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D O IS RA AY LO D . 5 O S C C I VE D E G on

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TRAILS WINTER 2017

A Special Message

Learn how Children’s Hospital Colorado helps asthma patients and sisters Aleya and Ahvion to breathe easier, Page 7

INSIDE Visionary programs support healthier communities, Page 4 Philanthropy fuels medical breakthroughs, Page 10 Donor supports healing through play, Page 16


Join Us in Transforming Children's Health Dear Friends, Our community has been investing in the lives of children and young people at Children’s Hospital Colorado for almost 110 years. Today, the community is supporting the work of Children’s Colorado at greater levels than ever before through Courage is… The Campaign to Transform Children’s Health.

Barth Whitham

Campaign Co-Chair and Vice Chair, Children’s Hospital Colorado Board of Directors

Maureen Whitham Campaign Co-Chair

We believe this is because we all realize the unprecedented opportunities to impact the health and well-being of our next generation, and we have confidence that Children’s Colorado is worthy of our investment. Despite undergoing more than 50 procedures at Children’s Colorado, Kaley still has spunk and a joyful spirit

We support Children’s Colorado because we have a steadfast belief that our 3,000+ pediatric experts have the passion and the skill to reimagine child health. Children’s Colorado is treating and healing more children than at any time in our history. Last year, we served nearly 225,000 children from all 50 states and 35 countries. We are grateful to those of you who are partnering with us in this mission. Since launching the Courage is…Campaign in 2010, nearly 160,000 people have made more than 843,000 donations to Children’s Colorado. THANK YOU!

Laura Barton

Campaign Co-Chair, Children’s Hospital Colorado Foundation Trustee, and Children’s Hospital Colorado Board Member

As we near the $320 million mark toward our $400 million Campaign goal, philanthropy is impacting more children than ever. One example is a spunky 9-year-old named Kaley, who has undergone more than 50 procedures at Children’s Colorado. Read about Kaley and other remarkable children who have been impacted by your philanthropy at www.CourageIs.org. Momentum is certainly on our side. We invite you to be a part of creating bright futures for our children.

Today, more than ever before, our goal of giving children healthy futures is within reach. Will you join us?

Laura Barton Barth and Maureen Whitham Campaign Co-Chairs

Ron and Cille Williams Honorary Campaign Co-Chairs

Ron Williams

Honorary Campaign Co-Chair, Children's Hospital Colorado Foundation Trustee, and Honorary Lifetime Director of the Children's Hospital Colorado Board of Directors

Cille Williams

Honorary Campaign Co-Chair


INSIDE

Transforming Community Health Children’s Hospital Colorado leads visionary initiatives to support healthy kids through community partnerships, Page 4

8 Voices of Courage

Featuring letters from patient ambassador parents to their children

14 Play That Heals

Endowment gift to Child Life Program helps families to cope with stress and fear

Donor-Fueled Discoveries Philanthropy powers research breakthroughs at Children’s Hospital Colorado, Page 10

16 40th Anniversary Children’s Gala Raises Millions Highlights of the elegant affair

ACKNOWLEDGMENTS The Courage is... magazine is a biannual publication of Children’s Hospital Colorado Foundation, a nonprofit organization dedicated solely to advancing the mission of Children’s Hospital Colorado. Editors: Megan Lane, Michele Murray Contributors: Steve Winesett, Madeline Schroeder, Erin Bodine • Design by Straightline Design Financial and other information about Children’s Hospital Colorado Foundation’s purpose, programs and activities can be obtained by contacting 720-777-1700 or info@childrenscoloradofoundation.org. For a complete list of state disclosure requirements, visit www.childrenscoloradofoundation.org/disclosures. To opt out of mailings from Children’s Hospital Colorado Foundation, please call 720-777-1700.


