CHANGEMAKERS Winter 2019
Could cancer be cured without chemo? Page 5
INSIDE Meet our Canine Caregivers, page 2 Pediatric Mental Health: My Journey to Recovery, page 12 One Family's Mission to Find a Cure, page 14
CONTENTS
2
News & Updates
4
Donors Make a Difference
5
Research Breakthroughs Curing Cancer Without Chemo
8
Fueling Innovation How Doctors Improved an Invasive Test
12
Pediatric Mental Health My Journey to Recovery
14
One Family’s Mission to Cure a Deadly Brain Tumor
16
Event Spotlight Donors and Kids Shine at Children's Gala
You might not expect to find joy in a hospital during the holiday season. In fact, a hospital is probably the last place that a family would want to spend the holidays. But then again, Children’s Hospital Colorado is not an ordinary hospital.
Cecilia Children’s Hospital Colorado patient
Every time I step inside Children’s Colorado during this special time of year, I am struck by the sense of wonder and magic that our community makes possible for our patients. From carolers to holiday decorations to toy deliveries, your support enables our team to bring comfort — and even joy — to the children who are spending their holiday season in our care. But perhaps even more important than the special holiday touches is the gift of hope and healing that your generosity brings to our patient families. With hundreds of active research studies underway, our doctors are tireless in their search for new and better treatments for young patients like Jalen, featured on our cover, who is currently undergoing chemotherapy. You can read his story — and how your support fuels new cures for pediatric cancer — on page 5. Changemakers is a new publication from Children’s Hospital Colorado Foundation, and it is full of stories about how our donors make a powerful difference for kids. As you’ll read in this edition, when you donate to Children’s Colorado, you support cutting-edge innovations, world-class medical expertise and the very best clinical care — and you make change possible. It’s a priceless gift, and I am so grateful to generous donors like you for investing in the lives of children. Not only are you giving our young patients the chance to experience the magic of the holidays, you’re also giving them the very best chance to grow up and live full, happy lives. Thank you for your support! Gratefully,
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: Madeline Schroeder, Erin Bodine Design: Straightline Design • 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.childrenscoloradofoundation.org/disclosures. To opt out of mailings from Children’s Hospital Colorado Foundation, please call 720-777-1700.
NEWS & UPDATES
Welcoming Our Canine Caregivers Sometimes, support from a furry, four-legged friend is just what kids need to put them on the path to healing. Earlier this year, Children’s Hospital Colorado welcomed Ralph, our first full-time medical dog, to our Child Life team. Support from donors, including the Joy in Childhood Foundation, enabled us to recently add two more medical dogs to our team: a pair of golden retriever siblings named Halo and Galaxy. Research shows that animal-assisted therapy can reduce anxiety, diminish pain and expedite healing. With the partnership of their expert clinical handlers, our trained medical dogs help patients to cope with the stress of a hospital stay or doctor’s visit. They can even help anxious children to take their medications or hold still during difficult procedures. The Children’s Colorado Medical Dog program is one of many family support services made possible by donors like you.
Ralph is Children's Hospital Colorado's first full-time medical dog.
2
CHANGEMAKERS
New Health Pavilion Provides Prevention-Based Care After months of planning and preparation, the Children’s Colorado Health Pavilion welcomed its first patients in August. Located one mile south of the Anschutz Medical Campus in Aurora, the new facility improves access to prevention-based clinical care and assists families in overcoming health obstacles. The Health Pavilion includes 19 specialty clinics to address the needs of local kids and teens, offering them comprehensive care under one roof. The new facility is home to our Young Mothers Clinic, Adolescent Medicine Program and the Child Health Clinic, which provides pediatric primary care services for more Medicaid patients than any other practice in the area. Patients also have access to dental care, mental health consultations and a food clinic. The facility even houses a resource center that connects families to crucial community services such as food, transportation, housing and energy assistance. By bringing essential services closer to the families who need them most, the Health Pavilion provides comprehensive, integrated care that helps kids and families to get — and stay — healthy.
