Changemakers Magazine - Winter 2021

CHANGEMAKERS Winter 2021

Could precision medicine be the key to curing pediatric cancer? page 8

INSIDE Day in the Life of a Child Life Specialist, page 5 Youth in Crisis: A Patient’s Personal Essay, page 14 One Family’s Mission to Find a Cure for MS, page 17

Dear Friend,

CONTENTS

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The holiday season is officially upon us, and as we prepare for this special time of giving and gratitude, I couldn’t help but wonder: What wishes would we find on our patient families’ holiday lists?

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For most of these brave families, I know that their hopes go far beyond brightly wrapped gifts. Instead, they wish that their son or daughter could be well enough to leave the hospital and spend the holidays at home. They wish that doctors could find a cure for their child’s illness. And for many, their greatest wish is simply to have a healthy kid — one who is able to go to school, play with friends and enjoy the simple pleasures of childhood.

Children’s Hospital Colorado In the News

Panda Express Makes Transformational Gift

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A Day in the Life of a Child Life Specialist

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Unlocking New Cures Through Precision Medicine Research

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How The 2221 Society is Changing Children's Lives

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In My Own Words: A Mental Health Patient’s Personal Essay

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These are the difficult realities that our patient families face every day. And yet I have hope that, with your help, these families’ wishes can someday come true.

Asher Children's Hospital Colorado patient

Children’s Hospital Colorado is ranked among the top 10 best pediatric hospitals in the country, and our outcomes are among the best. We’re also on the cutting edge of research for new treatments that are improving quality of life and survival rates for children with a wide range of pediatric diseases. In the pages that follow, you will read about some of the exciting medical breakthroughs being led by our team.

While we are proud of our many successes, the truth is, none of our work would be possible without the community’s support. Children’s Colorado is a nonprofit, and it’s only because of donors like you that our team can continually provide worldclass care, research advancements and critical support services to hundreds of thousands of patients each year.

Here, philanthropy is the catalyst for change — the fuel that advances new innovations and therapies that are saving and changing lives. It’s also the accelerant for our important work of healing kids and helping families — work that we’ve been doing for more than a century. Simply put, philanthropy is the key to our success and the driver of new possibilities as we look to the future.

I am so grateful for the supporters whose generosity has been unceasing during this tumultuous time. It is truly because of you that our patient families can hold onto the hope of a healthier future ahead.

Wishing you a wonderful holiday season,

One Family’s Mission to Find a Cure for MS

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Event Recap: Philanthropy on the Farm

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

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: Megan Lane • Art Direction: John LeCrone Contributors: Erin Bodine, Jessica Ennis Design: Claro Creative Group • Printing: Publication Printers Financial and other information about Children’s Hospital Colorado Foundation’s purpose, programs and activities can be obtained by contacting 720-777-1700 or info@childrenscoloradofoundation.org. For a complete list of state disclosure requirements, visit www. supportchildrenscolorado.org/disclosures. To opt out of mailings from Children’s Hospital Colorado Foundation, please call 720-777-1700.

Note: Some photographs in this publication were taken prior to COVID-19 restrictions.

NEWS & UPDATES

Expanding Care for Southern Colorado Kids In 2021, Children’s Hospital Colorado, Colorado Springs marked its second anniversary of providing expert pediatric care for the region’s families. Now, with the help of donors, the southern Colorado team is working to expand behavioral health services to more kids. Construction will soon begin on a new 25,000+-square-foot outpatient facility in Colorado Springs. Expected to open in fall 2022, the site will offer counseling services and a partial hospitalization program, where patients can do several hours of intensive therapy during the day and then spend the night at home with their families. The facility will also offer developmental pediatrics; audiology and speech services; sports medicine; and occupational, physical and rehabilitation therapy.

RESEARCH ROUND-UP

Patients Get a Super Surprise Thanks to the Aurora Police Department, Children’s Hospital Colorado patients recently got a special surprise to brighten their hospital stay. Members of the department’s SWAT team rappelled down the side of the hospital in full view of patient rooms while dressed as superheroes, such as Batman, Spiderman and Captain America. This marks the seventh consecutive year that the department’s SWAT team has brought joy to patients on the Anschutz Medical Campus through this “super” event.

Medical Dog Program Grows by Eight Paws

Ruffles, a Children's Colorado Medical Dog

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Sibling pups Pringle and Ruffles recently joined Children’s Hospital Colorado’s highly trained team of therapy dogs. Ruffles is helping patients at the Center for Cancer and Blood Disorders on the Anschutz Medical Campus, and Pringle is headquartered at our North Campus location in Broomfield, Colo. Medical dogs provide a calm presence to help patients cope with the stress of an illness, injury or medical procedure. Support from donors like The KONG Company, a maker of pet toys, provided the funding for our new medical dogs, enabling their expert handlers to provide these valuable support services to more kids!

CHANGEMAKERS

With more than 400 active clinical studies underway, your support fuels groundbreaking new discoveries that are transforming the future of pediatric medicine. Here are just a few of the research breakthroughs that are being pioneered at Children’s Hospital Colorado.

A Sickle Cell Disease Breakthrough

Studying How COVID-19 Affects Kids

Sickle cell disease is a debilitating condition that affects tens of thousands of kids. Typically, a patient’s only hope for living a “normal” life is a bone marrow transplant, but finding a match is very difficult. However, a recent clinical trial at Children’s Colorado has identified a trailblazing new treatment that doesn’t require a perfect donor match for a transplant — and so far, all the patients in the trial have been cured. “This opens up a cure to so many children with sickle cell disease all over the country,” said Rachelle Nuss, MD, director of the Sickle Cell Program at Children’s Colorado.

