Changemakers Magazine | Winter 2023

CHANGEMAKERS Winter 2023

Healing Kids Precisely The Power of Precision Medicine page 6

INSIDE Progress for Kids' Mental Health, page 14 Regional Care Clinics, page 18 Philanthropy on the Farm, page 21

CONTENTS

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Donors Make a Difference

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Advancing Personalized Care

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Progress for Kids' Mental Health

17

Marcus' Story

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Regional Specialty Care

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Event Highlights

Colt, 13

Dear Friend, With each first snowfall in Colorado, I marvel at the fact that no two snowflakes are alike.

I am reminded that just as the singular, beautiful ice crystals blanketing our mountains are one-of-akind, no two children are alike. And their differences make a big difference in their health journeys.

Each patient and family served by Children’s Hospital Colorado needs and deserves personalized care — a customized approach known as precision medicine. Precision medicine allows doctors to look at a child’s specific genetic makeup to diagnose, treat or find a cure that works perfectly for them and their uniqueness. What we discover through precision medicine can help lots of other kids, too.

Precision medicine harnesses the power of one — one therapy, one breakthrough, one cure — to change one life. But it takes all of us, one generous community working together in partnership, to make that possible.

That’s why, with the help of visionary donors, Children’s Colorado recently launched the Precision Medicine Institute with the goal of finding new ways to heal kids more precisely, with fewer side effects, and provide individually tailored treatments for every patient who comes through our doors.

In this issue of Changemakers, you’ll read about how precision medicine leads to miraculous things like lifesaving discoveries and care. You’ll learn how we are educating the next generation of precision medicine leaders and thinkers. And you’ll get a window into several other areas of the hospital, such as pediatric mental health and regional outreach clinics, where your generosity is having a big impact.

When you give an unrestricted gift to Children’s Colorado, you help us support all these things… and more.

One day, the precision medicine we practice at Children’s Colorado will benefit kids around the world.

But we aren’t there yet. Some children can’t get the genetic testing they need. Some childhood diseases don’t have diagnoses. And we still don’t have precise treatments for far too many pediatric conditions.

We hope you’ll consider joining us as we unlock the potential of precision medicine at Children’s Colorado across our specialty areas, from cancer and blood disorders to metabolic diseases, from heart conditions to rare neurological diagnoses. Together, we will make miraculous things happen for every child.

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

Children’s Hospital Colorado Foundation inspires giving to Children’s Colorado by engaging donors in mission-aligned partnerships that are trustworthy and relationship focused.

We raise funds that deliver innovative research, treatment and the best possible care across the human lifespan. We engage donors based on trust in the Foundation’s stewardship of dollars and by demonstrating philanthropic impact.

ACKNOWLEDGMENTS Changemakers magazine is a publication of Children’s Hospital Colorado Foundation, a nonprofit organization dedicated solely to advancing the mission of Children’s Hospital Colorado.

Editor: Erin Bodine • Art Direction: John LeCrone • Contributor: Jaime Berg Cady Design: Claro Creative Group • Photography Contributor: Scott Dressel-Martin • Printing: Publication Printers Corp.

NEWS AND UPDATES

New Maternal Vaccine for RSV The Food and Drug Administration (FDA) recently approved a vaccine for pregnant people to protect their babies from respiratory syncytial virus, or RSV, through their first six months. The shot creates protective antibodies that transfer from the mother to their unborn child through the placenta.

Transforming the Treatment for Cystic Fibrosis Children’s Colorado is on the verge of the next breakthrough for the treatment of cystic fibrosis (CF) and will soon be leading trials of genetic-based therapies in children with CF, which have the potential to help all people with CF and move research closer to a cure. Scientists are investigating mRNA therapy, gene editing and gene replacement therapy to determine how best to safely and effectively produce a normal functioning cystic fibrosis transmembrane conductance regulator (CFTR) protein. The CFTR protein is not made correctly or not made at all in those with CF. This protein is essential in maintaining the balance of salt and water on many surfaces in the body, including the respiratory (lungs) and digestive (intestines) tracts.

These therapeutics are now being studied in adults with CF ages 18 years and older. With philanthropic support, researchers have helped transform what was once a fatal childhood disease into a chronic adult disorder.

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It’s the first vaccine of its kind that will protect infants from RSV, which can be severe in children, especially babies. Eric Simões, MD, infectious disease expert and Clinical Professor of Pediatrics at the University of Colorado School of Medicine, has worked on RSV prevention for decades and led the global study in partnership with Pfizer to create the vaccine.

In an interview with National Public Radio, Dr. Eric Simões Dr. Simões said, “My only hope is that we can get these vaccines not only in the U.S., but also to children in developing countries that need it the most.”

Northwestern Mutual Establishes Endowed Fund for Pediatric Cancer As part of Northwestern Mutual’s decade-long support of children with pediatric cancer, the company’s foundation and its Colorado Springs offices have committed $50,000 to establish an endowed fund that will assist the Center for Cancer and Blood Disorders (CCBD) at Children’s Hospital Colorado, Colorado Springs.