LEGACY CHALLENGE: Activate $1,000 with an Estate Gift If you’ve ever considered including Children’s Hospital Colorado in your estate plans, now is an ideal time to let us know. You can make a major impact today while creating a legacy that will go on for years to come by participating in our Legacy Challenge. Through the end of 2019, when you let us know that you have included us in your will or as a beneficiary of your IRA, retirement plan or insurance policy, you will activate an immediate $1,000 cash gift in your name to Children’s Colorado from an anonymous donor. To build for the hospital’s future, Children’s Colorado needs donors like you who plan to graciously give to the hospital in the years to come. To participate in the Legacy Challenge or to learn more, visit ChildrensColoradoFoundation.org/legacychallenge or call Steve Shineman, CFP® at (720) 777-1752.
Children’s Hospital Colorado Among the Best in the Nation Kids get the best care in the nation at Children’s Colorado, because our care team is the best at what they do. We’re proud that Children’s Hospital Colorado was once again named as one of the top 10 pediatric hospitals in the country by U.S. News & World Report, based on clinical data and reputation. In addition, all 10 of our ranked specialties were named among the country’s top 20 programs. This is the 19th time we’ve been named to the U.S. News & World Report Honor Roll in the publication’s 20-year history. Thank you to the donors who ensure that we can provide the best possible care for every child who comes through our doors.
3
YOUR SUPPORT IN ACTION
Donors Make a Difference Supporting Pediatric Cancer Breakthroughs Thanks to The Salah Foundation, we’re one step closer to finding new cures for pediatric cancer. Their recent gift will support the research of Dr. Michael Verneris, director of Bone Marrow Transplant and Cellular Therapy at Children’s Hospital Colorado. As the Barton Family Endowed Chair for Bone Marrow Transplant, Dr. Verneris and his team are studying how to activate aspects of the immune system to treat children Dr. Michael Verneris with leukemia. The Salah Foundation’s gift will fund research that explores ways to apply these novel cellular therapies to other types of pediatric cancers, including solid tumors, which have very poor survival rates and few treatment options. Note: The Salah Foundation is a private foundation by invitation only.
Spirit Halloween Makes the Hospital Less Scary Over the past 12 years, Spirit Halloween has donated an incredible $1.2 million to Children’s Colorado from their annual “Spirit of Children” in-store fundraiser. 100% of the donated funds benefit Children’s Hospital Colorado’s Child Life Program, which helps make the hospital experience more comfortable by providing family support services and healing through play. Spirit Halloween also hosts nearly 100 Halloween parties at partner hospitals across the country — including Children’s Colorado — so that kids spending Halloween in the hospital can still enjoy the scary fun of the season.
4
CHANGEMAKERS
Generous Gift Creates Emergency Room Behavioral Health Suite The emergency department at Children’s Hospital Colorado, Colorado Springs recently opened a first-ofits-kind behavioral health suite, thanks to a generous $500,000 gift from the Colorado Health Access Fund of The Denver Foundation. The suite is just one aspect of our commitment to addressing the mental health crisis facing Colorado kids and teens. The new behavioral health suite includes six patient rooms with a multitude of state-of-the-art safety and design elements to protect kids in crisis — from weighted beds and rounded corners to sunny windows and calming colors. The Colorado Health Access Fund of The Denver Foundation was founded in 2014 and is focused on increasing access to behavioral health care across the state.
Ent Credit Union Helps to Fight Youth Suicide Epidemic Ent Credit Union has pledged more than $1.2 million to support mental health services in Children’s Hospital Colorado’s care system and across the state. Suicide is the leading cause of death for Coloradans ages 10 to 24. Ent Credit Union’s partnership with Children’s Colorado will fund initiatives that give kids and families better access to best-in-class mental health care, so challenges don’t escalate into emergencies. “Ent Credit Union’s generous gift is providing resources to make a new mental health future a reality, and for that, we are so grateful,” said Shannon Van Deman, Vice President of the Pediatric Mental Health Institute at Children’s Colorado.
Jalen Children’s Hospital Colorado patient
Fighting Back Physician-scientists at Children’s Hospital Colorado are gaining ground on pediatric cancer by using an unexpected weapon: the body’s own immune system. Jalen is exhausted. He’s been living with leukemia for a year and a half, and the treatments never seem to get any easier. Chemotherapy has done its job of sending his cancer into remission, but the powerful medicines leave him nauseous and worn out. He’s missed more school days than he can count.
Their work has the potential to drive radical progress in treating and curing pediatric cancer — and that could mean a future in which kids like Jalen could be cured without chemotherapy.
“I wish there was an easier cure,” says Jalen, age 9.