THE

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Part 2

Celebrating Courage, Generosity and Momentum

Few places impact more lives than Children’s Hospital Colorado. It is truly difficult to describe just how remarkable this place is. I am privileged each day that I get to walk the halls of Children’s Colorado. Often I am with visitors who are learning more about the impact of their philanthropic investments. Many times, they are initially a bit apprehensive about what the experience will be like. After all, it might seem tough to tour a place full of children facing unimaginable health challenges. But very quickly their apprehension turns into intense admiration. They are simply in awe of this place and the experts who care for our community’s children. The truth is, most of our visitors are surprised to find that the pervasive feeling throughout the hospital is actually hope. Here, it really is different. They almost always comment about how the building is full of light and color that seem to embrace and encourage you. They notice that the art is curated in such a way as to create an environment where health and healing can thrive. Our visitors are in awe of the courage and inspiration they observe on the faces and in the spirits of the children and their parents. They marvel at the expertise of our caregivers and the humility with which they build sacred relationships with the patients and families they serve. We chose courage as the theme of our current philanthropic campaign for a reason – it is one of the most distinctive characteristics of Children’s Colorado. Next year, Children’s Colorado will celebrate its 110th anniversary. So much has been accomplished for the health and wellbeing of our patients in these years. But it is clear that our work throughout this next decade will create even more incredible breakthroughs and impact children not only in the Rocky Mountain region, but around the globe. That’s why your support of Courage is... The Campaign to Transform Children’s Health is so important – and greatly appreciated. Momentum is on our side. And so is a generous community. Thank you for being a critical part of these accomplishments. Courage thrives here! Steve Winesett President and CEO Children's Hospital Colorado Foundation

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Children’s Hospital Colorado

IN THE NEWS

Children’s Hospital Colorado Celebrates 50th Endowed Chair Since 1997, generous donors have been establishing endowed chairs at Children’s Colorado as a way to support our world-class providers and advance groundbreaking research. These gifts of $2 million or more provide a steady stream of support for our team, allowing chairholders to transform pediatric health care in extraordinary ways. In August, Children’s Colorado celebrated its 50th endowed chair: the Tanner and Ellie Seebaum Endowed Chair for Palliative Care. Donors Carol McMurry and Patrick Spieles created the endowment in honor of their beloved grandchildren. We extend our gratitude to all endowment donors whose generosity and commitment make new treatments and cures possible.

From left: Ellie, Matt and Stephanie Seebaum, Carol McMurry and Patrick Spieles with chairholder Brian Greffe, MD

5280 Magazine Names Children's Colorado 'Top Docs'

Dr. Dunbar Ivy, Selby’s Chair in Pediatric Cardiology, was honored in 5280’s Pediatric Cardiology category

Caregivers at Children’s Colorado put their heart and soul into providing the best care for children. We congratulate 117 of our doctors on making this year’s 5280 magazine “Top Docs” list. In compiling the list, the magazine surveyed Denver-area doctors, asking them which physicians they would trust to treat themselves and their families. In addition, 58 pediatric dentists at Children’s Colorado made 5280’s “Top Dentists” list in 2017.

Children’s Colorado Recognized for Technology Tools Technology makes it easier for patients and providers to interact, which improves communication, safety and patient-provider relationships. That’s why we’re proud that Children’s Colorado has been named a “Most Wired” hospital for the fifth consecutive year. According to the 19th annual Health Care’s Most Wired® survey, “Most Wired” hospitals are using smart phones, telehealth and remote monitoring technologies to create more ways for patients to access health care.

"This award continues to be a benchmark for how we leverage technology throughout Children’s Colorado to ensure we are providing the best care possible while remaining strategic with emerging technologies,” said Dana Moore, senior vice president and chief information officer at Children’s Colorado.

The Power of Digital Fundraising in Your Hands We’re pleased to announce the launch of Crowdfunding for Children’s Colorado, an online platform that empowers you to fundraise using your social networks. Similar to Kickstarter and GoFundMe, the new platform encourages you to ask friends, family and other contacts to support the projects that mean the most to you at Children’s Colorado. For more information, visit www.childrenscoloradofoundation.org/ crowdfunding

www.courageis.org

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REACHING Beyon Children’s Hospital Colorado leads visionary initiatives to support healthy kids and communities

Lah Say Wah remembers the day she walked into the home of a recently resettled refugee family to find a box of eggs in the freezer and a carton of milk on the kitchen floor. “It makes sense,” explains Lah Say. “Some families don’t know how to use a refrigerator, but how could we expect them to when they’ve never owned one before?” As a Community Health Liaison for Children’s Hospital Colorado, Lah Say frequently encounters families who are struggling with daily challenges that extend far beyond their medical needs. Her job is to educate these families and connect them to local resources they need to thrive. The program is one of the many ways that Children’s Colorado is partnering with the community to transform kids’ health beyond the walls of a clinical setting. By meeting families where they are – namely in their homes and schools – and working to address the underlying causes of poor health, Children’s Colorado is implementing a bold vision to bolster healthy kids and communities in extraordinary ways. “We have to think about the whole child,” explains Heidi Baskfield, JD, vice president of population health advocacy at Children’s Colorado. “Studies show that 80 percent of the factors influencing kids’ health take place outside the health care system. Our vision is to build a network of community partners to get kids the right service in the right place at the right time.” Children’s Colorado has long recognized the critical role that prevention plays in improving health outcomes – and how factors like poverty, education, home dynamics and unsafe communities can negatively impact a child. By taking the lead in building partnerships with like-minded community organizations, Children’s Colorado aims to create new models of care that can change the lifelong health trajectories of children across the region – and keep kids out of the hospital. “In community-based settings, you can engage in true prevention work,” says Baskfield. “Supporting kids outside the clinical realm means that we can have a stronger and more consistent impact on children.”