In 2022, 770 patients were treated at southern Colorado’s CCBD, where kids rang the “warrior bell” 25 times to celebrate the end of their chemotherapy treatments. The Northwestern Mutual – Colorado Springs Endowment for Childhood Cancer will help kids and families like these by providing critical funds for equipment, patient aid, and program needs in the region.

Believing in the power of helping others, transforming lives, and strengthening communities, Northwestern Mutual’s leaders look forward to the gift having a lasting impact for years to come. “Finding a cure for childhood cancer starts in our own community by providing families and children with the resources they need on their healing journeys,” said Kevin Kaveney, a Northwestern Mutual wealth management advisor.

“We are committed to caring for families in their quest for a cure.”

(left to right) Scott McKechnie, Candace Botkin, Noah Botkin, Carrie Kaveney and Kevin Kaveney present a check to Children's Colorado, Colorado Springs, on behalf of Northwestern Mutual.

How do endowments work?

Endowed funds promote the continued excellence of programs at Children’s Colorado by supplementing general operating support. They allow staff to innovate, grow and strengthen programs and are essential to a fiscally healthy institution by supporting clinical programs, research, education, and advocacy.

When donors make an endowment gift, it is held in an investment portfolio to produce income that the hospital may only use for the specified purpose. Endowments are invested “in perpetuity”; that is, the principal amount, or corpus, remains invested, while a portion of the investment income is used to support Children’s Colorado’s mission.

Endowment funds are professionally invested in a diversified investment portfolio designed to maximize impact by balancing two primary objectives: maintaining and growing the long-term value of the corpus; and providing ongoing financial support for the specified programs and purposes.

For more information on establishing an endowment, please contact Sharon McMeel, Chief Development Officer, at smcmeel@childrenscoloradofoundation.org or Kendall Córdova, Vice President of Philanthropy, at kcordova@childrenscoloradofoundation.org.

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DONORS MAKE A DIFFERENCE

70 Years of Supporting Kids with Speech and Language Disorders In 1953, a social worker at Children’s Hospital Colorado contacted the Scottish Rite Foundation of Colorado about a little boy who needed speech therapy — an expense his single mother could not afford. The Masonic organization committed to assisting the family, and through that initial offer of support, an enduring partnership was born. This year, the Scottish Rite Foundation celebrates 70 years of making an incredible difference at Children’s Colorado for generations of families and children with hearing, speech and language disorders through its continuous philanthropic support.

As the hospital’s first donor of record, the Scottish Rite Foundation helped fund treatment for 14 children with language disorders in its first year of giving seven decades ago. Today, thanks to the fraternal group’s steadfast generosity, nearly 1,000 children across Colorado receive treatment each year for speech and language disorders, such as dyslexia or speech production errors, through RiteCare Scottish Rite Childhood Language Program clinics.

Over 70 years, the Scottish Rite Foundation has provided nearly $30 million in philanthropic support for language programs. In 2003, the organization designated $2 million to establish the Kelley Family/Schlessman Family Scottish Rite Masons Chair in Childhood Language Disorders. This endowed chair, currently held by Kristin Uhler, PhD, allows Children's Colorado to help lead and coordinate statewide hearing, speech and language services for kids with diagnoses that include developmental delays, autism, cerebral palsy, deafness, head injury and learning disabilities, to name a few.

Early Telehealth Investor The Scottish Rite Foundation was also an early investor in telehealth in 2012, enabling clinicians to deliver speech-language therapy services for children in remote and underserved areas of the state. By funding this technology platform, the organization’s foresight paved the way for telehealth care to be broadly implemented during the COVID-19 pandemic, which allowed Children’s Colorado to pivot quickly and transition thousands of appointments online during pandemic-related lockdowns.

Sisters, Ella (left) and London, participated in RiteCare clinics which helped them with their dyslexia.

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For foundations looking to partner with Children’s Hospital Colorado Foundation, please contact Jennie Dawe, Senior Director of Foundation Relations, at jdawe@childrenscoloradofoundation.org.

Pediatrician’s Legacy of Care Lives On Dr. Steve Perry and his wife, Jody Papini Perry, dedicated their professional lives to children.

For nearly 25 years, Steve cared for kids as a pediatrician at Cherry Creek Pediatrics, the practice he owned. Jody was a 4th through 8th grade teacher and later became a school administrator.

Resource Connect serves diverse patient populations

Steve was a tireless advocate for pediatric immunizations. He served on the Children’s Hospital Colorado Medical Staff Board and was president of the Colorado Chapter of the American Academy of Pediatrics.

Because he was so committed to kids, when Steve passed away in 2019 at 54 years old after battling cancer, Jody knew that he would have wanted any funds raised in his honor to continue impacting children and their health.

" Steve believed that every child has the right to high-quality medical care — that was his passion," said Jody, speaking through tears.

Steve and Jody

In 2020, Jody established the Dr. Steven Perry Endowed Fund at Children’s Colorado with memorial gifts given in her husband’s honor along with her own gift. She also included a significant future gift to the endowed fund in her estate plans.