Dr. Fry is one of the world’s preeminent investigators of immunotherapy, a promising new treatment approach that harnesses the body’s own immune system to fight cancer and other diseases. As Director of Cancer Immunotherapy on the Anschutz Medical Campus, Dr. Fry is discovering new ways to train the body’s cancer-fighting T-cells to hunt down and kill cancer cells.
While he gets his bi-weekly chemo infusions at Children’s Hospital Colorado, a team of physicianscientists on the Anschutz Medical Campus are working tirelessly to make Jalen’s wish a reality. Led by Dr. Terry Fry, researchers are working to turn our immune systems into cancer-fighting machines.
Cancer’s Worst Enemy
continued on page 6 >
5
In recent decades, survival rates for the most common form of pediatric cancer, acute lymphoblastic leukemia (ALL), have increased to nearly 90%. For the 10% of children who relapse or whose cancer doesn't respond to chemotherapy, survival rates plummet dramatically. Even for kids who are cured, chemo often leaves behind lifelong side effects. With the help of philanthropy (see blue box on page 7), Dr. Fry is changing the future for kids fighting cancer. He was among the first scientists to investigate an emerging immunotherapy treatment known as CAR-T cell therapy. He helped to develop the world’s first commercially available cancer gene immunotherapy: a chimeric antigen receptor (CAR) that targets a specific protein found on the surface of leukemia cells, CD19. “With this therapy, we remove the immune cells from the patient and then genetically modify them,” explains Dr. Fry. “We redirect the cells to find the tumor. Then we reinfuse those cells back into the patient. We’re essentially supercharging the immune system to seek out and destroy cancer cells.”
‘‘
Dr. Terry Fry (right), is one of the leading cancer researchers in the country
The initial results of this new therapy are unprecedented. Approved by the Food and Drug Administration (FDA) for pediatric use in 2017, the CD19 CAR therapy achieved an astonishing 80-90% remission rate in leukemia patients whose cancer didn’t respond to traditional chemotherapy in just 4 months of treatment. Moreover, patients in the trial were able to avoid many of the harsh, painful effects of chemo. “Traditional chemotherapy is effective but toxic,” says pediatric oncologist and The Barton Family Endowed Chair for Bone Marrow Transplant, Dr. Michael Verneris, another primary investigator of the CD19 CAR. “And in some cases, it’s actually not effective.” The Children’s Colorado Center for Cancer and Blood Disorders is now infusing patients with the CD19 CAR therapy every month. We are one of only five sites in the nation providing this life-changing immunotherapy treatment, which could be a game changer for the way we treat pediatric cancer. If you ask Dr. Fry, he’ll tell you that this is just the beginning.
We're identifying new ways to target and eradicate the roots of cancer without destroying normal cells and tissue.” – DR. TERRY FRY
6
CHANGEMAKERS
Building a Better CAR Subsequent studies on the CD19 CAR therapy showed that about half of patients treated later relapsed. Their modified T cells died off, the leukemia cells mutated to resist them, and the cancer returned. "We're using the patient's own cells as the material to make this therapy, and sometimes you get a bad cell,” explains Dr. Fry. Today, Dr. Fry is working on immunotherapy treatments that decrease cancer resistance and improve the likelihood of keeping cancers in remission. For the patients who relapsed after the CD19 CAR therapy, Dr. Fry developed a new CAR treatment that targets a different protein
Donor-Fueled Breakthroughs When donors invest in research at Children’s Hospital Colorado, new cancer treatments are identified, lives are saved and children around the world benefit. “All of my research is dependent on funding,” said Dr. Fry. “That’s how we move these new therapies forward.” Nationwide, research funding is scarcer than ever — especially within the field of pediatrics. Between budget cuts and inflation, the National Institutes of Health (NIH), the federal government’s primary source of research grants, offers far less support than it did 20 years ago. Pediatric cancer research grants are even harder to secure, netting just 4% of the NIH’s overall spending. As federal research funding continues to decline, philanthropic partners have generously stepped in. Community support helps us to bridge the funding gap and continually identify promising new therapies.
found on the surface of leukemia cells, known as CD22. Currently in clinical trials, initial studies show that 85% of patients went back into remission with the CD22 CAR therapy. With these promising results, Dr. Fry’s new therapy was recently granted breakthrough designation by the FDA, which will fast-track its development and make the CD22 CAR commercially available to more children sooner — including patients at Children’s Colorado. Dr. Fry is also working to apply his findings to other cancers. His lab is developing a CAR targeting a protein expressed by acute myeloid leukemia (AML) cells. The FDA has already approved a clinical trial of this new therapy for children with relapsed AML. The multisite trial, which includes Children’s Colorado, is expected to open in the coming year.
