Changemakers Magazine | Spring 2023

CHANGEMAKERS

Dear Friends,

I am so thankful for you and excited about the generosity that has propelled us into 2023. Thank you for your commitment to making the lives of children better. Philanthropy is the driving force in making Children’s Colorado one of the best pediatric health care systems in the nation. Our extraordinary donors, like you, make extraordinary advances possible, and we are proud to partner with a community of visionary, collaborative philanthropists, who have the utmost belief and confidence in our hospital and Foundation.

In 2022, our community donated more than $90 million, the most given to Children’s Colorado in a single year. Community support helps us care for more kids than any other hospital in our seven-state region, and philanthropy ensures access to world-class pediatric expertise for every family who needs us. Your generosity drives lifesaving innovations and discoveries for kids.

Children’s Hospital Colorado Foundation received gifts from more than 27,000 loyal donors, and we are sincerely grateful for this outpouring of support from you and so many others. Our 29 patient ambassadors connected with their networks to crowdfund more than $43,000 to support their favorite areas of the hospital as well.

In 2022, nearly $30 million was donated in support of pediatric mental health, which demonstrates our community’s commitment to actively addressing the state of mental health emergency facing our kids.

Last year’s record-breaking generosity was awe inspiring and motivating to all who serve the Children’s Colorado mission, but we still have a long way to go until cancer is cured, mental health is adequately addressed, new treatments are discovered for rare and common childhood diseases, and all kids thrive.

Children’s Colorado will require sustained, ongoing support from our dedicated community of donors. You are part of our bold vision of transforming child health in the decades to come. We look forward to partnering with you to create an immeasurable impact on kids’ and families’ lives together.

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 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: Jaime Berg Cady • Art Direction: John LeCrone • Contributors: Erin Bodine, Jessica Ennis, Mary-Margaret Sullivan

Design: Claro Creative Group • Printing: Publication Printers

Children’s Colorado is like a second home for our family. They take good care of me."

– COOPER, 10

TRANSFORMING Children's Surgery

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 has developed a comprehensive strategic plan to set a new, higher standard for pediatric surgery. Together, in partnership with bold donors, we will build the premier child health surgical program in the nation.

A Care Team that Becomes Family

Cooper has been receiving care at Children’s Colorado since he was 15 months old when his mom discovered a bump on his back, and his pediatrician suggested they get it checked out. He received further testing, where X-rays revealed that his spinal canal, a bony channel that protects the spinal cord and nerves, was 40% narrower than it should be. That led to a diagnosis of Morquio syndrome, a rare genetic disorder that causes skeletal abnormalities and other serious medical issues.

“That was a really scary time,” says Cooper’s mom, Chris.

Patients with this condition are missing an enzyme that allows the body’s cells to break down and dispose of waste, causing progressive cellular damage and skeletal dysplasia. Fortunately, just two weeks after Cooper was diagnosed, the Food and Drug Administration (FDA) approved a new enzyme replacement therapy for the treatment of Morquio syndrome. At 18 months old, Cooper became the youngest patient ever to receive Vimizim, the newly approved medicine.

Ever since then, Cooper has been getting weekly Vimizim infusions at the Children’s Colorado Center for Cancer and Blood Disorders. The appointment takes about six hours, but Cooper says the team there helps him to pass the time, especially the child life specialists who play video games and made-up games with him.

He also gets some comfort from his service dog, Velocity, who is allowed to join him at the weekly appointments. She’s been trained to apply calming pressure to Cooper’s legs to help alleviate the muscle cramps he gets during his infusions.

Rare Diagnosis Requires Specialized Care

Cooper has undergone multiple reparative surgeries to address the problems with his bones with one of the leading experts in Morquio syndrome, who is based in Delaware. In 2019, he underwent spinal stabilization surgery on his neck. Then, in 2020, in the middle of pandemic, he had major surgery on his hips, knees, and ankles.

In a cast from his chest to his ankles after that surgery, Cooper and his parents embarked on a more than 1,700-mile road trip home. “Cooper was strapped in the backseat, and Velocity was the co-pilot up front,” said Chris, Cooper’s mom.

The trip home wasn’t easy, and neither was the recovery, but the surgeries helped improve Cooper’s mobility. Cooper has more surgeries in his future, but now he won’t have to travel across the country

to receive care. Children’s Colorado recently welcomed the other leading expert in this field, Klane K. White, MD, MSc, a pediatric orthopedic surgeon, and the Rose Brown Endowed Chair in Pediatric Orthopedics, to lead the Orthopedic Surgery Program as the newly appointed chair of the Orthopedics Institute. White is well-known to Cooper and his family, because he is an internationally recognized expert and advocate in the care of kids with Morquio Syndrome.

“Many families, like Cooper’s, are seeking a center of excellence. They want to go to a place where the faculty has experience with their child’s condition. We now have a comprehensive team and can provide that reassurance. My goal is to help families feel comfortable staying right here in Colorado, with their established support networks, to receive world-class care for these rare skeletal conditions,” said Dr. White.

Funding Well-rounded Care

Cooper bears the scars of many of his surgeries, but some of the scars aren’t visible. With so many operations in his young life, Cooper faces not only physical challenges, but emotional challenges as well, given that the procedures are often painful and can be scary. Philanthropy can improve both surgical research and better outcomes, and fund more mental health providers focused on addressing some of the issues that kids who undergo numerous surgeries face.

“With kids like Cooper, who need multiple surgeries, we strive to take care of the whole patient and know there is a toll taken on their mental health, especially when they’re dealing with long term issues,” says Dr. White.

Surgeries are only successful when all of a patient’s needs—including their mental and emotional needs—are considered. Today, many surgical specialties lack the support of pediatric psychologists. Donors can join us to create a pediatric surgical psychology department, including psychologists, fellows, health navigators, and social workers, to ensure patients have adequate psychosocial supports.

The Center for Children’s Surgery seeks to deliver the best outcomes in the nation: better results, shorter recovery times, fewer side effects, and healthier futures. Philanthropy fuels innovation, the pursuit of novel and unconventional endeavors, and exceptional care. We look forward to further exploring with you how philanthropy will help to set a new standard for surgical care in Colorado and beyond.

Putting Together a World-class Center of Excellence

Committed, brilliant clinicians are key to providing world-class care, advancing cutting-edge research, and piloting one-of-a-kind surgical treatment options. Philanthropy equips institutions like Children’s Colorado with unique resources to attract the country’s top pediatric experts; support and retain them as their careers flourish; and develop the next generation of physicians and scientists.