DONORS MAKE A DIFFERENCE Last year, Mrs. Bea Taplin, a Lifetime Director of the Children’s Hospital Colorado Board of Directors, made a generous $5 million gift to Children’s Colorado to kick-start this transformational vision. The investment is being used to establish pilot programs that are already making an impact on local families. For example, Mrs. Taplin’s gift, along with gifts from the Colorado Health Foundation and the BUILD Health Challenge (a national multi-sector partnership), help to support a team of eight Community Health Liaisons, including Lah Say. The multi-lingual liaisons meet with

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Supporting kids outside the clinical realm means that we can have a stronger and more consistent impact on children. - Heidi Baskfield, Vice President of Population Health Advocacy


nd Our Walls

families in their homes, helping them to navigate issues like public transportation, access to food and health insurance. Early data show that emergency room visits among participating families decreased after working with Community Health Liaisons – evidence that the program helps families to better manage their children’s health. “Our liaisons give parents advice and support without making them feel judged,” explains Baskfield. “This model creates economic opportunity by giving families access to resources, while also lowering health care costs.” Baskfield plans to expand the Community Health Liaison program into Colorado Springs. After that, with the help of philanthropy, she envisions broadening the program beyond the high-risk populations it currently targets to reach families across the seven-state region served by Children’s Colorado. “Parents can use our support regardless of their situation,” she says. Continued on page 6

www.courageis.org

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PARTNERING WITH SCHOOLS

PHILANTHROPY MAKES IT POSSIBLE

In addition to home-based outreach, Children’s Colorado is also building partnerships to reach kids where they spend most of their day: in schools.

Children’s Colorado has always been committed to keeping kids healthy and out of the hospital. The challenge is that most insurance reimbursement models don’t support prevention work. That’s where philanthropy comes in.

“The K-12 education system was never built to provide health care services,” says Baskfield. “We want to build tighter partnerships in school settings so that kids can seamlessly access the health resources they need wherever they are.” By providing additional support for school-based health centers, Children’s Colorado helps to ensure a whole-child approach to health in the school setting. Seeded by Mrs. Taplin’s gift, Children’s Colorado will soon pilot new partnerships with Aurora Public Schools. The program will include support, training and programming on issues like oral health, nutrition and mental health care.

“We now have the ability to create sustainable business and payment models for engaging in prevention work,” says Baskfield. “Philanthropy is needed to develop and test these programs, so we can show that they improve health outcomes. If they do, then we can talk to insurance providers about payment models that sustain these initiatives over the long term.” Children’s Colorado is one of a few institutions in the country at the forefront of these efforts. To truly scale the vision, it will take the help of philanthropic partners. It’s a complex undertaking to say the least – one that requires unprecedented levels of data collection and coordination with committed community partners. But Baskfield firmly believes that no institution is better positioned to lead the charge than Children’s Colorado. “Our overarching goal is to improve the health outcomes for children across the region,” says Baskfield. “We’re going to create the backbone of a new care model that will raise the tide for all ships.”

“We have more kids with chronic conditions, and we have fewer health care professionals available to serve them in schools,” says Baskfield. “By helping schools to better manage their students’ health, we can also improve attendance, test scores and academic performance. Everyone benefits – especially children.”

Support a Community Approach to Health Interested in supporting innovative prevention and outreach programs that keep kids healthy? To learn more, contact us at 720-777-1700 or email info@childrenscoloradofoundation.org

A WHOLE-CHILD APPROACH

Factors Impacting Child Health

Studies show that only 20 percent of a child’s health is impacted by clinical care. The other 80 percent of kids’ well-being depends on other factors known as “social determinants.” The future of pediatric health care depends on how we address and support the whole picture of a child’s wellbeing. With the support of philanthropy, Children’s Colorado is developing prevention programs and community partnerships that address a wide array of factors affecting children’s health. Donors enable us to support kids in their homes, communities and schools, so we can keep them thriving and out of the hospital.