Endless Possibilities The way Dr. Fry sees it, childhood leukemia is just one of many potential applications of immunotherapy. His lab is in discussions with fellow research teams studying brain tumors and solid tumors. The goal is to expand the lab’s success with immunotherapy
Dr. Fry is the Robert J. and Kathleen A. Clark Endowed Chair for Pediatric Cancer Therapeutics. The Clarks’ generous gift provides a steady stream of support for Dr. Fry’s trail-blazing work, allowing his research progress to continue moving forward, without interruption. With a world-class team and an exceptional array of collaborative resources on the Anschutz Medical Campus, Children’s Colorado is uniquely positioned to advance new immunotherapy treatments for pediatric cancer. But the truth is, we can’t conduct our lifesaving research without generous donors. Your support funds groundbreaking discoveries that minimize side effects, cure cancer and save lives.
in treating other types of cancers — and even adult conditions. “Treatment for autoimmune diseases involves manipulating the same cells we’re studying,” says Dr. Fry. “This absolutely has potential beyond cancer and pediatric illnesses.” Dr. Fry’s lab also continues to expand its treatment arsenal for acute lymphoblastic leukemia, aiming to improve remission durability. “Our lab is rolling out a therapy that targets both the CD19 and CD22 proteins, so we can treat all types of acute lymphocytic leukemia,” said Dr. Fry. Currently in proof-of-principal phase, this therapy is showing promising early results. Clinical trials are projected to begin enrolling patients at Children’s Colorado in spring 2020 — the first trial of its kind on the Anschutz Medical Campus. “Instead of a 50% remission rate at one year, maybe we can get up to 75%. Then maybe some patients don’t have to undergo chemo at all. This is our vision.”
Visit ChildrensColoradoFoundation.org or call 720-777-1700 for more information on how you can help to advance cancer research breakthroughs.
7
INNOVATIONS That Transform Care Danny was just 1 year old when he was diagnosed with a condition that would impact him for the rest of his life. Eosinophilic esophagitis, or EoE, causes chronic inflammation of the esophagus. The condition is triggered by food allergies and can make it extremely difficult to eat and swallow. When Danny was first diagnosed, he was vomiting multiple times a day — up to 40 times a week — and not gaining any weight. “It is a serious diagnosis,” says Danny’s mom, Corinne. “And frustrating because, at first, there were so many unknowns.” Currently, there is no cure for EoE, and patients require lifelong monitoring and frequent invasive tests, often performed under anesthesia. But that’s all changing, thanks to new medical innovations developed by doctors at Children’s Hospital Colorado. With the support of donors, Dr. Joel Friedlander and Dr. Glenn Furuta have developed less-invasive ways to diagnose and monitor EoE, and their discoveries are already making life easier for kids like Danny.
An Invasive Test to Find the Triggers “The hardest part of EoE is identifying the triggers,” explains Corinne. “For some kids, it’s just one food that they’re allergic to; for others, it’s four or more.” Until recently, the only way to figure out which foods cause the EoE reaction was to do an endoscopy of the upper gastrointestinal tract. Performed under heavy sedation or anesthesia, the procedure entails inserting a tiny camera and biopsy tool down a patient’s throat. Although necessary, the procedure is costly, must be done frequently, and comes with additional risks and time spent at the hospital.
8
CHANGEMAKERS
Danny’s family tried their best to only do endoscopy testing when absolutely necessary. Even so, by the time Danny was 2½ years old, he had already been put under anesthesia a dozen times. “Every time he had to go under, we would just dread it,” says Corinne. Adults with EoE are typically monitored through nasal endoscopies, which can be done without sedation. Unfortunately, nasal endoscopy imaging tools were always too big for pediatric use — that is, until Dr. Friedlander had a big idea.