After learning about the Resource Connect Program and Children’s Colorado community health navigators, who work in pediatric practices with diverse populations and help families secure resources for basic needs, Jody knew that this was where her husband’s legacy of caring for children could live on. She designated the endowed fund to support these critical positions in Resource Connect.

“Kids have the right to an even playing field — and this is one way to make sure that all children have a good start in life,” said Jody of the community health navigator roles within the hospital’s Resource Connect Program. “Cancer took away the impact Steve was having on children’s lives, but now, even in death, he is still fighting for children’s health.”

For more information about making a planned gift to Children’s Hospital Colorado Foundation, contact Debbie Roberts, Director of Gift Planning, at droberts@childrenscoloradofoundation.org.

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Sisters Vina (left) and Lena

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Healing Kids.

PRECISELY. Children’s Colorado is partnering with bold philanthropists to harness the full potential of precision medicine. We are building a powerful, comprehensive, integrated system to provide personalized care. Donors’ gifts are fueling: • Better access to genetic testing and faster diagnoses • More precise treatments and novel therapies To support this program, please contact Emily Colbenson, Chief Strategic • Opportunities to promote awareness and education related to precision medicine Philanthropy Officer, at ecolbenson@childrenscoloradofoundation.org.

With focused investment, precision medicine will become one of our most powerful tools for children’s health. Donors, investing together, can build a system that equips Children’s Colorado to offer each child the right treatment at the right time by the right team.

Name (left) and Name.

SCAN TO WATCH the video, "Only One Me," and learn more about the impact of precision medicine at Children's Colorado.

Better, Faster and More Accurate Diagnoses A Quest to Find the Cause of Lena and Vina’s Debilitating Seizures In 2007, Nazar was in Iraq on tour with the U.S. State Department when he got a call from his wife, Sana, in Colorado Springs. She was going into labor with their first child.

What should have been a joyous occasion quickly turned into an emergency of nightmarish proportions. From the moment their daughter Lena was born, she had seizures — so many that the baby’s brain imaging scans turned completely black from the waves of damaging activity.

Sana, alone in a new country and just learning English, was terrified as doctors tried every epilepsy medication at their disposal to stop the baby’s uncontrollable spasms.

Nothing worked.

Finally, caregivers gave the baby girl vitamin B6 — a treatment known to halt seizures caused by a rare genetic mutation that leads to a deficiency of this critical vitamin — and Lena’s convulsions stopped, at least temporarily. Eventually, the seizures returned, though vitamin B6 seemed to lessen their frequency and intensity.

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Searching for Answers From there, for years, the couple searched for answers to their beautiful, dark-haired baby girl’s debilitating neurological condition, eventually ending up at Children’s Hospital Colorado.

There, doctors were also perplexed, especially after genetic testing showed that Lena did not have the known DNA mutation related to vitamin B6 that would explain her seizures. Scott Demarest, MD, a neurologist who serves as the Precision Medicine Institute’s clinical director, began an unrelenting search for answers about Lena’s condition in her — and her parents’ — genetic makeup, conducting a series of DNA sequencing. But a genetic culprit remained frustratingly elusive.

About a year after Lena was born, Aza was born. Aza, a little boy, showed no signs of the life-threatening condition that continued to plague Lena. Many days, Nazar and Sana thought they would lose Lena as she stopped breathing after experiencing dozens of seizures a day.

Then, just a few years later, Sana became pregnant again, and lightning seemed to strike twice. With her very first breaths, Vina, their second daughter, also started having unmanageable seizures. As this extremely distressing situation played out again for Nazar and Sana, doctors carefully documented Vina’s reaction to vitamin B6 administration; the baby girl had the same response as her older sister — slightly diminished convulsions. Yet the cause of these seizures remained a I would like for all baffling mystery.

families to have the opportunity to experience the power of precision medicine."

– NAZAR, FATHER OF VINA AND LENA

Nazar, Vina, Sana and Lena

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Nazar and Sana barely slept, the couple was on the verge of bankruptcy since they couldn’t work due to their daughters’ round-the-clock care needs, and the outlook for the girls was grim. Desperate, the Kurdish family moved back to their native Northern Iraq as expatriates, so Nazar could work in a higher paying job in the oil and gas industry, while being close to his family.

A Lifechanging Discovery Then, on Nov. 9, 2017, in the middle of the night, Nazar’s phone rang. It was Dr. Demarest.

After nearly a decade of searching, the neurologist had never given up hope that precision medicine would help uncover the root of the girls’ issues. Every time new technology and advances were made in the field, Dr. Demarest would retest and sequence the children’s genetic samples.

This time, he had found an answer.

As Nazar furiously took notes on the back of a tissue box, the doctor shared his findings. Both girls had a newly discovered, extremely rare genetic mutation that caused their cells to attack and degrade vitamin B6 in their bodies. Vitamin B6 is a coenzyme involved in more than 150 biochemical reactions, so its absence in the girls’ systems was causing severe harm.