Thanks to donors who supported our COVID-19 Relief Fund, Children’s Colorado has mounted a massive ongoing response to the pandemic.

Children’s Colorado is the only site in the region to host a clinical trial for the Pfizer-BioNTech COVID-19 vaccine for children ages 5 to 11. The health system also has more than 20 other COVID-19-related research collaborations underway to study how the disease — and the related multisystem inflammatory syndrome (MIS-C) — affect children.

What’s more, Children’s Colorado has administered the COVID-19 vaccine to more than 50,000 people, including health care workers, patient families and teachers from across the state.

Preventing Asthma Through Research Children’s Colorado was recently awarded a $2.3 million National Institutes of Health research grant for a first-of-its-kind long-term pediatric asthma study. Over the next seven years, Children’s Colorado will follow young children who come into the emergency room with asthma attacks or asthma-like symptoms with the goal of identifying — and reducing — asthma risk factors. Children’s Colorado’s Emergency Department gets about 1,000 visits for severe asthma every year, making it an ideal place for this pioneering research. “Understanding the early life differences in children who go on to develop chronic asthma can help us prevent asthma in the future,” said Nidhya Navanandan, MD, a co-investigator of the study and pediatric emergency medicine specialist at Children’s Colorado.

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Panda Express® Makes Largest Corporate Gift in Hospital’s History Donation Will Fund an In-Hospital STEAM Makerspace Panda Express® has committed to a gift of $8.3 million to Children’s Hospital Colorado over the next 10 years through its Panda Cares Foundation, the philanthropic arm of Panda Restaurant Group. This multi-million-dollar gift is the largest corporate commitment in the history of Children’s Hospital Colorado Foundation.

By supporting the establishment of a Panda Cares® Center of Hope at Children’s Colorado, this generous gift will create a new Science, Technology, Engineering, Arts and Mathematics (STEAM) makerspace where patients and families can create, learn and explore. The Panda Cares Center® of Hope is designed to provide a safe and comforting place where kids can be kids again. With computers, 3D printers, green screens, laser cutters, digital instruments and more, the makerspace will promote healing while addressing patients’ mental and emotional needs. The gift will also fund mobile makerspace carts, so that patients who cannot leave their hospital rooms can still enjoy these special activities.

This extraordinary gift will allow our Child Life teams to provide kids with a space to be creative, inspired and inventive as part of our healing environment.”

A Day in the Life of a Child Life Specialist

Foster Rosemund is a Certified Child Life Specialist at Children’s Hospital Colorado. As part of the Child Life team, she works in the hospital’s cardiac units, helping patient families facing difficult diagnoses to cope. Here, Foster shares a typical day on the job.

– JENNIFER ROE DARLING P resident and CEO Children’s Hospital Colorado Foundation The Panda Cares® Center of Hope is a nationwide initiative in partnership with Children’s Miracle Network Hospitals (CMNH). Thanks to donations from Panda Express® guests and associates, these Centers of Hope have been established at pediatric hospitals across the country. Since partnering with CMNH in 2007, Panda Express® has raised more than $100 million for numerous pediatric hospitals.

“On behalf of all the patients and families we serve, we are so grateful for Panda Express® and the Panda Cares Foundation for their incredible generosity and commitment to our mission,” said Darling.

$8.3M

$100M+

14 years

40+

New gift commitment from Panda Express® to Children’s Colorado

Dollars raised to date by Panda Express® for pediatric hospitals nationwide

How long the Panda Cares Foundation has been partnering with CMNH

Child life specialists on staff across all Children’s Colorado locations

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CHANGEMAKERS

Foster Rosemund interacts with one of her patients in the cardiac ICU

7:58am

I arrive at Children’s Hospital Colorado for my 8 a.m. shift. I always start my day by checking the patient census and seeing if there are any newly admitted patients. Some days we have upwards of 40 kids in our cardiac units, but today there are about 30. From there, I check in with the nurses, then I prioritize and plan out my day.

8:25am

I begin my day by doing a medical play session with a 4-year-old little boy who will soon have surgery. Sometimes I’m referred to as “the toy lady,” but I don’t think people realize how much thought goes into every detail of my play sessions! For me, every “toy” is a tool that allows me to bring up specific conversations to help the child prepare, cope, understand and process.

For this particular patient, I bring in some of the equipment that will be used in his surgery, as well as a large teaching doll. We talk about how doctors will give him medicine to help him to fall asleep, so he won’t wake up while they’re fixing his heart (this can be a scary concept for an imaginative child!). We put a pretend oxygen mask on the doll’s face, and I explain the surgery in simple terms. I leave feeling hopeful that our play session helped to ease his fears. continued >

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A Day in the Life of a Child Life Specialist 9:45am

Next, I head to visit a family whose 6-month-old daughter has been in the hospital for two months awaiting a heart transplant.

I learned from a nurse that the patient’s older sister is having a hard time. She’s only 2 and doesn’t understand why her parents are always at the hospital. It’s hard to explain a complex cardiac diagnosis to siblings — especially toddlers — so I made the family a homemade book to take home to their older daughter. The book uses simple, ageappropriate terms to explain how we are taking care of her sister’s heart. I even personalized the story with the family’s names and pictures of the hospital. The mom is very grateful. She tells me she’s been struggling to help her older child to understand and feel involved, and she is hopeful that this book will help.