EDUCATION

INCOME

20% 80% CLINICAL CARE

COMMUNITY SAFETY

HOME DYNAMIC

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CULTURE

BEHAVIOR


Treating Kids Where They Are Through the Step Up and Just Keep Breathing programs, Children’s Hospital Colorado works with community partners to support kids in their homes and schools. These types of prevention and outreach programs are possible with the support of philanthropy. Here, two families share how they have benefited from innovative partnerships that are designed to keep children healthy and out of the hospital.

School Partnerships Empower Asthma Patients

Home Visit Program Prevents Asthma Attacks

As a full-time student, teacher and mom of four kids, Chavonne Henry has a lot on her plate. Her children have been treated at Children’s Hospital Colorado for everything from broken bones to a congenital heart defect, and all four of them have asthma. Yet Chavonne says she’s always felt supported.

Five-year-old Naomi used to be so afraid of having an asthma attack that even talking about her condition would put her on the verge of tears. But since she started participating in the Just Keep Breathing program, Naomi can list the steps of her asthma treatment plan without skipping a beat.

“Children’s Hospital Colorado has given me resources to help me raise my children,” says Chavonne. “It’s been a major team effort.” Those resources recently became even more accessible. Last year, her youngest daughters, Ahvion and Aleya, began participating in the Children’s Colorado Step Up program. Through the schoolbased program, Ahvion and Aleya meet with a Children’s Colorado asthma educator at their local elementary school. After a clinical assessment, the girls Chavonne with her children: Dondrae, Aleya, Alexis and Ahvion review their asthma triggers and discuss what to do if either of them has an attack. Since joining the program, the sisters have had fewer asthma episodes. “It’s made Ahvion and Aleya more aware of what their triggers are, so they can advocate for themselves,” says Chavonne. “They now understand what having asthma means, and they know what to do.” A joint effort between Children’s Colorado, the Colorado Department of Public Health and Environment (CDPHE), and local school districts, the Step Up program has helped hundreds of kids to better manage their asthma with impressive results. Data show that Step Up participants had a 20 percent increase in medication adherence and a 23 percent decrease in asthma-related school absences of five or more days. “It’s great to have someone at the school monitoring my daughters,” says Chavonne. “The Step Up program has also helped me to build connection and trust with the school.” For Chavonne and others, the program isn’t only about preventing the next asthma attack – it’s about accessing the resources and support to be the best parent she can be for her family. “I’ve learned that it’s OK to ask for help,” says Chavonne. “I don’t know where we’d be without Children’s Hospital Colorado.”

“Green means I’m good, yellow means I’m not feeling well, and red means it’s time to call the doctor,” she explains confidently. A partnership with CDPHE, Just Keep Breathing started in 2016 as a home visit program for Children’s Hospital Colorado patients who have asthma. Just Keep Breathing supports patients within a 20-mile radius of the hospital who are considered high-risk, based on Emergency Department visits and inpatient admissions.

Naomi

“Going into a family’s home gives you a whole new perspective of their life – a view providers don’t get in a clinical setting,” says Elsy David, a Community Health Liaison with the program. “You have a better sense of what challenges they face. When we understand the full picture, that’s when we can truly support them.” Once a family volunteers and qualifies to participate, Elsy and her team conduct regular visits to their home over a six-month period. Not only does the Just Keep Breathing team teach families how to administer asthma medication, but they also look for asthma triggers in the home like mold or dirty air vents. Partnering with a team of providers, researchers and social workers, the program then connects the family to resources to create a healthier home. “I want to make sure that I’m giving Naomi the proper care, and this program allows me to do that,” says Naomi’s mother, Antoinette Polk. “They’ve also increased Naomi’s knowledge and confidence. Having asthma isn’t quite as scary anymore.”

www.courageis.org

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Voices

OF COURAGE

We asked the parents of three patient ambassadors to write letters to their children. Here’s what they had to say.

Dear Kaley,

child would be a We were so thrilled when we found out that our first we were about beautiful baby girl. Little did we know the journey that that our baby to embark on. At our 20-week ultrasound, we were told scared. But you girl was not going to be completely healthy. We were ts we could were our baby, and we were determined to be the best paren

Kaley

be, no matter what.

Carter

you battle That was nine years ago. Since then, we have watched surgery, you through more surgeries than we can count. After every became stronger. You remain positive through it all. We know that We love your contagious smile and positive attitude. we will be right you have more battles ahead. But we promise you that ly. We are so there next to you to fight those battles together, as a fami great things in proud of you, and we know that you are going to do this world. Love, Mom & Dad

CH I L D

A DO

ABOUT THE AMBASSADOR PROGRAM

OSPITAL CO SH N’

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Savannah

broken leg and At birth, you were broken – quite literally, you had a ado where broken arm. You were taken to Children’s Hospital Color a rare form of we stayed for several weeks. We were told that you had skeletal dysplasia affecting your bone growth.