Building a Better Endoscopy As a pediatric gastroenterologist with an inventor’s mind, it’s not surprising that Dr. Friedlander would look for new, better ways to care for his young patients at Children’s Colorado. “I’m in the operating room with ENTs and pulmonologists every week,” Dr. Friedlander says. “We noticed that we all have different pediatric scopes that are used for different things. Our team realized that we could use a different technique with a pulmonary scope to fulfill our EoE patients’ endoscopy needs. The idea just grew from working together.” Dr. Friedlander knew he had a great idea, but he needed a lot of support to turn his concept into an brand new device — one that could be brought to market to improve care for children around the world. Fortunately,
Corinne and Danny
Dr. Joel Friedlander (right) pioneered a new way to do endoscopy testing on kids that eliminates the need for sedation.
he had help from Children’s Hospital Colorado’s Center for Innovation (see page 10). With their support and mentoring, Dr. Friedlander, along with his colleagues Dr. Robin Deterding, Dr. Emily DeBoer and Dr. Jeremy Prager, founded Triple Endoscopy, Inc. in 2017 to manufacture and market the new procedure. With the new technique, patients first receive a numbing nose spray. Then, they slip on a
pair of virtual reality goggles to distract them while a caregiver gently glides a tiny camera and biopsy tool through the nose, into the esophagus. The procedure takes about eight minutes, dramatically cutting costs. And with no anesthesia, it reduces what was a full day at the hospital down to a one-hour appointment, so children can often return to school the same day. These improvements have made a tremendous difference for kids like Danny. continued on page 10>
9
‘‘
Innovation is important because medicine is not just about working within the parameters of what we know. It’s also about thinking outside the box.” – DR. JOEL FRIEDLANDER
“It’s incredible to be a part of this with my team and all that we have learned through the Center for Innovation,” Friedlander says. “We’re making the impossible, possible.”
A String, a Pill and an Idea “It’s been profoundly impactful,” says Corinne. “Now Danny almost looks forward to his endoscopy tests. He can avoid the IV and sedation, and he gets to be an active participant in discovering more about how to manage his EoE.” Dr. Friedlander’s endoscopy innovation has been validated through patient trials. So far, doctors from more than a dozen other hospitals have traveled to Children’s Colorado to learn the new technique and bring it to their patients. Danny’s family lives in Phoenix, Ariz., and his local care team recently came to Children’s Colorado to be trained on the nasal endoscopy. That means Danny can now take fewer trips to Colorado for testing, which is welcome news for Corinne. “Any effort to collect more data promises more answers for Danny and all children with allergic diseases,” she says. Triple Endoscopy plans to commercially launch its medical device, described as a turn-key system for pediatric nasal endoscopies, by the end of 2020.
As director of the Gastrointestinal Eosinophilic Diseases Program (see page 11) at Children’s Hospital Colorado, Dr. Glenn Furuta has long pondered how to limit invasive testing for his EoE patients. Today, with support from the Center for Innovation, he’s commercializing a new device that does just that. “I wanted to remove the Dr. Glenn Furuta burden of endoscopies for families,” says Dr. Furuta, who holds the La Cache Endowed Chair for Gastrointestinal, Allergic and Immunologic Disease at Children’s Colorado. “I knew that by creating a less invasive test, we could decrease costs, reduce the time spent at the hospital and improve quality of life.” Dr. Furuta wondered whether an old technology known as a “string test” — which was developed in the 1980s to test for intestinal infections — could replace the invasive endoscopy testing required to monitor EoE patients.
What is the Center for Innovation? The Center for Innovation is a leading health innovation hub at Children’s Hospital Colorado. It provides resources and expertise to help caregivers and companies turn their ideas into life-changing health care innovations and bring them to market — all with comprehensive support from an experienced team of business, medical and legal experts. Your donation to the Innovation Fund provides critical resources to scale novel ideas into new therapies, products and technologies that benefit kids here and around the world. Learn more at ChildrensColoradoFoundation.org/innovation
10
CHANGEMAKERS
The string test is a technology in which a small capsule — about the size of a Tylenol pill — is filled with a string. One end of the string is taped to the cheek, and upon swallowing the capsule, the string is unwound within the patient’s esophagus, stomach and small intestine. After a period of time, the capsule becomes dislodged, and the string is gently pulled out and tested. Dr. Furuta hypothesized that his EoE patients could use a string test to collect mucus samples and monitor their condition. He was so enthused about his idea that he made a makeshift string test in his kitchen and tried it himself to see if it worked. As it turned out, it did. Dr. Furuta collaborated with Dr. Steve Ackerman, a PhD scientist at the University of Illinois at Chicago. Together, they completed a series of studies that examined the ability of the Esophageal String Test to monitor EoE disease activity in patients at Children’s Colorado, University of Colorado Hospital, Lurie Children’s Hospital and Northwestern University. The string test was used for an hour in two groups of patients: those who had EoE and those who did not. Secretions on the string were then analyzed. Their results showed that proteins found in EoE patients adhere to the string and act as markers for inflammation, thus allowing physicians to monitor patients without the need for a sedated endoscopy. In 2013, Dr. Furuta, along Dr. Ackerman and Dr. Robin Shandas, cofounded EnteroTrack to bring the new device to EoE patients. The company soon ran into barriers that held up the product launch, including insurance approval issues and the development of new medical codes. That’s where the Center for Innovation proved incredibly helpful. Dr. Furuta says the Center provided guidance on the regulatory and compliance aspects of getting the test launched. Today, EnteroTrack is very close to bringing its innovative string test to market. “There’s a lot of interest, and my patients are always asking when it will be ready,” says Dr. Furuta. “We are almost there.”