“The information that Dr. Demarest shared changed our lives forever,” said Nazar. “He finally found the gene responsible for the girls’ seizures. It was a miracle.”

Equipped with this knowledge, the family was advised that their daughters’ seizures could likely be stopped by taking an active form of vitamin B6, known as pyridoxal phosphate — at much higher doses than they had previously.

Within a year of implementing this new treatment plan, both girls stopped having seizures altogether, except for the rare occasion.

The over-the-counter supplement they take several times a day can be found at natural grocery stores —

and costs about $16 per bottle. Now that their seizures have ended, the whole family has begun a new chapter in their lives. The girls are starting to recover many of the cognitive and developmental functions they had lost — including reading, speaking, and taking part in more physical activities.

They participate in physical therapy, occupational therapy, and speech therapy and receive many other services. Lena and Vina are making significant strides in school, and their family can finally look beyond helping the girls survive one day at a time.

At last, Nazar and Sana are hopeful for their daughters’ futures. The couple started a business that Lena and Vina assist with — and the family donates a portion of the proceeds back to the Precision Medicine Institute.

“I would like for all families to have the opportunity to experience the power of precision medicine like we did,” said Nazar.

Watch a video about Lena and Vina's story here

Together with donors’ partnership, Children’s Colorado will improve the

accessibility, speed, and accuracy of diagnoses—so physicians can better treat a child’s illness today—and build the knowledge base to improve future diagnostics.

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Grace, 13

Accelerating the Development of Innovative Treatments Saving Grace’s Vision with a New Gene Therapy In many ways, Grace is a typical 13-year-old. Like other kids her age, she loves hanging out with her friends, trying out new makeup, accessorizing her outfits with jewelry, and listening to Taylor Swift music. But “Amazing Gracie,” as her family calls her, is also extremely atypical and unique: she has a rare disease called posterior column ataxia with retinitis pigmentosa (PCARP), which has caused her to lose about 95% of her vision and made her unable to feel pain, a circumstance that has frequently become lifethreatening.

Since the discovery of her vision issues when she was about 2½ years old, Grace has been cared for at Children’s Hospital Colorado by ophthalmologist Emily McCourt, MD, who holds The Ponzio Family Chair for Pediatric Ophthalmology.

Initial genetic testing showed that Grace had only one of the two mutations that cause PCARP, so the hospital’s pediatric experts were baffled and continued to manage her symptoms as best they could. Eventually, Grace underwent whole genome sequencing, a process that examined both exons and introns in all her genes. Dr. McCourt and her team, including geneticist Austin Larson, MD, and pediatric retina and inherited retinal disease specialist, Marc Mathias, MD, discovered that Grace indeed had two mutations in the FLVCR1 gene, which causes PCARP, but that one was “intronic” - essentially hidden in her DNA at the beginning of a sequence and only perceptible through this high-powered sequencing technology.

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CHANGEMAKERS

Finally, with a formal diagnosis in hand, Dr. McCourt began exploring potential treatments for Grace’s condition. The damage to Grace’s nerves was so severe and had caused so many injuries over the little girl’s life that doctors and her family decided to forego attempts to restore feeling in her body, which could have caused chronic debilitating pain since she has not experienced that sensation before. Instead, her care team focused on saving what little vision the girl had left – about 5% of standard eyesight. Thankfully, it turned out that Grace’s mutation is sometimes treatable with gene therapy.

Working with the n-Lorem Foundation, which focuses on patients with unique gene mutations, and colleagues at Boston Children’s Hospital, Dr. McCourt helped create a customized treatment, known as an antisense oligonucleotide (ASO), targeting Grace’s particular mutation. Laboratory testing yielded encouraging results, and the drug, made just for Grace, recently gained Investigational New Drug approval by the FDA. She began treatment in late August – receiving her first injection the day before her 13th birthday.

“The goal of this treatment is to stop the progression of Grace’s disease, letting her retain her current level of vision for the rest of her life and allowing her to have more freedom and independence as an adult,” said Susan, Grace’s mom.

This gene therapy works by binding to Grace’s RNA to essentially skip over Grace’s genetic mutation and only code the healthy portion of her DNA. Because of this, it does not target Grace’s specific disease per se, but instead, lasers in on her type of intronic mutation and guides her body to make more healthy protein.

As a result, the possibilities for this ASO therapy go far beyond just one patient, said Dr. McCourt, perhaps eventually helping numerous patients with rare diseases who have intronic mutations.

Dr. Emily McCourt and Grace

Grace with her mom, Susan

“It could result in leaps and bounds of progress,” said Susan. “It’s astounding to be a part of this kind of novel treatment that has the potential to help so many people. I cannot express enough gratitude to Dr. McCourt for making this happen. Precision medicine is important to support because it is the future of medicine and a new way of treating patients. It’s exciting and incredible that Children’s Colorado is doing this kind of work.”

Together with donors’ partnership, we will expand the pipeline

of available therapies and drugs, so each child receives the most effective treatment for their specific gene expression and condition.