10:20am

I stop by to visit a family who was recently admitted. Their newborn baby was diagnosed with a heart defect hours after birth. This was totally unexpected, and I can tell they feel overwhelmed. In these situations, I do what I can to create a more normal, soothing environment.

Hospital rooms can be noisy, with lots of machines and beeping, so I give the parents a noise machine to help drown out the sound. I also offer them a mobile to put over their hospital crib and an infant rocker to help soothe the baby. These might seem like little things, but for a family that’s totally out of their element, they mean a lot. Plus, it can help to ease the transition back to home when the baby leaves the hospital!

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CHANGEMAKERS

11:00am

One of our long-term patients has finally been matched to a donor heart! Her transplant is scheduled for this afternoon.

She’s 5 years old, and she has severe separation anxiety, so her mom had asked if I would help to keep her calm when it’s time to take her to the OR. I scrub up and head to the patient’s room. I’ve formed a strong bond with this little girl over her nine-week hospitalization, and she lights up when she sees me. When it’s time to go, she starts to get upset, but I improvise and start singing songs from "Frozen," her favorite movie. Before I know it, the entire operating team is belting out “Let it Go” right along with me. The little girl’s face breaks into a smile, which remains on her face right up until the moment she falls asleep. I hope her surgery goes well!

3:00pm

One of the hardest parts of my job is when we lose a patient. It’s a reality of working with cardiac patients, but it never gets any easier. This morning, I was very sad to learn that one of our infant patients is not expected to survive — the doctors are simply out of options.

The family has already met with our bereavement and spiritual care teams, but I want to do something for the family as well. I softly knock on their door and ask if they’d like to create a footprint artwork with their baby. They say yes, and I carefully take out my supplies and help the parents to paint their baby’s tiny feet. Together, we gently press her lavender footprints onto a paper that I will turn into a framed artwork.

These moments are truly sacred for me. In the midst of an impossibly difficult situation, I hope that I’m creating a special memory that this family will hold onto for many years to come.

4:05pm

1:20pm

After grabbing a quick lunch, I head back to the cardiac ICU to assist a patient who’s about to get a peripherally inserted central catheter, also known as a PICC line. A PICC line is a bit like an IV, but it’s more invasive.

It has to be inserted through your arm and passed through to the veins near the heart. This allows caregivers to administer strong medications directly to the heart, but getting a PICC line is no fun.

This patient is only 8, but he wants to know step-by-step what will happen.

I explain everything and together we come up with a coping plan. He chooses a movie and asks me to help distract him. When his doctor arrives, the patient seems calm as he watches "Minions". It takes two tries to get the line placed — and it’s definitely painful — but I can tell that having a plan in place made a huge difference in this child’s comfort level.

4:30pm

I drop off a toy for a patient on my way back to my office. I’m still holding the footprint artwork in my other hand as I hand over a Barbie to a delighted 6 year old, who insists on giving me a quick bedside manicure.

Sometimes it’s strange that these joyful and painful moments are both equally important parts of my job. That’s why I’m so grateful to have my incredible Child Life team.

We always support one another through the hard days.

My shift is ending, but it often feels like my work is never truly “done.”

Even on a packed day, I always wish I could do more for our patients! I add a few notes to some charts and head home, feeling tired yet grateful for this rewarding job that I love so much.

HELP KIDS COPE Thanks to donors, the Child Life team’s services are offered free-of-charge for patient families. To make a gift to Child Life, call 720-777-1700 or email info@childrenscoloradofoundation.org.

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A Vision for

How Genomic Testing Changed the Treatment Trajectory for Ramon

PRECISION

Intuitively, Mirian just knew that there was something wrong with her son, Ramon. For weeks, he had complained of headaches and vision changes, leading the family to bring him in for testing at Children’s Hospital Colorado. Still, nothing could prepare her for news that her 15-year-old child had a softballsized mass in the left side of his brain.

How Children’s Hospital Colorado is Using Genomics to Transform Care for Kids

“I felt like my whole world crumbled,” Mirian said.

It’s been 20 years since scientists with the Human Genome Project completed their groundbreaking work to map out the complex code behind human life. It took an international team of researchers 10 years and nearly $3 billion dollars to identify and catalogue the unique variations encoded in human DNA, but their findings would forever change the future of medical research.

Ramon immediately underwent surgery to remove the mass, and his care team, including neuro-oncologist Adam Green, MD, sent the tumor to the Children’s Colorado lab for testing. But the pathology team was puzzled by the results.

“Determining the tumor type proved very challenging,” said Dr. Green. “It didn’t quite fit any of the more common diagnoses.”

Today, that same genetic mapping can be completed in under 48 hours. With a better understanding of the human genome and the driving forces behind an individual’s genetic variations, a new approach to health care has evolved — known as precision medicine — and it’s changing the way patients are diagnosed and treated at Children’s Hospital Colorado and health care institutions worldwide.

“The pace of discovery has really escalated in the past decade,” says Alisa Gaskell, PhD, Scientific Director of Precision Medicine at Children’s Colorado. “We now have the ability to scan the full genome with the most advanced technologies, and then use that information to inform health care decisions in a patient-centered manner. That’s a significant shift from the traditional disease- or symptom-centric approach.”

By capturing the immense data available within a person’s genome and leveraging decades of accumulated knowledge, not only can scientists identify the hundreds of thousands of gene variations present within every individual, but they are also better equipped to distinguish harmless gene alterations from rare, disease-causing ones — all in a matter of days versus months. This has become a gamechanger, especially for time-critical cases in which quick intervention can make all the difference.