Klane K. White, MD, MSc, the Rose Brown Chair in Pediatric Orthopedics, leads a pediatric orthopedic team defined by exceptional patient care, innovative research and a deeprooted commitment to scholarships and education. Dr. White is a leader in skeletal dysplasia, which is a group of genetic conditions that cause atypical growth in bones, joints and cartilage. Mild cases can cause small stature and shorter legs and arms. More severe cases of skeletal dysplasia can cause breathing problems and even death in infancy.

Becoming a Destination for Expertise

The Skeletal Dysplasia Program at Children’s Colorado has long been supported by strong orthopedics, radiology and genetics departments and an established diagnostic lab, all of which are integral to successfully diagnosing and treating children with skeletal dysplasia. Dr. White’s expertise increases the multidisciplinary program’s capacity to see more kids with these challenging diagnoses, drawing patients both regionally and from across the country, and he is intent on building a national and international destination center for skeletal dysplasia.

Dr. White knows firsthand what the families he cares for are going through; his own child was diagnosed with a skeletal dysplasia. “I have a unique understanding of what patients and families are up against, and that leads into every interaction. I know what happens outside of the clinic and after surgery and can empathize with the effects on daily life. It’s a full-time job at home beyond the medical component that I see in practice,” said Dr. White. Thanks to the philanthropy of the Brown family in creating his endowed chair, Dr. White can provide his team the resources they need to fund their academic ambitions and become globally recognized leaders in pediatric orthopedics. “Endowed funds empower our faculty to spend more time doing the work that promotes knowledge and surgical advancement, which in turn allows us to take better care of the children

Beating the Odds Thanks to Expert

Surgeons

Antonio’s journey at Children’s Hospital Colorado started well before he was born when his expectant parents went in for a routine 20-week ultrasound. Although a baby’s heart is only about the size of a thumbnail during this stage of development, prenatal imaging detected multiple complex congenital heart defects. Antonio’s tiny heart was positioned on the right side of his body instead of the left, was facing the wrong way and had a hole in the middle; he also had a double outlet right ventricle, which impacted a lot of his care. His parents were referred to the Colorado Fetal Care Center at Children's Colorado where they could give their little boy a fighting chance. There, the family met with fetal cardiology experts. Despite learning their son had additional heart defects, they felt hopeful.

“The fetal cardiology team reassured us they would do everything in their power to save our son, and Dr. James Jaggers, the heart surgeon, provided us with a lot of good options,” Antonio’s father, Tony recalls. “We cried happy tears for the first time.” Dr. Jaggers is the Barton-Elliman Chair in Pediatric Cardiothoracic Surgery.

we care for,” said White. Although funding from endowments helps advance our expertise and academic mission, sustainable support for research is still needed. Right now, many doctors in the Musculoskeletal Research Center, which Dr. White leads, are funding their own studies because they are passionate about the work they are doing and the care they are providing. Philanthropic support can be transformative in our clinicians’ quest for innovative research and allows Children’s Colorado to attract and retain the country’s top pediatric experts.

Known as “Baby Superman,” Antonio was delivered in October 2017 surrounded by more than a dozen experts. To everyone’s surprise and joy, he was healthy enough that he didn’t require immediate medical intervention.

“Perfectly Imbalanced”

“He came out looking pink not blue, which was good; it meant he was breathing ok,” Tony says. “One of his doctors described Antonio as ‘perfectly imbalanced,’ and I will never forget those words. He was beating the odds.”

The family stayed near Children’s Colorado at the Ronald McDonald House until Antonio was almost 1 month old. The family’s final appointment at Children’s Colorado before being discharged was on Halloween, and Antonio arrived dressed up in a tiny Superman costume. During the appointment, Antonio’s pulmonary artery suddenly closed, and he was rushed into emergency open-heart surgery.

Antonio, known as "Baby Superman," with his dad, Tony.

Dr. Klane White

After an uneventful recovery from surgery, the family was finally able to bring their son home to Albuquerque. Since then, they’ve traveled to Children’s Colorado every six months for monitoring. Due to the seriousness of Antonio’s condition, there have been multiple setbacks. To date, Antonio has undergone three more lifesaving open-heart surgeries – one of which required him being airlifted from New Mexico to Colorado when he was just 6 months old.

“There’s no such thing as minor heart surgery for us,” Antonio’s mother, Shelby, says. “But everyone at Children’s Colorado is always so confident and makes us feel okay.”

Antonio would greatly benefit from a heart transplant, which is too risky right now, but doctors haven’t ruled out the possibility in the future. In the meantime, the family relishes the everyday joys of life, determined to make the most of every moment.

“We’re so grateful to Children’s Colorado,” Shelby says. “We wouldn’t have Antonio without them.”

The preschooler is currently interested in dinosaurs, King Kong, Godzilla, the movie Frozen, and, of course, superheroes. Antonio also loves sports, especially watching football games with his dad and golfing with a tiny set of clubs that were donated to him. He also loves being a big brother to his sister, Maria, and his brand new baby brother, Ezekiel.

“Antonio is very active and loveable — he’s just full of love,” Tony says. “He just wants to go outside and play and have fun.”

Achieving the Best Surgical Outcomes

To be the nation’s premier child health surgical program, Children’s Colorado must achieve the best surgical outcomes by continuously elevating our surgical quality and safety goals.

Expansion of the surgical quality team is critical in creating a robust quality data infrastructure to house information, validate metrics, guide improvement efforts, and monitor outcome measures for divisions and surgeons. A wellrounded quality team includes surgical champions, such as clinical managers and data engineers, working to continually improve outcomes and equity of care. Under the direction of Cindy Barrett, MD, director of Surgical Quality and Safety, we plan to grow our dedicated surgical quality team to over 10 members — and philanthropic partnerships will be key to achieving this bold vision.

Saving Eve’s Eyesight

When Eve was 3 months old, her mom noticed her eyes were cloudier than usual. Since Eve had already been diagnosed as profoundly deaf, her parents were concerned that her vision — the primary way their daughter connected with her environment — could be lost as well.

After ruling out glaucoma and other conditions, Eve was diagnosed with trigeminal and corneal anesthesia — a condition in which the nerves that provide the face and eyes with sensation for touch and pain do not function properly. Without nerves to stimulate tears or blink in response to irritation, the cornea struggles to repair itself from dryness or injury. If not managed carefully, the condition can cause corneal ulcers, scarring and blindness.

A Genetic Eye Condition Diagnosis

Eve also struggled to eat and was delayed in her overall growth and development. Eventually Eve’s parents discovered that their little girl has an extremely rare genetic condition called pontine tegmental cap dysplasia (PTCD), which often results in hearing loss, vision problems, cognitive issues, feeding disorders, poor muscle control and slowed language development. Experts have reported only 40 cases of PTCD in the world.

