September 2022 | Newsletter
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Meet Tanner and Caleb: two brothers with cystic fibrosis who found hope for a future at Children’s Health℠. how you can support them and their care team on September 22.
TEAMING UP FOR GIVINGNORTHTHEIRFIGHTTHEOFLIVESTEXASDAY
1 CALEB WITH MOM, KIRI
BROTHERS IN THE TOGETHERFIGHT two totally different brothers are bonded by life with cystic fibrosis
There are daily breathing treatments, which they usually spend wrapped under fuzzy blankets on the couch together watching a movie on high volume, as machines whir in the background and a vibrating vest shakes mucus from their lungs and opens their airways. And there are dozens of pills — more than 30 for Caleb — that they take every day before meals to help them digest their food. “CF makes me feel different. I stand out,” Caleb said. “In P.E., we have to run a mile every month, and I’m usually the last person to finish.”
How
Caleb smacked the palm of his hand and raised it in the air toward his older brother’s face. “You see this?” he said, pointing to his outstretched hand. His 12-year-old face was serious — too serious. You could tell he was struggling to hold back a grin. “It’s going to become your worst15-year-oldnightmare.”Tanner was quick with a spar back. “What? Your pinky finger,” he said, chuckling, before flicking Caleb behind the ear. Brothers Tanner, 15, and Caleb, 12, are like a lot of siblings. They tease and fight — all in goodnatured brotherly love. And they’re also each other’s biggest defenders. Both born with the genetic disease, cystic fibrosis, Tanner and Caleb are close — even when their disease requires them sometimes to be six feet apart. “It’s that brother relationship that I can hit him, but if anybody else does, I’m hitting them twice as hard,” Tanner said. “I’m the older brother. I watch out for him.” Cystic fibrosis — often shortened to CF — is a disease that causes severe damage to the lungs, digestive system and other organs in the body. Patients often are required to stay six feet away from others with CF to prevent the spreading of germs, which can be difficult to treat and lead to a faster decline in lung function. But for Tanner and Caleb, they’re only kept apart when they areOtherwise,sick. they spend time doing brotherly things like gaming, rollerblading and playingThere’sbaseball.currently no cure for CF, and that means the brothers spend hours each day working to live with their disease.
Initially, Tanner and Caleb’s parents, Stephen and Kiri, were told that most children with CF die very young — even in elementary school. Knowing they may have limited time with their children, they made a pact to live life differently from their friends and family. They don’t make plans for more than two weeks out. They travel across the country with their boys, taking them to New York to climb the Statue of Liberty; to both coasts to swim in the Pacific and Atlantic oceans; and to the wilderness to backwoods camp in Yellowstone and Yosemite national parks. They want their children to see as much of the world as possible — even if their disease makes it challenging to climb to the top.
HOW PHILANTHROPY HELPS CF CARE AT CHILDREN’S HEALTH
PREETI B. SHARMA, M.D. 2
Support Children’s Health on North Texas Giving Day, and you’ll have the chance to double your gift’s impact thanks AcefundsmatchinggeneroustofromHardware. CHILDRENS.COM / NTXGIVINGDAY
“We didn’t ever want to say that we let CF hold them back,” Kiri said. “We made sure that we did everything in spite of CF.” About a decade ago, the family relocated to North Texas for the boys to be treated at Children’s Health, after doctors at a previous hospital told their parents that they had exhausted their options to help then-5-yearold“InsteadTanner.of prepping for the end of Tanner’s life, we visited other hospitals and landed on Children’s Health because it is ranked highly for treating cystic fibrosis,” Kiri said. “Instantly, Tanner started to getThebetter.”Claude Prestidge Cystic Fibrosis Center at Children’s Health is a leader in the care of pediatric cystic fibrosis patients. The center incorporates a multidisciplinary approach to treating CF patients, providing families access to the best care possible, including cutting-edge treatments and clinical trials. “New treatments have altered the life expectancy for people with cystic fibrosis dramatically. People with CF are living longer, healthier lives,” said Preeti B. Sharma, M.D., the family’s pediatric pulmonologist and co-director of the Cystic Fibrosis Care Center at UT Southwestern and Children’s Health. “And we wouldn’t have made any of these advances without the support of the community to help fund research and to advance how we care for CF patients.” Despite these improvements, there’s still a long road ahead for Tanner and Caleb, who have advanced lung disease and are considering lung transplantation. But Stephen and Kiri are hopeful. They’ve started dreaming of the future — making a high school graduation plan for Tanner, saving for retirement and even buying stocks and bonds.