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Educating and Training the Next Generation of Human Genome Experts Funding a First-of-its-Kind Precision Medicine Fellowship Precision medicine is one of the most rapidly evolving paradigm shifts in healthcare. Twenty years ago, fewer than a dozen genes were identified and associated with diseases. Now, a single genomic panel might test for thousands of genes associated with myriad conditions.

Because the field of precision medicine is new and constantly changing, many physicians have not yet been trained to analyze genetic tests or communicate results to patients. And the pipeline of precision medicine specialists is narrow: according to the American College of Medical Genetics and Genomics, there are not enough clinicians with genetic training to fill current job openings.

As Children’s Hospital Colorado prepares for a future in which “precision medicine is just medicine,” as one of our physicians has envisioned, doctors will need to be trained to readily incorporate genetic tests into care regimens, evaluate results, and modify treatment plans accordingly.

Precision medicine will become the standard model, and providers across our healthcare system must be proficient in using the tools that make personalized care possible.

Preparing for a New Paradigm

The first-of-its-kind Children's Colorado Precision Medicine Fellowship Program will train the next generation of genetics specialists.

To meet these needs, Children’s Colorado and the University of Colorado Department of Pediatrics recently established an innovative, first-of-its-kind Pediatric Precision Medicine Fellowship Program, funded in part by philanthropy. This yearlong fellowship offers trainees an introduction into the genetic principles and mechanisms underlying rare disease and allows them to practice diagnosing conditions through a variety of analytical methods, such as metabolic testing, gene panel testing, and whole exome and genome sequencing, to name a few.

“Guided by our faculty experts, precision medicine fellows will learn about pre- and post-genetic test counseling, develop an understanding of the various symptoms of rare diseases while collaborating with a multi-disciplinary treatment team, and acquire the skills necessary to implement a precision medicine treatment program,” said Margarita Saenz, MD, program director for the fellowship program.

Fellows will be exposed to state-of-the-art diagnostic techniques as well as novel therapeutics, including gene therapies, antisense oligonucleotides (ASOs), enzyme replacements, immunotherapies, and cell-based therapies.

Uniquely, the program will be tailored to a trainee’s interests — whether that’s in cancer, immunology or neurology, or another of the hospital’s specialty areas.

Once fellows complete their training, they will have specialized knowledge and expertise in precision medicine, growing the pool of world-class talent at Children’s Colorado who will care for generations of children to come.

Together with donors’ partnership, Children’s Colorado will ensure that our

system-wide workforce is educated in this rapidly evolving area and that we have a wide pool of providers able to analyze genetic testing data, provide accurate diagnoses, and offer exceptional care.

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CHANGEMAKERS

Precision Medicine Institute Advances Personalized Pediatric Care In July, Children’s Hospital Colorado launched the Precision Medicine Institute (PMI), which will allow experts to incorporate precision medicine more efficiently into care provided to patients throughout the hospital.

The new Institute uses innovative technology to integrate big data, including genomic data, into every child’s care plan to determine the best treatment for each patient.

Precision medicine, also known as personalized medicine, uses technology and information to address the root causes of disease, allowing experts to provide more precise diagnoses that result in more targeted treatment plans, better outcomes, and potential pathways to cures.

The Precision Medicine Institute is led by (from L to R): Children’s Colorado specialists are pioneering novel precision medicine Scott Demarest, MD, Clinical Director of the Precision Medicine Institute; Alisa Gaskell, PhD, Scientific Director treatments for numerous childhood diseases, such as pediatric cancer, of the Precision Medicine Institute; and Gregor Stoddard, rare neurodegenerative diseases, cystic fibrosis, cardiomyopathy, Administrative Director of the Precision Medicine Institute.

neuromuscular conditions, and genetic and metabolic diseases.

Generous giving from two generations of the Searle family helped kickstart the Institute. Children’s Colorado Foundation Board of Trustees Chair Elizabeth “Betsy” Searle donated $5 million to advance precision medicine in treating and curing childhood diseases, such as cancer; and her daughter, Sara Higginbottom, serves as a member of the 2221 Society, which aims to triple the hospital’s genetic testing capabilities by raising $550,000 for an additional genome sequencing machine.

The Morgan Adams Foundation's Pioneering Investments in Precision Medicine In August, The Morgan Adams Foundation celebrated its 20th Annual Morgan Adams Concours d’Elegance, a fundraising event to fight children’s cancer. Joan Slaughter and her late husband, Steven Adams, started the event to honor their daughter Morgan, who passed away from cancer when she was 6 years old. Since 2001, when The Morgan Adams Foundation was founded, the organization’s philanthropic gifts to Children’s Colorado have been instrumental in laying the groundwork for the hospital’s precision medicine work.

Morgan Adams, 1st grade

These pioneering investments dramatically advanced genetic sequencing technologies and expanded access to genomic testing for every child with a brain tumor.