A Sight-saving Surgery for PTCD

“I couldn’t accept my baby going blind,” said Athena , Eve's mom. “Because she is profoundly deaf, her eyes are how she experiences the world.”

Eve’s parents began managing her condition by giving her eye drops regularly. She also had multiple surgeries to partially fuse her eyelids together at the edges in order to help keep her eyes moist. Eve also wore protective glasses and, while she was a baby, splints on her arms to prevent her from injuring her eyes by poking them accidentally. She also received treatments on multiple occasions to help her eyes heal from multiple corneal ulcers.

When Eve was 4 years old, her ophthalmologist in California sent her parents an article that described a surgery called corneal neurotization. It would take a nerve out of her leg and tunnel it

“It was wonderful to find a doctor who was truly on our team," said Athena, Eve's mom.

between her cornea and a nearby sensory nerve in order to create feeling and sustain Eve’s vision. That same year, the family moved to Denver to receive specialized care from Emily McCourt, MD, Chief of Pediatric Ophthalmology and The Ponzio Family Chair for Pediatric Ophthalmology at Children’s Hospital Colorado, an expert in treating Eve’s condition with knowledge of this procedure.

Determined to Prevent Blindness

Over the next several years, Dr. McCourt was determined to save Eve’s vision. The experts on Children’s Colorado’s optometry team first fitted Eve with soft contact lenses that made an immediate difference in protecting her eyes and keeping them moist. Later, one of Dr. McCourt’s colleagues, Melissa Engle, OD, pediatric optometrist, gave Eve larger, hard lenses that made her condition much easier to manage. In 2020, when Eve was seven, Dr. McCourt trained with the doctor who created the surgery Athena had read about. Although only a handful of people in the country perform this surgery, Dr. McCourt assured Eve and Athena that this would be the best option for managing Eve’s eye condition.

The following April, Eve had the surgery on her right eye. Although it was hard for an active ten-year-old to sit still and recover for six weeks, testing of the nerve’s sensation in November 2021 confirmed that the surgery was a success. Eve doesn’t have full feeling in her right eye, but there is enough to protect the eye

against injuries and prevent the persistent ulcers that could have caused Eve to go blind.

Beating the Odds

In September 2022, Dr. McCourt’s team performed the surgery on Eve’s left eye. She continues to wear glasses and hard contact lenses to protect her eyes, and her reading vision is nearly normal. Eve attends the Rocky Mountain Deaf School where she has access to teachers and peers who are fluent in her native language, American Sign Language. While her parents can’t believe she’s already a middle schooler, Eve is excelling and loves to learn. In fact, Eve recently received an award for her school’s highest honor roll. Her resilience and determination are an inspiration to everyone who knows her.

Against long odds, Eve has retained her vision thanks to Dr. McCourt’s specialized expertise in her rare disease. She is now a curious, playful and energetic 12-year-old who can clearly see the world she’s exploring.

Since her family moved here in 2015, Eve’s multidisciplinary care at Children’s Colorado has included, among many other things, whole genome sequencing (WGS). WGS is now available at the Precision Medicine Institute, which works with physicians like Dr. McCourt within our Center for Children’s Surgery to provide the right care at the right time. Both of these teams rely on the generous support of donors to make this testing widely available and provide affordable treatment options for patients and families.

Big Gifts Supporting Big Ideas

The generous philanthropy of Craig Ponzio has helped Children’s Hospital Colorado promote excellence in pediatric healthcare and fuel the advancement of care for kids across the region for more than two decades.

“My involvement with Children’s Colorado, as a parent, has shown me how skilled and caring the staff is,” said Craig Ponzio. “Our family’s experiences also made me aware of the many opportunities that exist to help so many other children.”

To date Craig Ponzio has donated over $20 million to Children’s Colorado and endowed six chairs, including several that support the Center for Children’s Surgery. Craig’s generous funding of multiple endowed chairs has had an incredible impact on these programs and the kids and families they serve, enabling Children’s Colorado to attract and retain the best specialists in the field of pediatric medicine.

Duncan

“The impact this gift will have on children with blinding eye diseases will be remarkable. I am so grateful for this philanthropic support, which will help patients and families navigate a difficult diagnosis and create opportunities for research to cure childhood blindness.”

“Craig’s incredible generosity to pediatric urology has enabled us to have a clinical psychologist on our team, which improves our patients’ outcomes by enabling them to cope with the difficult challenges they live with every day. Likewise, the Surgeonin-Chief endowment provides the resources for our annual surgical research, innovation, and quality awards. These awards give surgeons the opportunity to develop new, innovative and safer surgical care, so that patients now and in the future benefit from the advances we are making. We have already seen these projects change care for the better.”

Andrea Bischoff, MD, The Ponzio Family Chair for Colorectal Surgery

“The impact Craig’s philanthropy has on children treated in the International Center for Colorectal and Urogenital Care at Children’s Colorado is immeasurable. His generosity has allowed the hospital to develop a team that leads the field in diagnosis, treatment and research, and sets our center apart from other programs around the globe.”

The chair was formerly held by Dr. Alberto Peña, a world-renowned leader in colorectal surgery. He invented a colorectal surgery technique that is now the standard of care around the world. Dr. Peña came to Children’s Colorado in February 2016 thanks to the support of Ponzio. He was the director of the International Center for Colorectal and Urogenital Care and built that program, which now serves patients from around the world. The relationship between the Ponzio family and Dr. Peña is special, and one that has fostered the advancement of care for many. Peña retired from medicine in 2022.

HOW WE’RE INVESTING TO ADVANCE PEDIATRIC SURGERY 41

New faculty hired since 2018

8th

Ranked 8th in the U.S. in inpatient surgical volumes among pediatric institutions

30K

On pace to perform 30,000 surgeries annually by 2030

Emily McCourt, MD, inaugural Ponzio Family Chair of Pediatric Ophthalmology

Wilcox, MD, inaugural Ponzio Family Chair in Pediatric Urology and The Ponzio Family Chair for the Surgeon-in-Chief

Dr. Alberto Peña

Giving to Support Care Closer to Home

“As a member of the Southern Colorado Advisory Committee and a Colorado Springs community member, I believed we needed a hospital and resources like Children’s Hospital Colorado in our community,” said Kate Faricy, a community advocate. “But it wasn’t until I was on the other side, a parent with a child needing care at the hospital, that I really understood how amazing Children’s Colorado is and how lucky we are to have its presence in southern Colorado.”