An intelligently designed precision medicine program can transform the current health care paradigm. By leveraging information on a patient’s disease-driving genetic variants, doctors could direct a family to the right clinical trial or recommend the best-possible drug combination to optimize health outcomes.

Dr. Alisa Gaskell (right)

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CHANGEMAKERS

“Genomic medicine offers the promise of more precise solutions,” Dr. Gaskell says. “This could mean a future in which every child’s treatment is uniquely tailored to ensure maximum efficacy and minimal side effects.” continued on page 10 >

Standard pathology tests were unclear but showed that Ramon could have a cancerous tumor called an ependymoma. In addition to surgery, the typical treatment protocol for ependymoma tumors includes chemotherapy and radiation. While these therapies offer patients the best possible chance of survival, they also come with risks.

“Long-term risks can include secondary cancers and infertility,” said Dr. Green.

“We were preparing the family for that, but because we were still in doubt as to Ramon’s exact diagnosis, we decided to hold off on chemo and radiation.”

Dr. Green and the pathology team opted to send a sample of Ramon’s tumor to an external lab for more advanced genetic testing. When the results came back, doctors were very surprised to learn that Ramon’s tumor was actually a non-cancerous schwannoma.

“The location of this tumor type within his brain was very atypical, but the testing confirmed it,” said Dr. Green.

Genetic testing gave Ramon a more precise diagnosis, which meant less invasive treatment for his brain tumor

The great news for Ramon is that schwannoma tumors typically do not require chemotherapy or radiation.

“We were able to tell the family that Ramon would only require MRI monitoring,” said Dr. Green. “He’s already had follow-up scans, and they look fine, indicating that this was the right diagnosis.”

Dr. Green says this is just one example of the tremendous potential that genetic sequencing can have in ensuring the right diagnosis and treatment.

“As our capabilities to do next generation testing expand, we’ll be able to a make more precise diagnoses,” Dr. Green says. “We can better understand what’s driving these tumors to grow and identify their weaknesses.

That means we can treat tumors as precisely as possible without exposing patients to unnecessary risks.”

For families like Ramon’s, that precision made all the difference in the world.

“I really thank the doctor for having made those decisions with my son,” said Mirian.

“ There will be a time when genomic testing permeates the everyday practice of medicine for children everywhere.”

DR. SCOTT DEMAREST Clinical Director of Precision Medicine at Children’s Colorado

“Philanthropy has been instrumental in expanding our precision medicine program to help more patients,” says Gregor Stoddard, Director of Precision Medicine at Children’s Colorado. “Donors are now helping us to take this knowledge and technology to the next level to transform the everyday practice of pediatric medicine.”

Hope in Targeted Cancer Therapies Genomics Within Reach For years, the incredible costs of DNA sequencing limited the potential of this groundbreaking technology to theoretical applications. But thanks to research being pioneered at Children’s Colorado and other pediatric medical institutions, that’s beginning to change.

In recent years, revolutionary improvements in sequencing technologies have reduced the cost of genomic testing from billions of dollars for the first draft of the genome to less than a thousand dollars. These advances are primarily driven by the accessibility of Next Generation Sequencing (NGS) — a modern DNA sequencing technology used to decode the genome in a more cost-effective and efficient manner.

“With NGS, we’re now able to cast the net wider and evaluate more of the patient’s genome to diagnose previously undiagnosable conditions,” says Scott Demarest, MD, Clinical Director of Precision Medicine at Children’s Colorado. “Families who have spent tens of thousands of dollars and years seeking answers — modern genomics can now provide an accurate diagnosis in a matter of days.”

Pediatric oncology is one of the most promising areas of precision medicine discovery at Children’s Colorado, where doctors are using genomics to deliver customized treatments that target malignant cells with laser-like precision.

Most of the drugs currently used to treat pediatric cancers were originally developed for adult cancers more than 50 years ago. These treatments, including chemotherapy and radiation, can effectively kill most types of cancer, but they also wipe out the body’s “good” cells in the process and can cause long-term side effects.

As Director of Clinical Research at the Children’s Colorado Center for Cancer and Blood Disorders, Dr. Meg Macy, Hoover Family Endowed Chair for Cancer Research and Innovation, has dedicated her career to pediatric oncology research. She also leads the Experimental Therapeutics Program, which utilizes genetic sequencing to develop novel treatments for children with complex or recurring cancers.

“With precision medicine, we’re taking a targeted approach,” explains Dr. Macy. “It’s studying each

CHANGEMAKERS

Rather than using a “one-drug-fits-all” approach, Dr. Macy’s lab uses information about the patient’s unique genetic makeup, cancer type, tumor mutation and other factors to predict which treatment or drug combination will work best.

“We can try to see if there’s a gene that’s making the cancer cells grow that we can turn off. Or we can try to make the chemo more effective by targeting a specific pathway that’s enabling the cancer cells to survive,” says Dr. Macy. “We’re seeing some real wins, because we’re figuring out these molecular fusions and mutations, and we can actually target them.”

A New Paradigm A successful precision medicine program requires a new paradigm — not to mention the right tools, technologies and team. Through focused investments in genomics and precision medicine, donors can help build a new system of care at Children’s Colorado — one that catalyzes extraordinary discoveries that improve the health of children everywhere.

“We have a vision to build a unique precision medicine program that revolutionizes the way we care for children,” Dr. Demarest says. “There has never been a more exciting time to be in medicine.”