“The arc of what the organization has funded from the beginning — starting with RNA chip technology 22 years ago — has taken us from a 30,000-foot view of examining brain tumors to a 100-foot view today,” said Rajeev Vibhakar, MD, who leads the Morgan Adams Pediatric Brain Tumor Research Program and holds the Dr. Nicholas Foreman Endowed Chair for Neuro-Oncology Research. “Thanks to our ongoing partnership with The Morgan Adams Foundation, we are now exploring the most cuttingedge technology in the world — single-cell RNA sequencing, which looks at every single cell in a tumor, opening new possibilities for diagnosing, treating and curing cancer.”

To support the Precision Medicine Institute, please contact Emily Colbenson, Chief Strategic Philanthropy Officer, at ecolbenson@childrenscoloradofoundation.org.

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Progress in Pediatric Mental Health Specialty and Crisis Care Donor Investments Make a Big Impact Nearly two and a half years after Children’s Hospital Colorado declared a Youth Mental Health State of Emergency in May 2021, progress continues to be made in helping get kids the mental health resources and care they need, thanks to our giving community.

Today, bold donors are rallying with Children’s Colorado to transform pediatric mental health care, helping to create a model of specialty outpatient care and advancing crisis care, which are both central to this vision.

For a new specialty clinic, the Mood Disorders Clinic, Dale and Cindy Francescon’s gift through the DCF Foundation of more than $4 million will establish the Dale and Cindy Francescon Family Endowed Chair for Mood Disorders.

The Francescon family’s philanthropy will aid in the recruitment of the program’s leader, who will hold the endowed chair; provide finances for hiring additional key workforce; and bolster vital family mental health support offerings. With steadfast support from our generous community, mental health care strategies will be tailored and implemented to best serve different pediatric populations’ greatest needs across the Children’s Colorado network, including in southern Colorado and other regional locations.

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Creating a Model of Specialty Outpatient Mental Health Care Currently, there is a dearth of accessible mental health care providers who treat conditions, such as eating disorders, mood disorders, or neurodevelopmental disorders. Many specialists don’t accept insurance. And waitlists to see these in-demand caregivers can stretch to six months or longer.

The youth of Colorado deserve best-in-class, specialized mental health care. Children’s Colorado, in partnership with philanthropists, has developed a comprehensive plan to establish seven outpatient specialty mental health clinics. These care centers will shift away from today’s generalized treatment model and instead offer expert, dedicated care for: 1) anxiety disorders, 2) mood disorders, 3) disruptive behavior disorders, 4) early childhood development, 5) eating disorders, 6) medically complex and functional disorders, and 7) neurodevelopmental disorders.

Rolled out in five phases, once this vision has been realized, Children’s Colorado will provide more specialty care options than most other children’s hospitals in the nation. These clinics will help treat and mitigate disorders during childhood to change the trajectory of kids’ mental health for years to come, improving outcomes and saving lives.

Shelten, 18, and his mom

Advancing Crisis Care Mental health crisis care for kids should not be a one-size-fits-all approach. Recognizing this, Children’s Colorado has developed plans to launch a new model for crisis care: one finely tuned to meet kids with the right level of care at the right time. Philanthropy is key to this transformation.

This vision cannot wait. Children are coming to our emergency department at an unsustainable pace. The need for care has skyrocketed. Children’s Colorado’s crisis team — following extensive research, benchmarking, and review — has created a plan to combine the most effective models in crisis care, creating an innovative, comprehensive approach. Together with donors, we are establishing a full spectrum of crisis services to provide the best possible care for patients experiencing any mental health crisis by implementing the following advances: Building a New Outpatient Crisis Clinic: A short-term, bridged pathway for children who have entered the emergency department (ED) but are not currently in need of higher levels of care.

In Colorado Springs, this clinic will serve patients while they wait for community or outpatient services, allowing patients to be discharged and connected to continuing treatment.

Creating an Improved Model for Emergency Department Mental Health Intake: Every patient who enters the emergency department will receive an initial mental health acuity score and be placed on tracks according In southern Colorado, donors’ gifts will accelerate the creation of three high-priority outpatient specialty clinics, each of which will address a unique need in the region: General Mental Health Clinic A brand new, purposefully designed space where children can receive highquality assessment, accurate diagnoses, and individualized, evidence-based treatment for mental health challenges.

Outpatient Crisis Clinic A short-term, bridged pathway that will offer evaluations, evidence-based interventions, and medication management for children who are in crisis but do not meet criteria for inpatient care.

Early Childhood Clinic Here, early childhood specialists will offer evidence-based assessment and treatments specifically designed for the first years of life, implementing interventions that can have profoundly positive impacts on kids’ lives.

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to the severity of their condition. Patients in urgent distress will undergo a full crisis assessment, while those with lower scores will be connected to more appropriate settings for their healing.

In Colorado Springs, a similar model will be employed.

Low-acuity patients will be evaluated without being placed in the psychiatric ED, avoiding a stressful experience that is not medically necessary and reserving space for those who really need that level of care to ensure their safety.

Establishing an Acute Stabilization Program: Bridging the gap between inpatient and outpatient care, this program will offer an evidence-based model for crisis stabilization. This will ensure patients’ safety and allow them to recover in a comfortable setting by establishing links to ongoing outpatient care and creating effective safety plans so patients can be discharged home. Children’s Colorado will be one of few hospitals in the nation to deploy this best-in-class, evidence-based approach.