Kate’s husband, Ben Faricy, co-owns The Faricy Brothers Jeep dealership in Colorado Springs. In early 2022, their son, Henry, who was 12 at the time, was excessively fatigued, constantly thirsty and losing weight. A trip to the pediatrician led to an immediate diagnosis of type 1 diabetes and an emergency trip to Children’s Colorado, Colorado Springs. Henry quickly met the diabetes team, who has since been with him every step of the way.

The Faricys recently created an endowment that helps fund the diabetes clinic in southern Colorado that Henry attends on a quarterly basis. “We love contributing to an endowment that provides income on a regular basis, where the team can depend on money to focus on their impactful work, and hopefully someday find a cure for type 1 diabetes,” said Kate.

To learn more about donating through endowments visit GiveChildrensCO.org/endowments

Why I Give: The Brandon Johnson Family

Personal connections to Children’s Hospital Colorado inspired Brandon and Wendy Johnson to make several generous gifts. Brandon is the founder and CEO of Johnson Financial Group and has served on the Children’s Hospital Colorado Foundation Board of Trustees since 2014. Wendy is a former nurse in the Children’s Colorado NICU and has also served as a volunteer.

Their greatest philanthropic inspiration is their youngest daughter, 15-year-old Emily, who has been treated at the hospital her whole life, including undergoing cardiac surgery at the Heart Institute when she was 3 months old. After years of clinical visits for a variety of seemingly disconnected symptoms, one of Emily’s doctors, Kathryn Chatfield, MD, director of the hospital’s Cardiac Genetics Clinic, suggested Emily undergo genetic testing. The results of this testing answered many of the family’s longstanding questions about her lifelong health issues. The Johnsons and their doctors can now be proactive about Emily’s health and care moving forward, equipped with far more information and knowledge.

The Johnsons have been supporters of Children’s Colorado for 20 years, even before their daughter needed care, and were inspired to make a $2 million philanthropic commitment. As a trustee and young community leader, Brandon hopes to inspire others to support Children’s Colorado.

"We’re honored to partner with incredibly talented people and feel fortunate to be in the same community as Children’s Colorado, where kids come from around the world to get great care.”

- Brandon Johnson

From left: Wendy, Kaitlin, Emily and Brandon

From left: Millie, Ben, Kate, Henry and Owen Faricy

HEALING KIDS PRECISELY

From Testing to Diagnosis and Treatment, Precision Medicine Transforms Care for Kids with Rare Neurodegenerative Condition

At 5-year-old Connor’s appointment in the Neurogenetic Pediatric Clinic, Scott Demarest, MD, holds pieces of cereal in his palm. Dr. Demarest, a neurologist and the clinical director for the Children’s Hospital Colorado Precision Medicine Institute, gently coaxes the hungry little boy into using each of his hands — right, then left — to pick up these small bits of food, testing Connor’s fine motor skills.

genome sequencing allowed scientists to identify the genes responsible for this devastating condition. Today through genomic research, scientists know that more than 400 mutations on 13 different genes, labeled “ceroid lipofucinosis, neuronal” (CLN) genes, interact in a complex way to cause the 13 subtypes of pediatric Batten disease.

These CLN genes provide instructions to cells to make an enzyme that essentially serves as the brain’s garbage collector. Without this enzyme, waste builds up in the brain’s cells — and the cells eventually die. Batten disease, which is fatal, is believed to affect about 14,000 kids worldwide, including several hundred children in the U.S. Currently, the disease does not have a cure, and only one form of Batten disease — CLN2, Connor’s type — has an FDA-approved therapy.

Children with this condition often appear to be developing normally as babies and toddlers, but around age 3, the first signs of Batten disease typically start to appear. By the time most kids exhibit symptoms, they have already sustained serious damage to their brains and have begun losing the ability to do very basic functions, such as walk, talk and see. They’ve also likely had one or more seizures, which can cause significant harm and are often misdiagnosed as epilepsy of unknown origins, without identifying the underlying cause of the seizures.

For Connor, who has Batten disease, a rare neurodegenerative condition that affects the brain, vision and muscle control, the pincer grasping motion can be challenging. It requires precision and coordination – just like the medicine and care that make it possible for the pre-kindergartner to perform this task.

Precision Medicine Advances Care for Rare Disease with No Cure

Batten disease was first described by Dr. Frederik Batten in the early 1900s. Nearly 100 years later, human

That was the case for Dylan, now 7, another Batten disease patient who receives care at Children’s Colorado. Dylan’s mom, Michelle, said it took more than a year for the little boy, whose family lives in rural Nebraska, to be accurately diagnosed through genetic testing and to begin receiving treatment. During the year in which Dylan’s condition went undiagnosed at other hospitals and clinics, his health rapidly deteriorated, causing irreversible damage to his brain and body.

Connor’s parents, Stephanie and Brian, look on while a five-person multidisciplinary team — including Dr. Demarest; a clinical specialty coordinator; a pediatric neurology resident; a genetic counselor; and a neuropsychologist — observes their son’s interactions, movements and behaviors.

WHAT IS PRECISION MEDICINE?

Precision medicine is a paradigm shift in the way health care is implemented. It enables physicians to personalize care based on a patient’s genetics, environment, and lifestyle. Equipped with the information that precision medicine reveals, physicians can administer care tailored to a child’s genetic fingerprint. They can pinpoint the most effective treatments or direct patients to a targeted clinical trial. They can more accurately predict the chance of complications and modify treatment accordingly.

Precision medicine is beginning to change all of this. There is new hope for kids with Batten disease, thanks to earlier genomic testing, better and faster diagnoses, and a relatively new, innovative enzyme replacement therapy, called cerliponase alpha, discovered through precision medicine research.

For four young boys being treated at Children’s Colorado, including Connor, Dylan, and brothers Damion and Adriel, cerliponase alpha is slowing the neurodegeneration normally seen with their disease, not only extending their life expectancies, but enhancing the quality of their lives. Since Damion, now 11, was diagnosed with Batten disease, doctors screened his younger brother, Adriel, as a baby and diagnosed him with the same condition. Adriel started receiving cerliponase alpha at just 4 months old, before his symptoms even began, making him the youngest patient in the world to receive this therapy. He is now 15 months old, and Children’s Colorado doctors are hopeful that the onset of his Batten disease can be delayed significantly, perhaps even in time for a cure to be developed.

“Cerliponase alpha has completely altered the progression of CLN2 Batten disease,” said Dr. Demarest. “It is a complicated treatment to administer every two weeks directly into the fluid around the brain in fourhour infusions, but it has given hope and time back to CLN2 patients and families. Although this is one of the most complicated drugs there is to provide, it is also one of the most rewarding.”