Children’s Colorado has already begun to strategically build the underlying infrastructure and systems needed to leverage its precision medicine expertise, while maximizing synergies between its research and clinical programs. In the coming years, Children’s Colorado plans to augment its modeling, profiling, and data analysis capabilities to translate sequencing results into real-time decisions and discoveries.

Although pediatric genomics is still in its infancy, children’s hospitals nationwide are already investing significant resources Dr. Scott Demarest in developing their precision medicine capabilities. Children’s Colorado launched its own precision medicine program in 2020 to bring genomic mapping within reach of everyday clinical applications and care decisions. Today, with the support of donors, Children’s Colorado is broadening the use of genomics to diagnose children faster, treat them more effectively and — in remarkable cases — develop individually tailored cures that could mitigate the effects of a genetic disease.

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patient’s cancer cells and finding the weakness. If I can find a therapy that’s less toxic but more effective, then we can improve survival rates without all the side effects.”

“To have a robust dataset is not enough,” Dr. Demarest explains. “We must be able to use our sequencing data to improve care and advance more effective treatments as quickly as possible.”

Enhanced data profiling means that physicians can view — in real time — how other patients with similar genetic profiles and tumors have responded to different treatments. It also means Children’s Colorado Dr. Meg Macy with Myers, one of her patients

can analyze the unique factors that cause therapies to be toxic or effective, nimbly adjust treatments as needed and proactively establish contingency plans — all based on a patient’s genetic profile.

Armed with the precious information provided by genetic testing, researchers can also design better clinical trials, while ensuring patients are being directed to the right trials to maximize their chances of success. Investments in these smarter, more precise research projects and trials will accelerate the discovery and deployment of novel therapies for patients worldwide.

Pediatric medical research is significantly underfunded nationwide, so donors are the driving force behind this new state-of-the-art system for enhanced sequencing and results. With the support of generous philanthropists, Children’s Colorado plans to begin rolling out faster, more cost-effective genomic testing as the standard of care for all oncology patients — and eventually to patients across all hospital service lines.

“By integrating genomic medicine into the care of children, we can give the right kids the right treatments,” Dr. Demarest says. “Ultimately, this means better outcomes, higher survival rates and greater hope for families.”

Interested in Investing in Precision Medicine?

We have several urgent and exciting philanthropic opportunities to improve the lives of young patients through precision medicine.

Email info@childrenscoloradofoundation.org or call 720-777-1700 to learn more.

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The 2221 Society: Honoring the Past, Transforming the Future In 1909, a group of entrepreneurial nurses recognized the community’s need for better medical services for local children — and so, after moving care from a tent hospital in Denver's City Park to a house at 2221 Downing Street, the first permanent location of Children's Hospital Colorado was created.

More than a century later, another group of entrepreneurial, dynamic Denver leaders recognized the need for community support to advance key programs at Children’s Colorado. And so, The 2221 Society was born.

The 2221 Society supports important Children’s Colorado initiatives like cutting-edge research, treatment, therapy programs, education and advocacy.

In less than four years, the group has raised nearly $2 million.

In addition to serving as hospital champions, recruiting new members and executing events, 2221 Society members are asked to make a personal financial contribution or help fundraise $10,000 to $25,000 each year to support their annual Children's Colorado fundraising focus area. Members’ passion for Children’s Colorado is demonstrated through their financial commitments and their shared belief that a child’s life can and should be filled with limitless possibilities.

“We are a group of disruptors,” said Barclay Miller, co-founder and chairman of The 2221 Society, which currently has 24 members. “We aim to be transformative. We aim to be innovators. We aim to be impactful. That is our mission.”

Formed in 2018 by several like-minded, up-and-coming philanthropic trailblazers who wanted to catalyze advancements in children’s health, The 2221 Society name honors the place where Children’s Colorado first underwent a major care transformation — 2221 Downing Street.

The hospital's original building at 2221 Downing Street

“I believe the ‘secret sauce’ in The 2221 Society goes beyond our commitment to the mission of Children’s Colorado; it is a commitment to investing time and creativity to build something new and exciting,” said Taylor Kirkpatrick, co-founder of The 2221 Society. “This group was fortunate to be started by a rising generation of philanthropists who are focused on supporting projects in which innovation and empowerment can improve — and save — lives. It has been a thrill to see The 2221 Society evolve and become a key partner for the hospital.”

2221

A TIMELINE OF IMPACT In partnership with Children’s Hospital Colorado Foundation, The 2221 Society sets ambitious goals to support a different urgent funding need at the hospital each year.

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CHANGEMAKERS

2221 Society members present a check to Children's Colorado

2020 – Partners for Children’s Mental Health

In The 2221 Society’s first year, they raised more than $225,000 for the Children’s Colorado Extended Reality Program, which is a national leader in using innovative technologies and virtual reality therapies to enrich care and help children to cope. These funds allowed more patients to benefit from extended reality and state-of-the-art technologies that greatly enhance their hospital experience and recovery.

Last year, The 2221 Society raised more than $475,000 for Partners for Children’s Mental Health, a statewide entity that brings together health care, policy and thought leaders to improve access to the highest-quality mental health services for kids. These funds supported the statewide implementation of an innovative digital technology that equips rural health care providers with the tools, skills and resources to better respond to mental health needs in their communities.

The 2221 Society raised $325,000 for the Children’sOne Emergency Transport Program. This specially outfitted helicopter enables the Children’s Colorado flight team to transport patients from around the country. When a family is in critical need of care, Children’sOne is there to make the transport as seamless as possible, ensuring the safety of critically ill or injured children as they travel to our world-class facility. Funds from The 2221 Society fully outfitted a flight vehicle, while also ensuring the helicopter has the most up-to-date medical equipment and technologies.

