Colorado hopes to significantly expand its creative arts therapy program by adding therapists, serving patients in additional departments and offering its services across the hospital’s network of care. The expansion will only be possible with the support of generous donors, since much of the program’s funding comes from philanthropy. Mr. Ponzio’s continued investments, along with funds from the Courage Classic Bicycle Tour’s Ponzio Pedalers team, serve as a catalyst to inspire additional support to propel the program forward.

Building a new identity Tonight is the opening of Annette’s first-ever solo gallery exhibition, “My Mind in Ink,” a public showing of her art and poetry at Children’s Colorado. It’s the first time most of her family, friends, caregivers and fellow patients will see Annette’s creative side and celebrate her incredible abilities, even amidst the daily stressors of her hospitalizations. She is both excited and nervous for the show. But most of all, she’s starting to seeing herself in a new light. Art has become a language that has allowed her to process her feelings, reflect on her hidden struggles and discover a new identity beyond her diagnoses – that of a very talented artist. When asked what the Ponzio Creative Arts Therapy Program means to her and what she would say to its supporters, the wise-beyond-her-years teenager grows silent. Then, tears well up in her eyes. “It would be really worth it to donate any amount to this program,” she says. “It keeps the program alive. And so, in a way, it also keeps us alive.”

Katherine Reed, Manager of the Ponzio Creative Arts Therapy Program, at Annette's gallery exhibition

GIVE THE GIFT OF ART THERAPY Together, we can provide creative arts therapy services to every patient who needs them. To make a gift or learn more about the healing power of the arts at Children’s Colorado, call 720-777-1700 or visit childrenscoloradofoundation.org/donate.

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VOICES OF COURAGE We asked our 2018 Patient Ambassadors, “What was your most memorable experience at Children’s Hospital Colorado?”

Trinity

“Going to Burn Camp and being around other burn survivors was very memorable. For the first time since my accident, I knew that I wasn’t alone in the world.

– Trinity

Trinity, age 13, is a burn survivor who loves crafts and quilting.

“When the doctors helped me get my new kidney. I had to do dialysis for 12 years before I was matched with a donor, so that was a really big moment.”

- Adrian

Adrian, age 14, received a new kidney in 2017. He's a great student and writer.

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“My most memorable experience was Jaden’s first brain surgery. I hugged his neurosurgeon afterwards, and I remember being incredibly relieved and thankful for his skilled hands. He saved Jaden’s life that day.”

– Christina, Jaden’s mom J aden, age 7, suffered a stroke at birth resulting in hydrocephalus. He loves trains, camping and the Denver Broncos.

Jaden

“Once, when I was admitted to the hospital for an entire week, the Denver Broncos cheerleaders came to visit me. One of them gave me one of their pompoms!” – Alyssa

“My most memorable experience was just having fun with all the doctors. One of my doctors is also in a wheelchair. We’ve become friends, and we laugh a lot.”

- Maddy

Alyssa, age 14, was born with a rare urological birth defect. She is an aspiring fashion designer.

Alyssa

Maddy, age 11, has spina bifida. She enjoys dancing and doing cool tricks in her wheelchair.

Maddy

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Bringing Care Closer to Families It is a transformational time at Children’s Hospital Colorado.

As the need for expert pediatric health care increases across the region, so does the need for more facilities in more locations that are convenient for local families. With generous donations and community support, we are building a new hospital in Colorado Springs and expanding our North Campus location in Broomfield, Colo. When the doors open at these facilities, we will offer even more patients and families the best pediatric care. This is only possible because of dedicated donors who empower us to evolve, grow and better serve our region’s children.

North Campus on Track for Major Expansion In June, Children’s Colorado will break ground on a significant expansion of our North Campus location in Broomfield. This comes one decade after the campus first opened. “We are looking forward to expanding access to a variety of pediatric specialists,” said Suzy Jaeger, Senior Vice President and Chief Patient Access and Experience Officer at Children’s Colorado. Since opening in 2008, the North Campus specialty care clinics have been at or near capacity. With northern Colorado’s booming population growth, the facility exceeded its projected five-year patient volume within the first two years.

A conceptual rendering of the expanded North Campus building

When the expansion is complete, anticipated in late 2019, the North Campus facility will comprise nearly 200,000 square feet — four times its current size. The added space will expand existing services and facilities, including inpatient care, sleep studies, operating rooms, specialty clinics, imaging and diagnostic services. The expanded North Campus will also add services, including an Emergency Department that will give families convenient access to expert pediatric emergency care right in their own backyard. The new facility will also offer infusion therapy for cancer patients, outpatient behavioral health services, a creative play center and an outdoor sports therapy field. This much-needed expansion will improve access to outstanding pediatric specialty care, reduce wait times, improve convenience and better meet the needs of our patients and families in the growing north Denver-metro area.