The Power of an Early Diagnosis

When Connor was born, he seemed like a healthy baby. Then, several months after the red-headed, blue-eyed boy’s second birthday, Stephanie and Brian, Connor’s parents, started noticing developmental delays and impairments in his speech, vision and memory. And in December 2020, just one month before Connor’s third birthday, “everything came crashing down,” said Stephanie.

While she was driving, Connor had a seizure in his car seat. He stopped breathing and turned blue. Connor had multiple seizures in the weeks that followed. The couple took their toddler to Children’s Colorado,

Without the treatments that Connor has received since he was 3, he would likely be confined to a wheelchair. And his lifethreatening seizures would have continued.

where doctors quickly recommended genetic testing. Just 10 days later — and only 8 weeks after the little boy’s first neurologic episode – the couple learned that Connor had late infantile Batten disease, also known as CLN2. They were in Dr. Demarest’s office the next day. And one week later, Connor underwent surgery to install a shunt in his brain to provide a port for cerliponase alpha infusions, which replenish the critical enzyme the little boy’s body does not produce.

Connor was diagnosed much faster and earlier than many other kids with Batten disease and received therapy much more quickly as a result. Because of this, he does not exhibit nearly as many of the signs of his disease as would otherwise be expected; he is still walking, talking, climbing up on things and riding a bike. His seizures are much more infrequent and controlled.

“Connor is a true testament to the power of early diagnosis,” said Taylor Schwab, the neurology complex drugs team’s clinical specialty coordinator, a highly skilled role among the multidisciplinary caregivers serving Connor, responsible for coordinating schedules and many aspects of the infusion process. “I really hope that’s what we will see if younger and younger kids can be diagnosed and receive enzyme replacement therapy before they have any symptoms.”

INVESTING IN PRECISION MEDICINE

Elizabeth "Betsy" Searle, Chair of the Children's Hospital Foundation Board of Trustees, made a generous $5 million gift to expand precision medicine to treat and cure childhood cancer. Betsy's commitment carries on the legacy of her grandfather and greatgrandfather, who led a company dedicated to the development of life-changing medicines.

Donors Make Precision Medicine Advancements Possible

Due to the costs of genetic testing and the complexity of delivering medications like cerliponase alpha to patients, philanthropy plays a significant role in improving access to testing, the development of innovative therapies and better outcomes.

When donors give to our Precision Medicine Institute, they help ensure that more kids and families get the genetic testing they need and that new treatments can be discovered. And philanthropy can also help support unique positions like our nurse clinical specialty coordinators, who orchestrate the multifaceted care and medication administration that children and families need. “These roles are irreplaceable in my opinion,” said Michelle, Dylan’s mom.

“The impact of donors giving to these areas is huge,” said Stephanie, Connor’s mom. “It totally changes the quality of life for a child and their family. And it provides hope. I remember our diagnosis day, and if the next sentence after learning about this disease hadn’t been, ‘There’s a treatment, it’s available, and you can start next week,’ I would have been a puddle on the floor. Instead, I got to have hope because there is a treatment for my son’s rare disease. That means more play with his peers, more time doing the things he loves, more life and more time with us — isn’t that what we all want for our children?”

During a break in his long day of appointments, Connor runs, jumps and slides in the play area of the Children’s Colorado Multidisciplinary Clinic.

Genetic Testing Leads to New Discoveries

A genetic test can be a critical tool in helping a child battling disease, particularly rare ones. For patients and families, genetic tests can lead to a diagnosis, reduce treatment time, and alleviate the worry of the unknown. Genetic tests are also the foundation for future advances in precision medicine, care plans that are personalized to an individual patient.

Many patients are diagnosed with conditions that were previously unknown, and the rich data sets gathered from within their genomes enable the discovery of novel treatments. With every genetic test, Children’s Colorado learns more and expands available information. We can direct children toward clinical trials, and in some cases, launch new ones. We can better understand, treat and cure rare genetic disorders.

Currently, Children’s Colorado has one genetic sequencing machine, called NovaSeq. Genetic tests are run through this machine twice each week because analyzing multiple tests together achieves significant savings. For most children, this is an appropriate timeline. However, some kids’ lives depend on more rapid gene sequencing results.

The 2221 Society, a membership organization of entrepreneurial leaders that works to identify and fund projects to advance pediatric care at Children’s Colorado, has dedicated its 2023 fundraising to purchasing an additional sequencing platform to expand the hospital's genetic testing capabilities. Through an industry partnership, Children’s Colorado can triple testing capacity and enhance our ability to develop novel diagnoses and treatment options. Genetic testing time for patients in critical need would be cut from 24 hours to 10 to 12 hours — accelerating treatment plans for the most critically ill children.

Funding the Future of Medicine

Without a map, the journey to find the most effective treatment for a particular child or disease can stretch on. But when equipped with the specific, personalized information that genomic medicine reveals, physicians can administer targeted care, tailored to a child’s unique genetic fingerprint. They can pinpoint treatments most likely to help or harm a patient or direct a child to the right clinical trial. They can more accurately predict the chance of relapse, then modify the treatment accordingly.

Genomic medicine offers the promise of precise solutions that can be lifesaving. When looking for opportunities to support Children’s Colorado, the Koelbel Family Foundation wanted to invest in an area that would have a ripple effect across several areas of the hospital. The foundation found that philanthropy can fuel Children’s Colorado’s ability to unlock endless possibilities when it comes to caring for kids. “Children’s Colorado is unique because of the partnerships it has on the Anschutz Medical Campus. They‘re able to capture and analyze large amounts of data to inform the research being done by clinicians and impact the course of treatment for each individual child,” said Buz Koelbel, the president and CEO of Koelbel and Company and the Koelbel Family Foundation.

Children’s Colorado is setting the stage for a new era of personalized medicine. By joining like-minded donors who have also devoted resources to advance precision medicine at Children’s Colorado, the Koelbels’ complimentary investments in next-generation genomic sequencing, data analytics and targeted therapies will work together to achieve an even larger vision: building a system that treats all children precisely. With the exact right approach at the right time.

Left to right: Walt Koelbel, Dean Koelbel, Buz Koelbel and Carl Koelbel.

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Cutting-Edge Sickle Cell Disease Care

The Center for Cancer and Blood Disorders at Children’s Hospital Colorado is one of the best programs of its kind in the country and is consistently ranked in the top 10 by U.S. News and World Report. Our approach to treatment centers around precision medicine, which provides personalized care combined with best practices for every child we treat.