Last August, The 2221 Society hosted day two of Children’s Classic at Sanctuary, an annual golf tournament to raise funds for Children’s Colorado. The 2221 Society raised more than $250,000 for the hospital's Asthma Program to help kids with one of the most common chronic illnesses of childhood. This fundraiser was particularly meaningful for 2221 Society member Chris Bodnar, whose family has benefitted greatly from the hospital’s Asthma Program.

If you’re interested in joining The 2221 Society, please contact Kelly Hercher at khercher@childrenscoloradofoundation.org

2018 – Extended Reality Program

2019 – Children’sOne Emergency Transport Program

A Hole in One for Healthier Lungs

2021 – Simulation Education for Health Care Providers This year, The 2221 Society has focused its efforts on supporting expanded access to simulation education and training for health care providers with a goal of raising $500,000. Simulation laboratories provide experiential learning opportunities that help medical professionals practice their craft, identify problems, and prepare for a variety of medical circumstances in conditions that mimic a hospital environment. Support from The 2221 Society will enable Children’s Colorado to offer these vital training and education services to more providers and create a dedicated Simulation Training Center, where team members will be able to practice basic and procedure-based medical skills.

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IN MY OWN WORDS

From Self-Loathing to Self-Love A personal essay by Luthien, a 16-year-old Children’s Hospital Colorado patient who bravely sought help and found healing “Help me.”

“What are these feelings, these emotions I cannot seem to control?”

“The tears, the anxiety, the stress. Make them go away.”

These are the things that would run through my head every night. It was scary to lose myself and not be able to control my negative emotions.

That loss of control led to terrifying thoughts and decreased my hope and confidence in myself.

Since I could walk, I was always positive, bubbly, optimistic and ambitious. I would make it my goal in middle school to make at least a couple of people genuinely laugh and smile each day. Young and naïve, I truly wanted to make the world happy.

But as I grew, I had to face life’s challenges and hardships. No longer was I innocent and blindly joyful. Personal circumstances produced stress and anxiety, replacing my laughs and smiles. The feelings of being worthless, unloved and not good enough slowly took over my body, my thoughts and my actions.

I would have desperate thoughts: “Who am I? How do I control myself?

How do I become ‘normal’ again?”

I was scared, and I did not know how to react to the total loss of motivation and hope that I felt. Every day, I fell deeper and deeper into what felt like a complete pit of darkness with no way out.

Feelings of hatred towards myself began to grow — hate because I could not fix myself. I had reached a point where I could no longer contain my self-hatred, and by spring of 2020, I had turned to self-harm to cope. It only worsened over time and became a decision that I deeply regret in life.

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CHANGEMAKERS

As my thoughts became worse, I began fearing for my own life. I believed there was no way back. I believed that I was never going to feel better. I finally decided it was time I asked for help. It was not an easy thing to do, but I knew that I wanted to live — for my family, for my younger sister, for my friends — and I could no longer endure the suffering.

That’s when I went to my mom. I asked her to help me, to save me. I said I did not want to continue like this. Together, we trustfully turned to Children’s Hospital Colorado’s Pediatric Mental Health Institute for help, where I was diagnosed with severe depression and anxiety.

After my diagnosis I felt a relief to know what was going on with me and a relief to know that they would help. I entered the Partial Hospitalization Program for a month, where I underwent intensive therapy and made wonderful friends who could truly understand what I was going through. The mental health specialists were also amazing and made me feel welcomed and wanted every day. I knew I was not alone.

With a lot of hard work and support from Children’s Colorado, I learned how to control my emotions, how to create a healthy environment and support system, and how to become better for myself and for others. I still use many of the skills I learned in my daily life, and I now know I can overcome the challenges that life presents to me.

Today, I am dedicated to advocating for the importance of mental health care. I want people who are struggling to know that you are not alone and that the negative feelings one experiences are not permanent. I want others to know that they can be a resource for others and even save a life.

I am grateful for the amazing support and care offered by Children’s Colorado that saved my life.

Luthien

Our Youth Need Your Help Suicide is the leading cause of death for kids in Colorado starting at age 10, and suicidal thoughts/attempts are among the top reasons that patients come to our emergency departments. Our kids cannot wait for better mental health support.

Children’s Colorado has a bold vision to address the youth mental health crisis. Our Pediatric Mental Health Institute provides the full breadth of mental health services, and we are working hard to give more kids access to the care they need, when they need it — but we need your help.

Together, we can help our kids and teens to heal and thrive.

Will you join us?

Visit PMHI.org for more information.

Understanding Multiple Sclerosis

Scientists Unite to Find a Cure

In Multiple Sclerosis, the body’s immune system fights against its own central nervous system, which is made up of the brain, spinal cord and optic nerves. The disease kills the body’s nerve cells and cells that make the nerve fibers’ insulation material, called myelin. The major cause of disability in MS patients is due to this loss of nerve cells, according to Dr. Vollmer.

MS Research Boosted by Collaboration, Philanthropy

The exact cause of MS is remains unknown, but it’s likely triggered by a combination of immune system abnormalities and genetic and environmental factors. These abnormalities in the immune system can cause inflammation that attacks the central nervous system, damaging the nerve cells and never fibers. This can result in a variety of abrupt neurological symptoms (called relapses) that can vary in both severity and type.