The Claude Prestidge Cystic Fibrosis Center at Children’s Health is a leader in the care of pediatric cystic fibrosis (CF) patients, caring for more than 300 children each year. In a recent 2021-2022 U.S. News and World Report, Children’s Health ranked among the best Children’s hospitals for pulmonology and lung surgery. Both a pulmonologist and gastroenterologist direct the Center, ensuring coordinated care for both lung and digestive health. A dedicated care team of physicians, dieticians, nurses, psychologists, social workers, and physical and respiratory therapists, support the extensive needs of CF care. This unique, multidisciplinary approach provides patients and families with access to the best care possible — including access to cutting-edge treatments and clinical trials through the Cystic Fibrosis Therapeutics Development Network, the largest CF clinical trials network in the world. Gifts to support research at the Center can help advance understanding and treatment to benefit all children with CF, not just our patients, providing hope and healing to countless children and families. Additionally, philanthropy can provide critical resources for patients and families, including program enhancements, patient and family support services, equipment and technology and education. Scan the code to learn more Children’ssupportopportunitiesabouttoCFcareatHealth.
WHEN WE GIVE TOGETHER, THE BECOMESIMPOSSIBLEPOSSIBLE.
When Tanner and his family came to us, they wanted to fight, and we wanted to fight alongside them.
“We started out thinking that our sons weren’t going to graduate high school, and now they have the possibility to live to middle age,” Stephen said. “They can live a full life. They can do anything they want.”
MEET THE TEAM MEMBERS CARING FOR TANNER & CALEB
Tanner stood in the exam room and placed a clip over his nose, readying himself for the pulmonary function test. “Have you done this before?” a man“Multipleasked. times,” Tanner said, as he took the mouthpiece from the respiratory therapist. The quarterly test measures how well his lungs are working and how much oxygen is in his blood. If the numbers dip too low, he could be admitted to the“Ready?”hospital.the respiratory therapist asked.
“Children’s Health is different from a lot of hospitals. They really care about our kids. It’s more than just health care.” A leader in treating pediatric cystic fibrosis patients, these team members care for more than 300 children each year in North Texas. And because of the support of generous donors, they provide comprehensive and innovative treatment to patients like Tanner and Caleb from birth untilWeadulthood.trackeddown 13 team members who care for the brothers and patients just like them.
THE BOYS’ MOM, KIRI
We tracked down 13 team members whose faces represent the web of support surrounding two brothers with cystic fibrosis at Children’s Health.
“It shows they care about us, and they know who we are,” Caleb said. “That we’re not strangers,” Tanner added. “They go out of their way to take care of us. They do more than theirThesejob.”are their stories. They really care about our kids. It’s more than just health care.
Kiri said.
The doctors, who a decade ago offered hope and an alternative treatment, after another hospital said the family had exhausted theirTheoptions.nurses, who decorate the boys’ hospital rooms and IV poles, comfort them at their bedside and sing to them on their birthdays.Andthe Child Life specialists, music therapists and team members in Seacrest Studios, who encourage the boys’ creativity and distract them during hospital stays with games, music and laughter.