Pushing Past the Pain of Sickle Cell Disease

Children’s Colorado has a hemoglobin disorders (hemoglobinopathy) clinic that serves children from the Rocky Mountain region and beyond with expert care. Hemoglobinopathies are changes in the hemoglobin, the oxygen-carrying protein in our red blood cells. The most common hemoglobinopathies are thalassemia, which causes a patient to have less hemoglobin than normal, and sickle cell disease (SCD), which causes red blood cells to become abnormally shaped.

Kids like Imani depend on the team at Children’s Colorado to receive the best care possible. Imani has a form of SCD. SCD is a broad term for a group of inherited red blood cell disorders that reduces the ability of the protein hemoglobin to deliver oxygen to the body. Healthy red blood cells are round and soft and can easily move throughout the body’s small blood vessels. Children with SCD have red blood cells in the shape of a sickle, so their cells get stuck in blood vessels, blocking blood flow.

SCD can cause severe pain, an increase in serious infections, and life-threatening lung and brain damage. Excruciating pain — also called a “pain crisis” or “painful episode” — is the most common complication of SCD and the top cause for hospitalization. To prevent an episode, individuals with SCD must avoid high altitudes, such as going to the mountains and flying, and they can’t get too hot or too cold. Any of these stresses on the body can make the affected red blood cells turn from soft, flexible discs, to rigid, long sickle-shaped cells. Once that process starts, it is not reversible, so managing complications as soon as they begin is critical.

Not every hospital or clinic is able to take care of kids with sickle cell disease. It takes a very special, highly trained, multi-disciplinary team. For many kids, growing up in Denver means enjoying the great outdoors throughout all the seasons. But for 13-year-old Imani, any exposure to temperature extremes or high altitude can make her very sick. That means missing out on trips to the mountains, playing in the snow or taking refreshing dips in the pool on hot summer days. For now, Imani is focused on living her life as normally as possible. She enjoys dancing, playing basketball and traveling — especially to California and Las Vegas.

Treatments for SCD are limited to just four FDA-approved drugs. A lot of kids with SCD will receive blood transfusions, but the only proven potential cure for SCD is a bone marrow transplant, though that

Imani, 13

is only an option for children with very severe forms of SCD who have a related bone marrow donor that is an exact match — less than 1 in 5 children.

Newer treatments are being studied, including gene therapy to change the sickle hemoglobin, but these are early in their development and cannot be implemented fast enough for the children who need treatments and cures right now.

Advancing a Cure for Sickle Cell Disease

A recent national clinical trial led locally by Christopher McKinney, MD, director of the Hemoglobinopathy Program at Children’s Colorado, and other colleagues may broaden the parameters available to SCD patients. Results from a trial doing transplants with relatives’ bone marrow who were a 50% match with the patient could be available later this year.

For the next family who hears the words “your child has a blood disease” or “your child has cancer,” research cannot wait another day. Our patient families need your support now more than ever. Our renowned physician-scientists are pioneering new treatments and reshaping the world of pediatric cancer and blood disorders to make life better for kids. Join us to achieve our bold vision of every childhood lived to its full potential.

Leave a Legacy of Hope and Healing

Consider an estate gift to Children’s Hospital Colorado

Let us know about your plans to make a gift to Children’s Colorado through your will before the end of the year, and a $1,000 gift will be made in your honor, thanks to an anonymous donor.

It just takes a moment to let us know of your estate plans, and you can unlock $1,000 to help kids today!

OUR CENTER FOR CANCER AND BLOOD DISORDERS OFFERS:

• Second opinions for complex diagnoses

• 300+ clinical trials

• Precision medicine to provide the most advanced, targeted therapies

• A world-renowned research center from the laboratory bench to patients’ bedsides

• Access to the best treatment options available anywhere

CARE BEYOND CANCER:

• Every aspect of our care is tailored to kids, teens, and young adults to support their unique physical and emotional needs.

• When possible, we offer care as close to home as we can to make things a little easier for families.

• Our Wellness Program meets the unique needs of our patients and their families with psychologists, social workers, child life workers, art therapists, family navigators, and other support team members. Our goal is to treat the whole patient and the whole family.

Lily,

Two “Dogtors” Added to the Medical Dog Program

A growing body of evidence demonstrates that animal-assisted therapy can help patients cope with challenging medical (or hospital) encounters and support the healing process. Thanks to generous donors, the Children’s Hospital Colorado Medical Dog Program continues to grow. Kit and Salida, both yellow labs, recently joined the team.

Kit, who is 3 years old, serves patients in the Pediatric Mental Health Institute on the Anschutz Medical Campus in both inpatient and day treatment programs. Kit works alongside her primary handlers, Allie, a child life specialist, and Carmen, a yoga therapist, providing motivation, comfort, support, play and non-judgmental friendship while patients go through treatment. She works one-on-one with patients and in group settings. When she’s not with patients, Kit loves to go on walks and sniff every blade of grass and tree she passes. She loves squeaky toys, and when she’s on her breaks in the hospital dog park, she usually plays with a football that her handlers say has the loudest squeak imaginable.

Salida is 2 years old and will be supporting patients receiving care in our southern Colorado region. She joined the team in late March and will work alongside her primary handler, Luzie, a child life specialist, providing support to Children's Hospital Colorado, Colorado Springs pediatric units, including the emergency department, pediatric intensive care unit (PICU) and several other units. Additionally, Salida will support our pediatric patients receiving care at Children’s Colorado Telstar Therapy Care in Colorado Springs one day a week with her secondary handler, Shannon, another child life specialist. At Telstar, Salida and Shannon will support patients participating in day treatment programs within the Pediatric Mental Health Institute and will provide services to our talented team of outpatient therapists. Therapy services at this location include music, physical, occupational and rehabilitation therapies, sports medicine, audiology, speech and learning therapy. In Salida’s spare time you can find her chasing down tennis balls and enjoying endless belly rubs.

Donors Make a Doggone Difference

The Medical Dog Program at Children’s Colorado is supported by generous donations from our community that provide for the dogs’ ongoing care and help us add medical dogs to our team. You can learn more about supporting the Medical Dog Program here: Kit

Salida

Remembering a Revered Advocate for Children’s Health

The fields of pediatrics and public health lost a major figure when Stephen Berman, MD, a giant in the field of pediatrics, passed away in January. Dr. Berman taught at least three generations of pediatricians and was a beloved mentor, colleague and friend to many.

Dr. Berman was a pioneer in caring for kids, making healthcare more accessible for all, and forging agreements to open doors and create bridges to provide care from Colorado to South America (and beyond). “Dr. Berman was a longtime donor, partner, and active friend to the Foundation. Our world has lost one of its shining stars,” said Jen Darling, president and CEO of the Children’s Hospital Colorado Foundation. He was dedicated to Children’s Hospital Colorado and was a professor in the University of Colorado School of Medicine’s section of General Academic Pediatrics, where he held a faculty position beginning in 1978.