In Colorado Springs, this will include establishing three new beds for patients who are not yet considered safe to go home, and who will benefit from a brief, family-centered treatment model. For children who need inpatient services, Colorado Springs will continue partnering with the Anschutz Medical Campus and local hospitals to find care that meets kids’ needs.

Advocacy from the Capitol to a College Campus Children’s Colorado not only advocates for improving the mental health of kids across the state and country, but we also help our patients develop the skills to advocate for themselves.

Emma, a patient ambassador who struggled with anorexia nervosa, anxiety and depression, has seen how significant community and donor investments have improved the current landscape for pediatric mental health and yet there is still work to be done so kids like her can get the care they desperately need.

Emma, 19

To support pediatric mental health programs at Children’s Colorado, please contact Erin Nasralla, Director of Strategic Philanthropy, at enasralla@childrenscoloradofoundation.org.

The Wait to Nowhere To learn more about the challenges facing kids who are experiencing mental health crises, scan below to watch a trailer for the documentary, “The Wait to Nowhere: When a Crisis Goes Untreated.” The strategic plans outlined above have been designed to address one of the most pressing problems of our lives: providing access to mental health care for our children.

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Paying it forward, last year Emma worked tirelessly with state lawmakers to help establish the Colorado Department of Public Health and Environment’s Disordered Eating Prevention Program.

Now a freshman at U.C.L.A., she plans to double major in political science and economics and hopes to work in public policy in the future. She’s seen firsthand the impact that philanthropy and advocacy can have on children’s lives and says that testifying on behalf of the eating disorders bill at the Colorado Assembly was one of her proudest achievements.

MARCUS’ STORY

Surgery Saves Ambassador with Rare Type of Strokes In early 2020, just as the COVID-19 pandemic began, Marcus, who was 7 at the time, started having sporadic headaches.

Almost a year later, Marcus’ symptoms became much worse. He was increasingly lethargic and slept for extended periods of time. “He couldn’t even lift his head up,” said his mom, Stephanie, “and we kept encouraging him to get some rest.” His pediatrician recommended an MRI, but before he could get in for imaging, Marcus spiked a fever and slept almost 18 hours. His mom took him to the closest emergency room, where a CT scan showed three areas of stroke in his brain. From there, Marcus was airlifted to Children’s Hospital Colorado and admitted into the pediatric intensive care unit (PICU).

Doctors at Children’s Colorado quickly diagnosed an instability in Marcus’ neck as the culprit for the mysterious symptoms he had been experiencing for months. “To be at Children’s Colorado was amazing,” said Adam, Marcus’ dad. “Within 24 hours, they found what was causing the strokes.”

Marcus’ C1 and C2 vertebrae did not grow and develop as they should have. This structural abnormality resulted in a tear in Marcus’ vertebral artery – which interrupted the blood flow to his brain and spine, causing strokes. Marcus is one of fewer than 50 kids in the world to be diagnosed with this type of stroke.

Tim Bernard, MD, director of the Childhood Stroke Program at Children's Colorado, and Todd Hankinson, MD, division head of the hospital's Pediatric Neurosurgery Program, used their expertise to collaborate and develop a treatment plan that would prevent Marcus from having more strokes.

Marcus wore a neck collar for stability until surgeons could perform a spine fusion on his vertebrae. After the eight-hour surgery, Marcus remained in a neck collar for another 12 weeks. He has not had a stroke since he was admitted to Children’s Colorado’s PICU and the memory and balance problems that previously plagued him have disappeared.

Marcus, 10

Today Marcus is a funny, independent 10-year-old who loves to play baseball and soccer. “He’s literally everyone’s favorite person,” said Stephanie. “There is no one on the planet like him. He’s the most amazing person you’ve ever met. He is proud to be an ambassador and raise money for the Stroke Clinic at Children’s Colorado,” said Stephanie. “They saved my life,” added Marcus.

Surgery can play a role in the treatment plans for children battling almost every type of illness and injury. Recognizing this, the Center for Children’s Surgery at Children’s Colorado has developed a comprehensive strategic plan to set a new, higher standard for pediatric surgery. Together, in partnership with bold donors, we will continue to deliver some of the top surgical outcomes in the country and build the premier child health surgical program in the nation.

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Specialty Health Care Makes the Difference in Rural Areas When Raven was 15 months old, her pediatrician in Riverton, Wyo., discovered she had an abnormal heart murmur. After being referred to Children’s Hospital Colorado at the Anschutz Medical Campus for several tests, Raven’s parents learned that she had a form of congenital heart disease called mitral valve arcadia, which means the flap of tissue in the heart that opens and closes to make sure blood is flowing in the right direction was not working properly.

Raven underwent several catheter procedures, including one in which her heart valve was “ballooned” to allow her time to grow before she would need open-heart surgery to replace her valve. When she was 7 years old, her cardiologist determined that it was time to replace Raven’s valve with an artificial one. She underwent open heart surgery in 2019 and is now a healthy 11-year-old.