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AM

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Every year, patients are nominated for the Children's Hospital Colorado Ambassador 2 AS Program for displaying strength and SADOR perseverance in the face of tremendous medical challenges. These brave ambassadors share their stories and represent the hospital at community events.

Tara and Paul McGill with their daughter, Kaley


Dear Carter, On April 30, 2013, our perfect little world shattered when we heard the words, “Carter has leukemia.” Never did it occur to me that my sweet, smart, Lego®-loving 8-year -old could get cancer. You were soon transported to Children’s Hospital Colorado where we met the kindest, most compassionate caregivers. They eased our fears and started treatment to save your life. You underwent three and a half years of chemo, not to mention bone aspirations, brain radiation, central lines, surgeries, severe pain, nausea, countless hospital stays and more needle pokes than a person should get in several lifetimes. As terrifying as this was, we felt blessed to be in such an amazing hospital. The doctors and nurses at Children’s Colorado embraced us and became family. Not only did they save your life, but they made the unbearable bearable. They gave us hope that you would get through this… and you did! You are now in remission. Through it all, you taught me what it means to be brave. You taught me to smile in the darkest of times. You taught me that “attitude is everything.” Watching you battle this beast has been the hardest but proudest time of my life. There is no greater gift than being your mother. I can’t wait to see you grow up and follow your dream of becoming an oncology nurse. I love you to the moon and back again. Mom

My Dearest Savannah, July 15, 2015, is a day I will never forget. It was an ordinary day, and then everything changed for the rest of our lives when a vehicle struck our van head on . I remember the fear I felt for you, seeing you hurt and not knowing what to do. Doctors told us you had suffered a spinal cord injury . They wanted to do a spinal fusion, insert a trach tube for breathing, and a feeding tube for nutrition. I don’t think I was prepared for any of it. I was so angry and frustrated, but knew I had to be strong. All I did was look at you, and I knew you had the strength to handle the new challenges . Savannah, you have taught me that all goals are achievable and that a smile can make the largest difference in everything. Even when your world is turned upside down, you can make a better life. I hope you achieve all your dreams, beginning with your therapy goals of being able to use your arms and legs again . Keep on meeting the challenges as you push right through each one. I love you. Mom

Kelly Gates with her son, Carter

Savannah with her mother, Heather, at the 2017 Children’s Gala

www.courageis.org

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Dr. Alisa Lee-Sherick

 e are true believers in the power of medical research. W When we heard the concept of a young investigators award that would provide funding for early-career researchers at Children’s Colorado – many of whom might not have access to more traditional grants – it seemed like a very worthy investment of our donation. – Donor Arlene Bobrow, who with her husband, Charles Tanabe, established an endowed fund to support early- and mid-career researchers at Children’s Hospital Colorado

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Donor-Fueled

DISCOVERIES Philanthropy powers research breakthroughs at Children’s Hospital Colorado

It’s been proven time and time again. When donors invest in research at Children’s Hospital Colorado, new treatments are identified, lives are saved and children around the world benefit. As federal research funding continues to decline, generous donors have stepped in to help. These philanthropic partners are funding research that makes a transformative difference for patients at Children’s Colorado and worldwide. Meet three physician-scientists at Children’s Colorado who, with the help of donors, are working to advance pediatric medicine in life-changing ways.

THE YOUNG INVESTIGATOR: Dr. Alisa Lee-Sherick When she started medical school, Dr. Alisa Lee-Sherick never thought she’d become a researcher. Then she spent a semester working in a laboratory. “It just clicked for me,” says Dr. Lee-Sherick. “I realized I could have a big impact on patient outcomes. Instead of following the cookbook, I could make a new recipe.” Dr. Lee-Sherick went on to complete the Pediatric Scientist Development Program at Children’s Colorado, which allowed her to pursue research while completing her fellowship in pediatric oncology. Today, with the support of philanthropy, Dr. Lee-Sherick is applying her knowledge in a laboratory, where she works to find trailblazing treatments for pediatric cancer. Dr. Lee-Sherick’s research focuses on immunotherapy, a promising new type of treatment that harnesses the body’s own immune system to fight cancer. She’s currently studying ways to energize the white blood cells known as T-cells, making them more inclined to attack cancer cells. Philanthropy has become increasingly critical for physician-scientists like Dr. LeeSherick who are a few years into their research careers. “I can’t emphasize enough how important philanthropy is to our research,” she said. “With our current federal funding environment, there simply isn’t enough money to bring new therapies to our patients. Philanthropy allows us to pursue cutting-edge ideas and outside-the-box thinking, which can result in novel treatments that no one has thought of before.” Dr. Lee-Sherick was recently awarded $25,000 from the Tanabe-Bobrow Family Young Investigator Award Endowed Fund. Established by donors Arlene Bobrow and Charles Tanabe, the fund supports early- and mid-career researchers at Children’s Colorado. “Their gift is helping to fund the data I need to apply for bigger federal and foundation grants,” says Dr. Lee-Sherick. “Having solid preliminary data increases the likelihood of getting these larger grants.”