Children’s Colorado Helps Lead Spinal Muscular Atrophy Drug Clinical Trials

Pediatric neurologist Julie A. Parsons, MD, the Haberfeld Family Endowed Chair in Pediatric Neuromuscular Disorders, is continuing to change outcomes for children born with spinal muscular atrophy (SMA). SMA refers to a hereditary disease that can damage and kill specialized nerve cells in the brain and spinal cord, called motor neurons. Motor neurons control movement as well as speaking, breathing, and swallowing.

Since 2013, Dr. Parsons and the Children’s Colorado neuromuscular team have participated in clinical trials using nusinersen, including the most recent trials of the drug. Our team helped contribute to its approval by the FDA in 2016 for the treatment of SMA in pediatric and adult patients.

Dr. Parsons has been principal investigator for a multi-year, multi-center study named RESPOND, which evaluates the potential benefit of Spinraza, the brand name for nusinersen, in patients who were previously treated with onasemnogene abeparvovec (Zolgensma).

Zolgensma is designed to replace the missing gene that produces a critical protein called SMN. Spinraza treatment may provide an alternate, additional therapy for patients who have not benefited from gene therapy with Zolgensma. The study looks at the clinical outcomes and assesses the safety of dual therapy in this group of children with SMA.

Children’s Colorado currently has four patients enrolled in the RESPOND study.

Spinraza and other complex drugs often have life-changing results for patients and their families, but these medications and therapies can come with a high price tag. The Children's Colorado Government Affairs team advocates for laws and policies that improve kids’ health by providing fair and equitable care to all kids in our community and allowing access to all treatment options available. To learn more about our advocacy efforts, please visit www.childrenscolorado.org/community/child-health-advocacy/.

Dr. Julie Parsons

Photo: University of Colorado School of Medicine

Given the broad range of issues that need attention and the barriers to change, an effective child advocate must have patience, persistence and passion.”

- STEPHEN BERMAN, MD

Dr. Stephen Berman

Listeners Donate $1.3 Million in Alice Cares for Kids Radiothon

Alice 105.9 Cares for Kids Radiothon was broadcast live on Feb. 8 and 9, featuring stories of hope and healing from Children’s Hospital Colorado patients, families, and front-line caregivers. Thanks to our generous community and Alice 105.9 listeners, the 22nd annual radiothon raised $1.3 million. Since the inaugural event in 2001, radiothon has generated more than $25 million to support Children’s Colorado. This tremendous impact would not be possible without our long-standing partnership with the radio station and its parent company, Audacy Denver.

Several Children’s Colorado patient ambassadors shared stories of their health journeys, including Jackson, who has a genetic condition called CHARGE syndrome. When Jackson’s mom, Traci, was pregnant, she and her husband found out their baby boy would be born with half a heart. Kids with Jackson’s heart condition need a series of three heart surgeries to live past their teenage years. Jackson had his first surgery at 4 days old. Due to the complex nature of Jackson’s body and syndrome, doctors are working to find an alternative to a third surgery as they are concerned about his ability to recover.

Jackson, 10

Cardiac research is Jackson’s only hope. “My son won the medical lottery,” said Traci. “Now I need research to do its job and catch up to him, so that I can keep him past his teenage years. The clock is ticking.” Radiothon donations help fund Children’s Colorado’s mission, including critical advancements in research to offer hope for kids like Jackson.

Jackson, 10, joined his family to share his Children's Colorado journey on air.

Children's Colorado ambassador, Piper, 7, with her parents.

Porter, 8

Cooper, 10

Southern Colorado Donor Supports Medical Simulation

Colorado Springs and Pueblo Great Clips salons owned by Nevans Inc., have been dedicated supporters of Children’s Miracle Network Hospitals for the past 14 years. Every October, Great Clips stylists and managers raise money by educating their salon customers about the cause for which they are raising money — children's health. Over the past two years the money raised was used to provide funding for medical simulation exercises. Medical simulation allows for Children’s Colorado medical professionals to practice their specialties and identify problems in conditions that mimic the hospital environment.

“Expectations for good outcomes and minimized risk are the standard for our profession. Simulation allows us to train members of the medical team on the important steps, mechanics, and communication of patient care before ever having to approach a patient,” says Michael Wittkamp, MD, who works in the pediatric intensive care unit at Children’s Hospital Colorado, Colorado Springs.

Simulations may range from simpler tasks, such as best practices for wound dressing changes and lines, to highly complex, interdisciplinary treatments involving multiple care teams and hospital systems.

Supporting the local community is deeply rooted in the Nevans franchise, which is owned by Frank Evans. He says, “People give to people, not causes,” which highlights the culture Frank and his late wife, Jane, have created with his salon staff to engage their customers in supporting Children’s Colorado.

Over the years, funds raised by Great Clips have provided neonatal intensive care unit (NICU) equipment, a panoramic x-ray for the cleft palate clinic, infusion bays and rooms in the Center for Cancer and Blood Disorders, social work programs and most recently, the medical simulation program.

Since it started, the grassroots effort has raised over $600,000 for patients, families and team members at Children’s Colorado, Colorado Springs. All donated funds stay in southern Colorado and help Children’s Colorado provide care for kids and families closer to home.

Learn more about becoming a corporate partner

Children's Colorado team members taking part in medical simulation training.

Dr. Michael Wittkamp

Working to Improve Health Equity for All Kids

Q & A with Lalit Bajaj, MD, MPH, Chief Quality, Equity and Outcomes Officer

Dr. Bajaj has served many roles in his almost 27 years at Children’s Colorado. In his role as Chief Quality, Equity and Outcomes Officer, he focuses on the implementation and measurement of evidence-based care into practice, with an emphasis on improving the care of patients across the pediatric care continuum and promoting the growth of pediatric value-based care. This past year he added equity into his title to lead the expansion of the Department of Diversity, Health Equity and Inclusion. This group will function synergistically with his other focus areas to improve care for every child.

What do we mean by health equity?

A: The CDC defines health equity as the state in which everyone has a fair and just opportunity to attain their highest level of health. The social determinants of health, or the conditions in which we are born, live, learn, work, play, worship and age, account for 80% of health outcomes. Because many of these factors, like income and housing, are impacted by existing systems of oppression, they result in inequitable outcomes. We see this in our own patient population and have been working to directly address it for most of the past decade.

Why is it important for Children’s Colorado to address racial, ethnic and socioeconomic disparities in child health and healthcare?