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Aerial photo of the construction site in Colorado Springs

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A rendering of the new Children's Hospital Colorado in Colorado Springs, set to open in April of 2019

Colorado Springs Hospital Makes Strides Toward Completion On Feb. 16, 2018, Children’s Colorado patients, team members and leaders joined the team from GE Johnson Construction Company for a special “topping out” ceremony. The crowd applauded as it watched the raising of a steel beam to the final and highest floor of the future Children’s Hospital Colorado, Colorado Springs, set to open in spring 2019. The beam was signed with messages of encouragement by community members and patient families — many of whom attended the ceremony to cheer on the construction crews.

In its first year of operation, about 150,000 patients are projected to visit the new hospital. That’s thousands of families who will be able to access world-class pediatric care closer to home, saving countless hours of driving time, travel expenses, and missed days of school and work. At nearly 300,000 square feet, the new hospital will have 110 beds dedicated exclusively to kids. It will include a Neonatal Intensive Care Unit, Pediatric Intensive Care Unit, cancer treatment center, epilepsy monitoring units, Sleep Study Center, plus plenty of play areas and family lounges. Every patient room will include a private bathroom, full-sized sleeping couch and storage space so families can stay with their children.

Local patients Lauren and Carter joined construction crews at the Colorado Springs "topping out" ceremony

The new hospital will have southern Colorado’s only dedicated pediatric Emergency Department, along with more than 2,200 square feet for behavioral health services, a critical need in southern Colorado communities.

Generous community partners are stepping up to support expanded access in southern Colorado. The El Pomar Foundation recently committed a generous $1 million lead gift to help fund the new hospital in Colorado Springs.

Thank you to all the donors who are helping us to expand our services for the region’s children.

Did you know? Children’s Colorado serves more U.S. military dependents than any other pediatric hospital system in the country. When the new hospital opens in Colorado Springs, more than 25% of our southern Colorado patients are projected to be from military families.

Give More Nights at Home Expanding the reach of our pediatric expertise and facilities means that more families can stay together closer to home. Email info@childrenscoloradofoundation.org for more information on how you can support the expanded North Campus and the new hospital in Colorado Springs.

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Innovation at Work Center for Innovation launches new technologies in pediatric medicine Children’s Hospital Colorado has a long history of pioneering discoveries that advance health care in groundbreaking ways. Today, with donor support, we’re pushing the boundaries of what’s possible through the Children’s Hospital Colorado Center for Innovation. Founded in 2016, the Center for Innovation is a leading health innovation hub that is transforming pediatric medicine. In two short years, the Center has helped to launch several new medical devices and digital health technologies that are changing lives. “Medical data and knowledge are increasing at exponential rates,” said Robin Deterding, MD, Medical Director of the Center for Innovation and the Ed and Roxanne Fie Anderson Family Endowed Chair for Breathing. “Innovation will either happen to us or with us, and I’d rather it happens with us.” The Center for Innovation offers caregivers and entrepreneurs comprehensive resources to launch their lifesaving health care innovations. With a team of business

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and legal experts — including an Entrepreneur-inResidence — our team provides the support, guidance and vision to bring new pediatric products and technologies to the front lines of clinical care. Not only does the Center for Innovation help to foster homegrown ideas from our 10,000+ hospital team members, it also partners with external entrepreneurs to co-develop products. “It takes significant resources to get a new product from research and development to commercialization,” said Dr. Deterding. “Without the Center for Innovation, many great ideas to help patients would get stuck.” With seven completed partnerships and several patents in the works, the Center for Innovation is making an impact by bringing products to market that improve pediatric care worldwide. Because if there’s an idea that can save a child’s life, we’ll do everything we can to turn that idea into a reality today.


Dr. Robin Deterding

Why Innovate? When it comes to pediatric health care innovations, the potential return on investment is exponential. The innovations we develop today have an immediate impact on patient care, and many will have a long-term impact over a child’s lifespan. These products also support pediatric medical providers, giving them new tools and technologies to achieve the best possible health outcomes for children. Furthermore, the successful technologies and products innovated at Children’s Colorado and codeveloped with external partners don’t sit on a shelf. We’re committed to ensuring that innovations created here are scaled so they can impact children and caregivers around the globe. “Innovation will allow us to do a better job for our physicians, our kids and our families,” said Jena Hausmann, President and CEO of Children’s Hospital Colorado. “Our team is rewriting health care for kids.”