“My research focuses on coming up with out-of-the box ways of using the immune system to fight cancer.” – DR. ALISA LEE-SHERICK

A funding boost from one of these grants could have significant implications for Dr. Lee-Sherick’s research – and for children fighting cancer. “If I can take away even one cycle of chemo, that would be very beneficial,” says Dr. Lee-Sherick. “Our patients are living longer than ever before, so anything I can do to decrease toxic side effects is a primary focus for me.”

www.courageis.org

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THE MIRACLE SEEKER: Dr. Julie Parsons Ralph Haberfeld has an ambitious goal for what he hopes Dr. Julie Parsons, a pediatric neurologist and the Haberfeld Family Endowed Chair in Pediatric Neuromuscular Disorders, will accomplish with the funds from his family’s gift. “Miracles,” said Ralph of his expectations, confident that he made a wise investment in a doctor whose research can yield wonders at an institution where hope, science and innovation intersect. Ralph and his wife, Louise, are hoping for a miracle, because their 10-year-old grandson, Rain, was born with Duchenne muscular dystrophy, a degenerative and ultimately fatal genetic disorder that causes muscle atrophy and weakness. Fortunately for the Haberfelds, Dr. Parsons is well-versed in the unique role that physicianscientists can play in turning the impossible into the possible. She’s helped to achieve astonishing transformations before – like when one of her patients, a little girl with spinal muscular atrophy, took part in a clinical trial for a new drug called nusinersen at Children’s Colorado. The child went from being unable to walk to taking dance classes. And this patient wasn’t the only one to see dramatic results. Last year, the FDA announced its approval of nusinersen to treat both children and adults with spinal muscular atrophy. Dr. Julie Parsons (left), with donors Louise and Ralph Haberfeld

“The hope is that, with treatment, these children will stabilize,” says Dr. Parsons, “Or that they will actually get stronger.”

Having already made significant progress in identifying new therapies for muscular dystrophy, Dr. Parsons’ work is far from done. She vows to put the Haberfelds’ gift to good use, knowing that it has the potential to impact thousands of children for generations to come. “It’s really impossible to convey the significance of this enduring gift to our neuromuscular community,” said Dr. Parsons. “This endowed chair is allowing me to grow our research program so that I can contemplate the next miracle for children with muscular dystrophy.”

RESEARCH FUNDING CHALLENGES Philanthropy Bridges the Gap 12

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The National Institutes of Health (NIH), the federal government’s primary source of research grants, used to fund nearly 1 in 3 research proposals; today it funds fewer than 1 in 5.

Doctors said Lexi was unlikely to ever walk. After participating in a clinical trial at Children’s Colorado, she recently signed up for dance classes.

NIH spending power has decreased by nearly 20 percent since 2003 – and deeper cuts are being considered by Congress.


THE NEURO-DETECTIVE: Dr. Tim Benke Inside the brain of a developing child are tens of billions of neuron cells, each sending out trillions of signals in a mindboggling power grid of electrical activity. But sometimes those electric signals go haywire, interrupting normal brain function and causing seizures. Understanding why that happens and how it affects the young brain is what drives Dr. Tim Benke, Director of Research in the Neuroscience Institute at Children’s Hospital Colorado. “Having seizures during childhood can adversely affect how the brain wires itself,” says Dr. Benke. “My research seeks to prevent and treat the effects of early-life seizures on the developing brain.”

Dr. Tim Benke

In 2013, the Ponzio family established the Ponzio Family Chair in Pediatric Neurology Research with Dr. Benke as the inaugural chairholder. Dr. Benke says the funds from this endowment have enabled his team to make significant progress in identifying novel treatments for seizures. For example, Dr. Benke recently helped to develop a drug aimed at desensitizing brain cell receptors following a seizure, thus minimizing potential damage to neurons.