A: Racial injustice and inequality widely persist today — including in health — and lead to widely discrepant outcomes for kids nationwide. As part of our commitment to health equity, Children’s Colorado is advancing programs and policies that reduce obstacles to health, such as poverty and discrimination, so that all kids have access to effective prevention measures, world-class care and the resources they need to live healthy, full lives.

Dr. Lalit Bajaj

What are some programs that are advancing this work?

A: Children’s Colorado’s Black Health Initiative is one such program. It aims to address the disproportionate rate of premature births and infant deaths experienced by Black parents and families.

Here in Colorado, according to data from the Colorado Department of Public Health and Environment (CDPHE), the mortality rate among Black infants in 2016 was more than double the rate of white infants. The infant mortality rate for Hispanic infants was nearly 50% higher than white infants. And Black Coloradans have higher preterm birth rates —11.6%, as compared to 8.2% among white, non-Hispanic births — and higher rates of low birthweight babies. Nationwide, Black mothers are also dying at three to four times the rate of non-Hispanic white mothers, according to the independent, nonpartisan policy institute Center for American Progress. Our program is designed to improve Black patient and family experiences and health outcomes. Led by members of our Black communities, we partner with those who share lived experiences to develop culturally responsive and focused programs and services intended to reduce the high incidence of anti-Black racism that contributes to premature births, health complications and deaths.

Donors ensure world-class care for every child who needs Children’s Colorado. Learn about investing in child health equity programs and services.

Addressing the Health and Social Needs of Children and Families

Resource Connect at Children’s Hospital Colorado is one of the few pediatric programs of its kind in the country to robustly address social determinants of health (SDoH) by connecting families in a clinical healthcare setting to the social services they need. Medical care in a clinical setting accounts for only 20% of what influences kids’ overall health and health outcomes. The majority of children’s health is impacted by social determinants of health, which include things like:

• Neighborhood and built environments, such as housing, transportation, playgrounds and air quality

• Economic factors, such as employment, income and access to foods

• Social and community context and culture, such as civic engagement, discrimination and racism

• Education, such as level of schooling, literacy, language fluency and early childhood education

All patients and families seen at the Children’s Colorado Health Pavilion are eligible to receive Resource Connect services. Patients and families seen by medical providers, dentists and mental health therapists at the Health Pavilion can be either screened for eight resource needs or referred to Resource Connect by a social worker or a community health navigator. Within Resource Connect there’s a network of community health navigators and partners who are ready to provide wraparound care and support. This is all accomplished through robust partnerships between Children’s Hospital Colorado and community-based organizations. Patients and families can access Resource Connect the same day and in the same building after their clinic visit.

Resource Connect anchors Children’s Colorado’s strategy for population health: delivering healthcare that lasts beyond a clinic visit and enhances care for patients and families by creating a centralized place to access their most common social needs. Since opening in 2019, more than 4,500 families have been referred to Resource Connect, helping to realize Children’s Colorado’s vision and contribution to an ongoing, nationwide shift towards whole-child health.

Donors have helped make all of this possible. Resource Connect could not have been launched without significant investments from our supporters, since insurance does not cover any of the services the program provides. With help from our community, Children's Colorado is demonstrating that this innovative model of wholechild care can create better outcomes for kids and families, ultimately at a lower long-term cost.

Child Health Clinic patient, Jade, 16 months old, and her mother, Xochitl.

The Path to Whole-child Health

Well-child Visit

As a toddler, Mateo comes to the Child Health Clinic at the Child Health Pavilion for a well-child visit with his mom and attends his car seat appointment. There, his mom completes a universal psychosocial screening tool, which includes eight resource needs questions. Mateo's family screens “positive” for food, energy and benefits, such as Medicaid, meaning they need assistance in accessing these resources.

Community Health Navigator Referral

Mateo and his mom meet with a community health navigator (CHN), who works with the family to understand their needs, and the CHN refers the family to Resource Connect, located in the same building where they are — and open for same-day appointments.

Health Coverage, Nutrition and Energy Assistance

At Resource Connect, Mateo's mom receives help applying for and getting enrolled in Medicaid; assistance with a Supplemental Nutrition Assistance Program (SNAP) application for the family; and support from Energy Outreach Colorado, where the family qualifies for the Low-income Energy Assistance Program (LEAP), which helps make their home’s energy more affordable.

Healthy Roots Food Clinic

From there, with a prescription to the Healthy Roots Food Clinic (HRFC), Mateo's mom picks up food from a menu of items of their choice that meets their family’s taste and nutritional needs. Based on the principle of Food as Medicine and the belief that hunger is a health issue, the HRFC provides nutritious food – including some fresh produce sourced from Children’s Colorado’s very own Healthy Roots Garden; guidance on community resources and basic nutrition; and safe food education support.

Building the Sustainability Plan

Mateo and his family’s experience informs how Children’s Colorado scales, spreads and continues to build the case for our model to address social determinants of health and gather outcomes data so these services and supports can eventually be reimbursable through insurance.

Food Clinic at Crawford Elementary School

As Mateo grows, his family accesses the new food clinic at his school, which was launched in partnership with Children’s Colorado.

Three Decades of Riding for Kids

This year marks the 34th year of the Courage Classic. Jane Freeman, a former nurse practitioner at Children’s Hospital Colorado has been at every single cycling tour. She belongs to a very special group of Courage Classic riders, called Founders, who have participated in every tour since the event’s inception. In 1989, she started at Children’s Colorado as a nurse specializing in surgery in the Neuroscience Institute. By the time she retired in June 2020, she was a nurse practitioner in the Neurosurgery Department. One of Freeman’s favorite parts about the Courage Classic is seeing all the families and patients, including the kids — some now adults — that she cared for during her career. “I have always been totally invested in helping these children,” said Freeman. As a self-proclaimed “fair weather cyclist,” Freeman says the Courage Classic is challenging, “but when I think of the mountains these kids have to climb every day, the challenge of riding the Courage Classic is easy.” Freeman has always felt immense pride in being a team member at Children’s Colorado and even came out of retirement to help with the hospital’s COVID-19 vaccine rollout in 2021. She continues to volunteer at Children's Colorado. Click our QR code to sign up for the 2023 Courage Classic and join Jane in conquering mountains and raising millions, all for kids!

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2023

AUGUST 7

AUGUST 25

OCTOBER 7

New Location! Gaylord Rockies Resort

Learn more about our events

“When I think of the mountains these kids have to climb every day, the challenge of riding the Courage Classic is easy.”

SIGNUP FOR THE COURAGE CLASSIC

Jane Freeman riding in a recent Courage Classic.

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