Caring for Kids with Gastrointestinal Disease For most people, food offers sustenance, nutrition and joy. But for kids with eosinophilic gastrointestinal diseases (EGIDs), food is often a source of discomfort, pain and anxiety. Children’s Hospital Colorado’s Gastrointestinal Eosinophilic Diseases Program is among the best in the nation. We take a highly collaborative, integrated approach to unraveling the mysteries surrounding EGIDs. Our expert team provides cutting-edge clinical care, as well as feeding specialists, dieticians and behavioral health professionals to give families the support they need. This world-class care is fueled by giving. The Gastrointestinal Eosinophilic Diseases Program is partnering with the community to raise $5 million to find new and better ways to treat kids with food-related disorders. With your help, we will accelerate research, develop better diagnostic tools and identify new treatments that can provide healing to every child. To learn more, contact Marylou Houston at 720-777-1723 or mhouston@ childrenscoloradofoundation.org.
11
IN MY OWN WORDS
My Journey to
RECOVERY I have always been an extremely driven, competitive and perfectionistic person. As a kid, these qualities were most evident when I played soccer. Stepping onto the field gave me a much-needed outlet where I could work hard to be the best. However, it was also the place where I first started to experience anxiety. Due to the pressure I put on myself to be successful, I began to have overwhelming and debilitating bouts of anxiety. Even at a young age, these feelings of anxiety dictated my life. Living with anxiety was a challenge, but when my older brother began to display symptoms of bipolar disorder, it got worse. I desperately wanted to make things better for him, but I felt helpless. His struggles with mental health were severe, and despite seeking help, he eventually took his own life. After my brother’s death, my own mental health deteriorated rapidly. The realization that, at any moment, someone I care about could die made me angry and depressed. I became numb, watching everyone around me move through life while I felt like I couldn’t take a single step forward. My anxiety became crippling, and life became unbearable. A year later, I attempted to kill myself. After my suicide attempt, I found myself at Children’s Hospital Colorado. There I spent time in an inpatient unit and experienced the treatment intervention I so desperately needed. Children’s Hospital Colorado provided me with the opportunity to pull myself out of the negative spiral I had fallen into. It gave me the skills necessary to manage my depression and anxiety while simultaneously teaching my parents how to best support me. The quality of mental health care at Children’s Hospital Colorado is unparalleled and should be available for any adolescent who is struggling. This is why support for the Pediatric Mental Health Institute at Children’s Hospital Colorado is of utmost importance. This support means more kids like me can receive life-saving treatment and, ultimately, prevent the occurrence of stories like my brother’s.
Chloe
If a child in your life needs mental health support, please call 720-777-6200 to book an appointment with our team of specialists.
12
CHANGEMAKERS
Chloe, a patient of the Pediatric Mental Health Institute, shares her journey from despair to hope.
Why Support for Pediatric Mental Health Matters It is an unsettling and stressful time for our youth. Suicide is now a leading cause of death for kids and teens, while countless other children struggle to get the help they need. At Children’s Hospital Colorado, we’re committed to providing better access to families so they have the right mental health care at the right time. Our Pediatric Mental Health Institute provides the full breadth of mental health services, giving kids and teens the support they need to thrive. Extraordinary change takes extraordinary resources. A new mental health future for kids will only happen with donor support. Will you join us? Visit PMHI.org for more information.