“We think we’ve identified a brand new class of drug that can be used to prevent the long-term effects of seizures,” says Dr. Benke. “This is a perfect example of how this endowed chair has been instrumental.” So far, the drug has been used only in animals, but early results are promising, and the drug will soon be tested in clinical trials. Now, Dr. Benke is looking to donors to support the next big breakthrough in epilepsy. With the help of groundbreaking technologies and campuswide partnerships, he is devising a way to recreate a patient’s neurons and then conduct rapid, high-volume drug testing on the cells. Using this method, Dr. Benke and his colleagues believe they can test how the genetic mutations in a patient’s DNA affect the function of the neurons. This could shed light on the specific ways that neurogenetic diseases develop, which can lead to novel treatments for those with epilepsy and a range of other conditions. “This could provide a huge step forward in developing personalized medicine approaches for treating epilepsy patients worldwide,” says Dr. Benke. “Federal research funds are likely to be even harder to acquire in the future, so philanthropy will continue to be critical.”

With numerous funding challenges, the percentage of physicians who dedicate significant time to research has declined from 5 percent to 1.5 percent since the 1980s.

In 1965, the U.S. federal government financed more than 60 percent of research and development. By 2006, the balance had flipped, with 65 percent of U.S. research being funded by private interests.

Over the course of 20 years, the average age at which physician-scientists secure their first NIH grant has increased from 36 to 43, creating barriers for upand-coming researchers.

www.courageis.org

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One afternoon 15 years ago,

Dan Beekhuizen was sitting with his daughter, Stephanie, in the infusion room at Children’s Hospital Colorado. She was being treated for a brain tumor.

THAT HEALS Endowment gift to Child Life Program helps to reduce stress, restore normalcy for patients and families in the hospital

Dan heard laughter coming from down the hall. He went to investigate and discovered young patients, all with bald heads, running and giggling together. It stunned him. Despite their condition, the children were playing just like other kids. In the midst of profoundly difficult circumstances, Dan recalls feeling the most comforting sense of normalcy. “That’s when philanthropy started for me,” he said. Dan decided then and there that he wanted to help all families to experience hope and joy, no matter what they faced in their medical journeys. Giving to Children’s Hospital Colorado's Child Life Program is his way of doing that – and he’s been doing so ever since. Fast forward 16 years. Stephanie beat cancer and is now thriving as a mother of two. The family still bonds over their admiration for Children’s Colorado.

A patient awaiting a heart transplant plays with a child life specialist in her hospital room.

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With the generosity of Dan Beekhuizen (left) and the leadership of Carla Oliver (right), the Child Life Program at Children’s Hospital Colorado provides support services to patients and families.

About the Child Life Program The Child Life Program at Children’s Hospital Colorado is dedicated to helping patients and families cope during their time at the hospital.

“The place just oozes with passion. You feel it when you enter the hospital doors,” Dan said. Over the years, Dan has remained committed to helping patients and families through philanthropy. His greatest passion continues to be the hospital’s Child Life Program. The Child Life Program at Children’s Colorado helps children and families cope with the stress and fear that comes with a medical procedure, diagnosis or hospitalization. Through education, emotional support and therapeutic play, child life specialists work to reduce pain and anxiety while ensuring that families’ psychosocial needs are met. The program also helps patients stay engaged in the little things that make being a child so magical – like playing with other kids. Thanks to support from donors like Dan, Child Life services are offered to families free-of-charge at Children’s Colorado. Dan takes every opportunity he can to shadow child life specialists as they engage with patients, parents and siblings at Children’s Colorado. As his business, Keesen Landscaping Management, has grown, he recently decided to make an even bigger impact on the program.

A Philanthropic Partnership Two years ago, Dan created an endowed fund to support the Child Life Program in honor of his parents, who taught him to always help others. They were married for 64 years and passed away within a few weeks of each other in 2015. Last year, Dan made an even deeper commitment by establishing an Endowed Directorship for Child Life at Children’s Colorado – the first of its kind in the country. The Directorship will provide a steady stream of support for Child Life services and elevate Children’s Colorado as a national leader in the field. “I’ve been blessed in terms of my family, my relationships, my career and my faith,” said Dan. “I believe that having a blessed life comes with a responsibility. This gift is my small way of giving back.”

Staffed by more than 40 highly-trained specialists, the program provides a wide variety of services to reduce stress and anxiety for patients dealing with tests, surgeries and hospitalizations. Whether it’s using pretend medical equipment to help a child prepare for a procedure, teaching breathing exercises to help families relax, or leading patients and siblings through therapeutic play activities, this group of professionals makes a difference every day at Children’s Colorado. All Child Life services are available to families at no cost, and the program is substantially supported by philanthropy. Dan Beekhuizen’s gift to establish the country’s first Endowed Directorship for Child Life enables Children’s Colorado to provide support, normalcy and laughter to even more families facing unimaginable medical challenges.