When it comes to uncovering new ways to treat and prevent Multiple Sclerosis (MS), a chronic and complex neuroimmunologic disorder with no known cause, the more minds involved, the better. Fortunately, a crosscampus collaboration between the University of Colorado School of Medicine and Children’s Hospital Colorado has brought together many of the nation’s leading clinicians and researchers in adult and pediatric neurology, united by a common cause: to find a cure.

MS is one of the most difficult diseases to diagnose and can include symptoms such as: Dr. Teri Schreiner is leading research to slow the progression of MS in pediatric patients

Located on the Anschutz Medical Campus, the Rocky Mountain Multiple Sclerosis Center combines cutting-edge research and expert clinical care for adult and pediatric patients affected by MS. And while the onset of MS typically occurs in adults between their 20s and 50s, pediatric MS research is rapidly advancing insight into risk factors and prevention, which may ultimately lead to a key that unlocks a cure.

Fighting a silent disease “MS is now one of the most treatable neurologic diseases that we see, but it tends to affect people early in life,” says Timothy Vollmer, MD, professor of Neurology and the Center’s co-director. "Like other neurological conditions, MS tends to be clinically silent at first, meaning the brain can somewhat compensate and mask early disease activity. Many people aren’t diagnosed until permanent damage has already been done. If we can diagnose it early, we can pretty much prevent people from becoming disabled over their lifetimes.”

Dr. Timothy Vollmer

Dr. Vollmer established the Center’s translational research lab, which is analyzing pediatric and adult biospecimens to build predictive models that support the early diagnosis and treatment of MS. Boosted by findings rooted in pediatric MS research, the lab is also working towards developing a vaccine for MS, as well as new therapies to repair neurological damage already done — and even reverse the disease’s course — in individuals living with MS. Teri Schreiner, MD, MPH, a neurologist at Children’s Colorado, is lead investigator of the pediatric arm of this groundbreaking research. Through the DREAMS study, which stands for Detection and Risk in Early MS, her team is seeking to better understand the very earliest signs of MS that appear deep within the brain, long before actual symptoms appear.

This multi-year study is researching children under 18 whose parents or siblings have been diagnosed with MS, thus putting them at an increased risk of also developing the disease. Researchers then use MRIs to detect unusual

spots on the brain and analyze blood samples for potential biomarkers that could help gauge disease progression.

“In the rare chance that we discover an asymptomatic child who has changes in their MRI, we’ll bring the family in for discussions. There is an option to start medicine to treat MS even before the first clinical attack, so we’ll ask them if they’d like to intervene now,” Dr. Schreiner says. “Early intervention can really change the trajectory and minimize — if not stop entirely — further inflammatory attacks on the brain.”

Discovery propelled by philanthropy Aptly named, the DREAMS study became a reality because of a $1 million donation to Children’s Hospital Colorado Foundation by Susan and Scott Drake, Colorado philanthropists who have been directly affected by the disease.

“The Drake family’s donation was incredibly generous, and we are very appreciative,” Dr. Schreiner says.

• Vision issues • Extreme fatigue • Memory problems • Chronic pain

• Tingling, numbness or pain • Bladder control loss • Trouble concentrating • Loss of motor control

Most people with MS are diagnosed between their 20s and 50s and the majority are women. Less commonly, children and teens can be diagnosed.

Among the approximately 940,000 Americans living with MS, experts estimate that about 5 percent or 47,000 are children and teens.

Treatment for adults and young people is similar and focuses on modifying disease progression and managing or preventing relapse and symptoms through medication and lifestyle.

In the past 28 years, major advancements in drugs used to treat MS have greatly improved the disease’s prognosis. Today, research being led on the Anschutz Medical Campus is illuminating new ways to prevent the damage, recover neurologic function and possibly even cure the disease, giving renewed hope to hundreds of thousands of patients nationwide.

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CHANGEMAKERS

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Almost 13 years ago, Susan began experiencing troubling numbness on the left side of her body.

Initially misdiagnosed with a brain tumor, the mother of three’s journey for answers led her to Dr. Vollmer, who diagnosed her with MS. She credits him with helping her to navigate her diagnosis while continuing to live a full, active life.

“I was fortunately connected with Dr. Vollmer’s clinic very early on in my treatment, and we became really confident in his research and team,” Susan says. “We decided we would really like to support this research that is pushing in the direction of a vaccine for MS. We think it’s a really worthy cause, especially because Colorado has a high incidence of MS.”

Inspired by Susan's unexpected diagnosis (second from right), the Drake family made a significant gift to support MS research

Seeking to make the biggest impact with their donation, the Drakes asked Dr. Vollmer to determine where the funds should go. At his recommendation, more than half went to fund Dr. Schreiner’s DREAMS study, with the remainder helping to expand Children’s Colorado’s neuroimmunology program, which includes research into diseases that mimic MS. “This research is not just impacting MS — it’s helping neurological diseases in general. The collaborative efforts taking place because of Dr. Vollmer and his team have led to overlapping treatment protocols showing promising results for many related diseases, like traumatic brain injuries,” Susan says.

’I’m lucky it was caught so early’ Fifteen-year-old Abby Jones of Denver is eager to see how the on-campus MS research evolves. Earlier this year, she was diagnosed with pediatric-onset MS at Children’s Colorado after experiencing eye pain and sudden vision problems in her left eye.

Abby is under the care of Dr. Schreiner and has already directly benefited from research conducted at Children’s Colorado through the Rocky Mountain MS Center.