13
Honoring Luke One Family’s Mission to Find a Cure for a Devastating Brain Tumor in Their Son’s Honor Rare. It’s a word that Jill has grown to despise. “Something is only rare until it happens to your child,” she says. Then, the word loses its meaning entirely. Rare becomes your life. Your family. Your whole world. Your precious preschooler. In April 2018, Jill’s 5-year-old son Luke was diagnosed at Children’s Hospital Colorado with an inoperable, aggressive brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG). Just 17 days later, the empathetic, creative little boy who loved Hot Wheels and the Beatles succumbed to this terrible disease that — despite being considered “rare” — robs several hundred families of their children each year. Shortly after their excruciating loss, Jill and Cam, Luke’s parents, started the Luke Morin Fund for DIPG Research at Children’s Colorado with the goal of discovering new treatments — and ultimately finding a cure — for Luke’s type of brain cancer.
Luke Morin
DIPG is a particularly devastating diagnosis. It only affects children, and it is always fatal, with a median survival time of just 9 months from diagnosis.
The Morin family has made it their mission to change this heartbreaking fact. “If you can solve the hardest problem first,” says Cam, “it’s going to affect everything downstream.”
14
CHANGEMAKERS
Cam, Phebe and Jill Morin hold a photo of their beloved Luke
That belief has led to the family’s unwavering commitment to fundraising for research. It’s been a little more than a year since Luke passed away, and the Morin family has already made significant progress on the road to ending DIPG. “Monumental advances have been made because of the funds raised in honor of Luke,” says Dr. Rajeev Vibhakar, the Dr. Nicholas Foreman Endowed Chair in Pediatric Neuro-Oncology Research, who was the little boy’s doctor at Children’s Colorado.
Pediatric cancer: A double-edged sword Childhood cancer is a double-edged sword — children get cancer at much lower rates than adults, but because there are fewer cases, there is far less research funding and support from the federal government and pharmaceutical companies. Childhood cancers are the leading cause of disease-related death for kids, yet a meager 4% of federal research funds are dedicated to researching these childhood illnesses, and of that, even less funds pediatric brain cancer research.
The effects of pediatric cancers are particularly tragic, destroying childhoods and in the worst cases, like DIPG, stealing bright futures.
study and are vital in the testing of drugs and treatments. These DIPG cells are propagated from Luke’s tumor, and in this way, the invaluable gifts from this treasured little boy’s life carry on. The ability to grow DIPG cells Dr. Rajeev Vibhakar directly from patient tissues was a recent breakthrough, and the neuro-oncology team is now able to study the development and characteristics of the tumor.
“Kids shouldn’t die,” says Luke’s 10-year-old sister Phebe with matter-of-fact sadness after suddenly losing her little brother, who loved to snuggle with her in bed each night while she would read to him. It’s a universal truth, and yet it happens far too often. Philanthropy is critical in driving new treatments and therapies that can change the prognosis for children with DIPG and other pediatric cancers.
This has led to the discovery that the gene mutation in DIPG alters other proteins that are needed for the tumor cells to grow. The team at Children’s Colorado is currently developing an antibody to attack the recently discovered proteins, which may increase cell death — and, by extension, slow tumor growth.
Devoted to discovering a cure In recent decades, research has led to many promising discoveries that are saving children’s lives. Fifty years ago, the survival rate for acute lymphocytic leukemia — the most common childhood cancer — was less than 10%. Today it’s about 90%, and overall childhood cancer survival rates are a little over 80%.
Through genetic sequencing, researchers also discovered that DIPG develops resistance to chemotherapy, and a clinical trial is now underway to uncover which drugs might be used to reduce this resistance.
While survival rates for many pediatric cancers have improved, one thing has not changed: DIPG still has a 0% survival rate. Despite dramatic scientific progress for other kinds of cancers, including new treatments and cures, DIPG remains just as deadly today as it was a half century ago.
None of this would have been possible without the support provided by the Luke Morin Fund and other donors. The findings from this research could have major implications not only for DIPG, but also for other pediatric cancers. Thanks to this fund, researchers are learning more about what makes DIPG cancer cells “switch on,” what makes them become resistant and how to harness a patient’s own immune system to fight back. That could lead to a better comprehension of these mechanisms in other types of cancers, too.