The Directorship is held by Carla Oliver, who joined Children’s Colorado as the Director of Child Life in 2009. Under her leadership, the Child Life Program has developed novel treatments to calm and engage patients. For example, child life specialists recently started using virtual reality glasses as a distraction during difficult procedures. The glasses can “transport” a patient to far-off places and simulate experiences like going on a safari or flying over the Eiffel Tower. Dan’s endowment will expand these types of services, which not only improve the patient experience but also clinical outcomes. The funds will also support research efforts to develop new, innovative approaches to supporting families. “Dan has truly established a lasting legacy with this gift,” said Carla. “Because of this Directorship, we know that kids will receive our services for years to come, and all of their psychosocial needs will be met, no matter how great or how small.”

MAKE A MEANINGFUL DIFFERENCE To learn how you can change lives through an endowment gift, call 720-777-1700 or visit www.childrenscoloradofoundation.org/endowments

www.courageis.org

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40th Anniversary Children’s Gala Raises Record $2.4 Million Nearly 1,300 donors and devoted community supporters gathered for the 40th Anniversary Children’s Gala on Sept. 23, 2017. The elegant black-tie affair celebrated a history of excellence in pediatric health care and raised more than $2.4 million for Children’s Hospital Colorado – a new fundraising record for the 40-year-old event. The 2017 Gala was hosted by Andi and John Freyer, Jr. and Ginny and John Freyer, Sr. Thank you to the Freyer family, the Land Title Guarantee Company, our event sponsors and everyone who made this year’s Children’s Gala the most successful yet! 1

1. Patient ambassadors Carter, Savannah and Kaley served as emcees 2. Headlining the event was country music duo Big & Rich

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3. Laura Wright, Chair of the Children’s Hospital Colorado Foundation Board of Trustees 4. 2017 Gala Hosts: John Freyer, Jr., Andi Freyer, Ginny Freyer and John Freyer, Sr. 5. Janelle and Buck Blessing, a Foundation Trustee 6. Boettcher Society members Matt and Stephanie Seebaum with Bill Mosher and Foundation Trustee Molly Broeren 7. Steve Winesett, President and CEO of Children’s Hospital Colorado Foundation, presented with Jena Hausmann, President and CEO of Children’s Hospital Colorado

SAVE

THE DATE

Mark your calendar for these upcoming special events benefiting Children’s Hospital Colorado

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Courage is...

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ALICE 105.9 CARES FOR KIDS RADIOTHON™  FEBRUARY 8-9, 2018 Tune in to hear stories of hope and courage during this special two-day fundraising event. www.alicecaresforkids.org CLIMB FOR COURAGE  JUNE 23, 2018 Step up for kids at an annual stair climb race at U.S. Air Force Academy’s Falcon Stadium. www.childrenscoloradofoundation.org/climbforcourage COURAGE CLASSIC  JULY 21-22, 2018 Join more than 2,000 riders for a picturesque two-day bike tour in the Rocky Mountains. www.couragetours.com

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A giving spirit makes anything possible at Children’s Hospital Colorado. You can make this time of year extra special for a child who will spend the holidays in a hospital room. Bring the magic of the season to our patients and families by making a gift to our year-end fundraising effort: Give Comfort & Joy. Mail in your gift or donate online at www.childrenscoloradofoundation.org/give

THE IMPACT OF YOUR GIFT You can play a part in delivering comfort and joy to our patients.

$115 $205

can light the hospital’s holiday light display for a night.

can pay for an overnight stay for parents in our Family Resource Center.

$500 $1,000

can provide toys for patient waiting rooms, easing anxiety for children awaiting medical procedures.

can send one chronically ill child to a special patient-focused summer camp.


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

Before birth, Caleb was given a 4% chance of survival. Today, he’s a happy kindergartener who loves to read and sing.

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID DENVER, CO PERMIT NO. 3280

DONATE ON COLORADO GIVES DAY TUESDAY, DEC. 5 This holiday season, give the gift of health to kids like Caleb. Schedule your Colorado Gives Day donation to Children’s Hospital Colorado today: www.coloradogives.org/childrenshospitalcolorado

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

Profile for Children's Hospital Colorado Foundation

Campaign magazine winter 2017  

Campaign magazine winter 2017