Raven, 11

Raven requires several checkups a year with her cardiologist, and without the Children’s Colorado Outreach Clinics in Casper, Wyoming, Raven’s family would have to travel to Denver, which would add significant stress to their lives. Children’s Colorado’s Regional Outreach Clinics give comprehensive access to the best care for kids throughout southern Colorado, Wyoming, and Montana. These outreach clinics offer our expertise to regional communities, like Riverton, and provide much needed specialty pediatric health care.

A life-threatening illness is already traumatic and extremely worrisome for a family without having to add the burden of traveling a great distance, missing work and school, leaving other children at home and taking on numerous expenses.

“The Children’s Colorado Cardiology Outreach Clinics are such a gift,” said Jeremy, Raven’s dad. “Bringing Raven’s heart team to central Wyoming is priceless for our family and an incredible lifesaver for us. We have lots of responsibilities in Riverton, including livestock on our ranch, jobs, our younger son, and so many other things. The fact that her team of experts comes to us has made what would otherwise seem like an insurmountable challenge something that fits into our daily lives. We don't have to travel for hours and incur so many additional lodging, meal, and travel expenses. For this we could not be more grateful.”

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CHANGEMAKERS

Help Kids and

Save on Taxes Support for Healing Close to Home Without community clinics, patients must often travel long distances — resulting in missed days of school or work, hours in a car, and trips over mountain passes in challenging weather.

In some instances, families forego much-needed specialty care for their children because they can’t miss work or don’t have a reliable vehicle to travel these distances. In addition, more than 75% of rural and frontier counties in Colorado are designated as Health Professional Shortage Areas, meaning they have both a high prevalence of poverty and less than one healthcare provider per 3,500 residents.

By bringing the hospital to patients and families who might not reach us otherwise, we provide the world-class care that every child deserves — regardless of where they live.

Colorado taxpayers who make a qualifying gift* to Children’s Hospital Colorado are eligible for a generous state income tax credit of up to 25%.

Antonio, 6

With increasing demand for our services throughout the region, we are growing and expanding our specialty clinics regionally, including a new outpatient care clinic location in Grand Junction, Colo., that opened in October 2023. Philanthropic support helps ensure that children can heal close to home with the growth of these programs.

LEARN MORE about the Colorado Enterprise Zone Tax Credit at Grand Junction, Colo.

GiveChildrensCO.org/EZ

* In 2023, a qualifying gift is defined as an outright gift (unrelated to a

special event) of at least $500 to Children’s Hospital Colorado Foundation specifically designated toward the Enterprise Zone Program in support of our Child Health Research Fund, Pediatric Surgery Fund, Pediatric Mental Health Fund, Cancer and Blood Disorders Research Fund, Precision Medicine Fund or Innovation Fund.

A gift to the Enterprise Zone provides a 25% credit against Colorado state income tax if giving an outright gift of cash or a 12.5% credit for gifts of appreciated stock.

This information is of a general nature and should not be construed as legal, accounting or tax advice. Every taxpayer’s situation is different, and tax laws are constantly changing. Please consult a tax advisor prior to taking any action based on this information.

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FUNDRAISING EVENTS

Courage Classic Tops $3 Million, All for Kids At the 2023 Children’s Hospital Colorado Courage Classic Bicycle Tour held at Copper Mountain Resort on July 15 and 16, community members came together to conquer mountains, raising more than $3.2 million, all for kids. We are beyond grateful for the Courage Classic community’s ongoing dedication to children’s health.

Riders collectively cycled more than 100,000 miles over the weekend — enough distance to go around the world four times over.

On top of that, together, our volunteers spent more than 4,000 hours working as marshals and medics, staffing aid stations and filling many other critical behind-the-scenes duties. All of this from riders and volunteers who hailed from more than 40 states and 4 countries.

TO LEARN MORE, visit CourageTours.org

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More Than $700,000 Raised at Philanthropy on the Farm At the third annual Philanthropy on the Farm event held Aug. 25, generous supporters helped raise more than $700,000 for southern Colorado programs at Children’s Hospital Colorado, Colorado Springs. The casual, outdoor, farm-to-table experience was held at the Flying Horse Ranch. Guests heard from several speakers, including two incoming patient ambassadors, Maddy and Liam, who shared their stories and the impact that surgery at Children’s Colorado has had on their lives.

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1. Guests at Philanthropy on the Farm mingle and enjoy the festivities.

2. Children's Colorado Foundation President and CEO Jennifer Roe Darling speaks to the crowd.

3. J ohn Bealer, MD, dances with patient ambassador Maddy.

4. G uests enjoy dinner.

5. Deannah Baesel, Foundation team member, interviews ambassadors Maddy and Liam.

6. Incoming patient ambassador, Liam, with his parents, Tina and Will.

7. “ Frankie the Fox” toys, Maddy’s favorite stuffed animal, donated by guests to Children’s Colorado patients.

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

This holiday season, you can give comfort and joy to our patient families.

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Kai, 17

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