The Morin family believes that with adequate funding, doctors will be able to make giant leaps for children diagnosed with DIPG. Support from the Luke Morin Fund has already propelled major strides forward in understanding this disease, underwriting the work of Dr. Vibhakar and Dr. Sujatha Venkataraman at Children’s Colorado, a national leader in DIPG research. Three labs on the Anschutz Medical Campus are studying DIPG across the research spectrum, from basic discovery to early-phase clinical trials of new drugs. The Morin family has raised more than $250,000 to support this groundbreaking research with the hope of finding a cure.
‘‘
Luke was put on this planet to help find a cure,” says Phebe, who has contributed more than $700 to research in her brother’s honor, raising money through her bake sale at the Goddard Cares Fall Fest 5K in Honor of Luke Morin. “He’s our motivation.”
Dr. Vibhakar and his team in The Morgan Adams Foundation Pediatric Brain Tumor Research Program have hired a research technician and are You Can Make a Difference now able to grow DIPG To join the Morin family in their quest to end DIPG in honor of Luke, cells, which require visit ChildrensColoradoFoundation.org/Morin to make a gift. special care to Dr. Rajeev Vibhakar’s team of researchers will receive 100% of the donations to the Luke Morin Fund, which is dedicated to DIPG research.
Donors Exceed Expectations at Children's Gala The 2019 Children’s Gala was an evening to remember. Generous supporters from across the Rocky Mountain region came together to support kids and families at Children’s Hospital Colorado in big ways. Gala guests gave nearly $3.4 million to the hospital — the most money ever raised in the Gala’s 42-year history. “We are in awe of the generous hearts at this year’s Children’s Gala,” said Jen Darling, President and CEO of Children’s Hospital Colorado Foundation. “Donors have shown what a powerful impact we can make when we come together as one community for kids.” 1. Patient Ambassador Hunter with former Denver Broncos player and event emcee Reggie Rivers. “The hospital is fueled by giving, like a rocket ship,” Hunter explained to Reggie. 2. Longtime donors Ed and Jeannette Kerr and their family served as 2019 Gala hosts. The Kerrs surprised guests by pledging a generous $500,000 gift at the Gala.
2
3
4
3. Remington Rabins, pictured with husband Joel, is a former patient and daughter of Gala hosts Ed and Jeannette Kerr. 4. C hildren’s Hospital Colorado Board Chair Barth Whitham with Jena Hausmann, President and CEO of Children’s Hospital Colorado.
1 5
5. Jennifer Roe Darling, President and CEO of Children’s Hospital Colorado Foundation, with Mateo and his sister Emilia, a Patient Ambassador.
6
6. Guests celebrated a successful evening by dancing the night away to a high-energy performance by Fitz and The Tantrums.
Upcoming Events Benefiting Children’s Hospital Colorado Powder Challenge in Steamboat Springs • February 27-29, 2020 Little Hearts Luncheon and Fashion Show • April 9, 2020 Balloon Ball in Colorado Springs • April 17, 2020 Courage Classic Bicycle Tour • July 18-19, 2020 More events and information online: ChildrensColoradoFoundation.org/events
16
CHANGEMAKERS
Help Kids and
Save on Taxes Colorado residents who make a qualifying gift* to Children’s Hospital Colorado are eligible for a generous state income tax credit of up to 25%.
Olivia had a liver transplant as a baby
LEARN MORE about the Colorado Enterprise Zone Tax Credit at ChildrensColoradoFoundation.org/EZ * In 2019, a qualifying gift is defined as an outright gift (unrelated to a special event) of at least $250 to Children’s Hospital Colorado Foundation specifically
designated toward the Enterprise Zone program in support of our Prevention and Wellness Fund, Center for Innovation, Pediatric Mental Health, Recruiting and Retention Fund, or Research Enterprise (with no sub-designations or restrictions). Enterprise Zone provides a 25% credit against Colorado state income tax if giving an outright gift of cash or a 12.5% credit for gifts of appreciated stock. This information is of a general nature and should not be construed as legal, accounting or tax advice. Every taxpayer’s situation is different, and tax laws are constantly changing. Please consult a tax advisor prior to taking any action based on this information.
Anschutz Medical Campus 13123 E. 16th Avenue, Box 045 Aurora, CO 80045
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID DENVER, CO PERMIT NO. 3978
This holiday season, there is no greater gift than hope and healing.
Donate today at ChildrensColoradoFoundation.org/give