Every six months Abby receives an infusion of a game-changing new therapy, rituximab, to help slow the progression of the disease. It works by attacking the B-cells that contribute to the brain damage caused by MS. This can slow or even halt disease progression and prevents “flare ups.”

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FORMER PATIENT PAYS IT FORWARD

Here are just a few of the philanthropists who are making an impact at Children’s Hospital Colorado.

JT Mestdagh was born with VATER/ VACTERL syndrome. He’s been coming to Children’s Hospital Colorado for treatment for years, and with the help of his doctor, Alberto Pena, MD, Mestdagh is living a full, happy life. Now an adult, Mestdagh is so grateful for the care he received that he formed the JT Mestdagh Foundation to help other patients facing similar challenges.

Emergency Room Renovation to Help Kids in Crisis Children’s Hospital Colorado continues to see record numbers of patients in the emergency department due to anxiety, depression and suicide attempts.

Recognizing the need for enhanced resources, Dr. Nancy Gary, a longtime donor and lifetime member of the hospital’s Board of Directors, made a significant contribution to improve the Children’s Colorado emergency department (ED) on the Anschutz Medical Campus.

Abby Jones, a Children's Colorado patient, has been able to manage her MS with newlydeveloped therapies

Dr. Schreiner has extensively studied disease modifying therapies for children with MS and has recently worked with an international consortium on treatment protocols for the commonly used, off-label medication rituximab.

“I honestly have it quite easy where I am right now, and I’m lucky it was caught so early,” Abby says. “The diagnosis hasn’t affected me much at all except that I feel a lot more fatigued these days.”

A sophomore in high school, Abby hopes to one day work with children with special needs. While her longterm prognosis is bright, Abby hopes to see even more advancements in the future — including a vaccine for MS during her lifetime.

“When I was first diagnosed, my parents were quite worried because MS was so bad for past generations,” she recalls.

“But the team at Children’s Colorado has been amazing, and my treatment is helping me feel a lot better. A vaccine for MS would be so cool.”

Learn more about how to support groundbreaking research discoveries at Children’s Hospital Colorado: SupportChildrensColorado.org/research

DONOR SPOTLIGHT

Dr. Gary’s recent gift will support a four-phase renovation project that includes updates to the waiting room and patient intake area. It will also enable Children’s Colorado to add an ED behavioral health suite with several specially designed rooms, each outfitted with multiple safety and design elements to stabilize and support kids in crisis. The ED redesign will help to ensure the comfort and safety of patient families while creating an environment that supports caregivers.

“It gives me great joy to stand with Children’s Colorado as they boldly take on huge steps, in partnership with the community, to address the youth mental health crisis we are all facing,” said Dr. Gary.

Gift Honors Patient’s Life by Fueling New Research Discoveries Even though she battled a primary immunodeficiency disease from a very young age, Tara Guetz had a passion for life that could not be dimmed.

Despite her many surgeries, hospitalizations and flare-ups, Tara had a sparkle that defied her illness. She underwent a liver transplant and later a bone marrow transplant, yet she played club soccer, club cheer and brought joy to others as a student at Colorado State University.

In December of 2020, Tara became very ill and tragically passed away at the age of 21, but her memory lives on through the work of the Tara Guetz Foundation, which Tara’s family formed in her honor. The Foundation recently made a $100,000 gift to fund the research of Cullen Dutmer, MD, who was Tara’s immunologist at Children’s Colorado.

JT Mestdagh presents a check to caregivers at Children’s Colorado

Mestdagh kickstarted his fundraising efforts by hiking 29,029 vertical feet — the equivalent of Mt. Everest — earlier this year. Donors generously supported his climb to help Mestdagh make a gift of $20,000, followed by another gift of $5,000, to Children’s Colorado.

These funds will support colorectal patient families who need help affording medical supplies and other treatment-related expenses.

Mestdagh says his foundation aims to “ease the demands that no one should face alone,” and his inspirational gift — and story — will certainly achieve that and more for patients at Children’s Colorado.

Tara Guetz

Research for rare pediatric diseases is significantly underfunded. The Tara Guetz Foundation hopes that these critical funds will not only make a difference locally but will also enable Dr. Dutmer to secure larger grants to conduct transformative research for kids facing primary immunodeficiency diseases worldwide.

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SPECIAL EVENTS

Philanthropy on the Farm Event Supports Southern Colorado Kids Children’s Hospital Colorado Foundation hosted its first ever Philanthropy on the Farm event on Sept. 10 at Flying Horse Ranch in Larkspur, Colo. This intimate, outdoor, farm-to-table event supported the Southern Colorado Programs Fund. More than $760,000 was raised to help address the greatest needs of our patients, families and caregivers at Children’s Hospital Colorado, Colorado Springs. It was incredible to see our generous community come together to support local kids at this fantastic inaugural event!

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Leave a Legacy of Hope and Healing

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Consider an estate gift to Children’s Hospital Colorado

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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.

1. Partygoers arrive at Philanthropy on the Farm 2. T he Kory Brunson Band entertains guests with country rock music 3. From left: Aimee and Marissa Ferris, a patient ambassador family, with Sally Hybl 4. From left: Ben and Kate Faricy with Kim and Paul Florence 5. Geoff Doner, MD and Rachael Doner

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7. Scott McKechnie (center) with table guests

Flying Horse Ranch

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CHANGEMAKERS

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

6. From left: Jena and Kevin Hausmann with Greg and Collette Raymond

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Go to SupportChildrensColorado.org/legacy or call 720-777-1752 to learn more or to notify us of your bequest.

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.

SupportChildrensColorado.org

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