“I support the Center for Innovation because it can impact patients, now and in the future. We are in an era of enormous expansion of data, scientific knowledge and other exciting technologies. With adequate funding and the right team, these types of innovations can lead to breakthroughs that I believe will save lives, reduce suffering and potentially reduce health care costs.” RON COOPER

Children’s Colorado Innovation Fund donor

Help Turn Ideas into Life-Changing Realities It takes significant capital, resources and expertise to turn an idea into a tangible product that benefits patients. Entrepreneurial donors are absolutely critical to our ability to transform health care through innovation. Donations to the Innovation Fund* give Children’s Colorado the resources to scale high-potential ideas into successful products, therapies and technologies that will benefit children and caregivers worldwide. For more information about the Innovation Fund, contact Sharon McMeel at 720-777-1777. *Donations of $250+ by Colorado residents are eligible for Colorado’s Enterprise Zone tax credit.

Ideas Taking Flight Many of the product ideas seeded at the Center for Innovation are gaining momentum. With the support of donors and other partners, two ventures are already making an impact on pediatric health care.

CareDox is a new medical technology for K-12 public schools that ensures better, more consistent health care for America’s children. Their secure, HIPAA-compliant digital platform provides seamless information-sharing between caregivers and school staff, which allows schools to be a partner in managing students’ common chronic diseases (e.g. asthma). CareDox covers more than 4 million students in over 4,000 schools, and the Center for Innovation is partnering to bring the program to even more kids. Together, we have the potential to improve clinical outcomes, provide better care and lower costs.

RxRevu is a digital platform that helps caregivers prescribe the right medication for the right symptoms at the right cost. In partnership with the Center for Innovation, this technology is currently being piloted in Children’s Colorado clinics for a range of common childhood diagnoses, and there are plans to expand it further. The expected result is more precise prescribing of medications, better outcomes and lower health care costs. “By partnering with RxRevu, we are advancing innovation, delivering outstanding care and creating the future for pediatric medicine,” said Dana Moore, Chief Information Officer of Children’s Hospital Colorado.

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Get Moving for Kids This summer, join Children’s Hospital Colorado for our family-friendly fundraising events.

Presented by

Come climb with us at the fourth annual Climb for Courage! Compete in a timed stair climb race covering 2,700 stairs (2.7 kilometers), or participate in a shorter “Fun Wave” that’s perfect for kids and families. The event includes a free Family Festival with games, food and fun. Funds support the new Children's Hospital Colorado in Colorado Springs.

Saturday, June 23, 2018

Falcon Stadium | U.S. Air Force Academy

www.ClimbforCourage.org

Join a community of riders, volunteers and families to support Children’s Colorado. Presented by Prologis, Courage Classic is a two-day bike tour over picturesque Rocky Mountain passes. Riders can chose from multiple supported routes, ranging from 10 to 80+ miles, including family rides.

July 21-22, 2018 | Copper Mountain | www.CourageTours.com 20

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Help patients like Jonathan by leaving a gift in your will When you let us know that Children’s Hospital Colorado is in your estate plans before Dec. 31, 2018, $1,000 will be donated in your honor!

Jonathan, age 14, who was born with a life-threatening heart defect, with his grandmother, Joyce

Now is the time to notify us that you have named Children’s Colorado in your will or estate plan. Thanks to a generous donor, if you let us know about your estate gift before the end of the year, a $1,000 donation will be made in gratitude for your bequest. To easily and confidentially discuss giving through your will, please contact Steve Shineman, CFP® at sshineman@childrenscoloradofoundation.org or 720-777-1752. Please consult an attorney or tax advisor prior to taking any action based on this information. Previously established bequests can qualify for the $1,000 gift if you document your estate gift by Dec. 31, 2018.


Anschutz Medical Campus 13123 E. 16th Avenue, Box 045 Aurora, CO 80045

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GIVE MORE SMILES

Your donation supports hope and healing at Children’s Hospital Colorado. Mail your gift using the enclosed envelope or donate online at childrenscoloradofoundation.org/give.

Born with a serious birth defect affecting his lungs, Eli spent 47 days in the Children’s Colorado NICU. Today, he's a happy 1 year old.

Children’s Hospital Colorado is proud to be recognized among the best children’s hospitals in the nation. As the region's only comprehensive pediatric nonprofit hospital, we rely on generous donors like you to provide the very best care to every child who needs us. Thank you for your support!

Look inside for stories of how your dollars make a difference for kids!

Profile for Children's Hospital Colorado Foundation

Campaign Magazine summer 2018  

Campaign Magazine summer 2018