Tanner took a deep inhale and breathed as hard as he could — as if he was blowing up a balloon — into the mouthpiece. “Push, push, push, push,” the respiratory therapist encouraged. His mom, Kiri, stood next to the machine, watching the numbers and holding her breath. Today was Tanner’s 15th birthday, and she didn’t want him to spend it in the hospital. She let out a sigh of relief. The numbers weren’t his best, but they were good enough to keep himMeanwhile,home. a crowd of care team members had quietly gathered in the hallway, holding a banner in hand drawn block letters that read “Happy Birthday, Tanner.” Clad in gowns, masks and gloves, they entered his exam room singing and clapping. Tanner — a self-described artsy nerd, who loves rollerblading, gaming and anime — couldn’t hold back a grin. This small group of team members is among the dozens in the Claude Prestidge Cystic Fibrosis Center at Children’s Health who have cared for Tanner and his andenoughpeoplewithmiraclestateTexasfamilylastbrother,12-year-oldCaleb,forthedecade,afterthemovedtoNorthfromanotherlookingforafortheirsonscysticfibrosis.“Knowingthatlovemykidstogoabovebeyondisprettycool,”
3 Team members were photographed individually and placed together as a group.
STACIE HUNTER
Alot of the times when we’re doing our exercises, kids don’t even realize we’re doing physical therapy. We use a lot of fun toys and games that we have in our therapy gym. Because of donors and their generosity, we have a cool virtual reality system that I used with Tanner and Caleb to work on their range of motion, strength, coordination, endurance, flexibility and postural mechanics. They’re doing physical therapy the whole time, but they don’t even realize that they’re doing exercises.
Food is a lot about feelings, and I’m not sure I understood that until I became a dietitian. As a dietitian, most of the work I do is with kids who have CF, both inpatient and outpatient. Nutrition plays a big role for my patients, because there are a lot of growth needs that are addressed. Developing good relationships with families is important, especially when you need to have difficult conversations with them about putting a feeding tube in their child so they can grow properly. I try to help parents understand this is not a failure on their part, but a tool to help them overcome the challenges of the disease. 4 Respiratory treatments with Tanner and Caleb.
SHAWN: We’re kind of like grandparents. Parents have rules for their kids, but grandparents get to give them sweets. This whole place is about fun. We still have structure and things we have to do, but our job is for kids to enjoy themselves and engage with them.
ABBIE KREIDER AND SHAWN PATRELLO Seacrest Studios
I want children to be confident in knowing what’s going to happen and make sure all their questions are answered to build trust and promote healthy coping skills. We do a really good job of explaining things to parents, but my role is to make sure the child understands everything.
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I’m kind of like a coach. I have to be a source of motivation to patients. I’m their cheerleader who is pumping them up and telling them that they can do this.
LAUREN HEMMERLING Physical Therapist Assistant
ALEC HERNANDEZ Child Life Technology Assistant
ABBIE: This is theyandPatientsRedbroadcastTVfull-functioningastationthatweontheBalloonNetwork.cancallintalktous,orcanuseour
ABBIE: We tend to form a special bond with families because we’re an escape. Recently, we had a patient pass away, and the family invited us to speak at the memorial and share the beauty of his life here. That really spoke to us about the impact of what we do.
Alot of patients play video games at home in their downtime for fun, so we offer them here to help normalize the hospital environment and to help them feel better. When we play games with patients, it allows us to build a rapport with them, and they realize that we’re here to offer them something fun and therapeutic. Kids will banter, and I’ll banter back with them. It’s like a patient is hanging out with one of the guys, instead of being in the hospital.
Pulmonology RN As a nurse on we’repulmonologythefloor,alighttopatients during some of their darkest days. I took care of Caleb on his birthday one year, and I remember he was really sad that he had to be in the hospital. I waited until he and his family had left the room and snuck in and hung streamers everywhere. When they came back, they were so surprised. It made me feel like I made one of his days better. To be able to make days better for patients like Tanner and Caleb and to make them laugh, those are my favorite things.
iPads and through Zoom be on TV from their hospital room. We also always have the door wide open, so they can walk in and experience the space in-person.
KATIE FOLEY Child Life Specialist We never say, “Don’t be afraid.” It’s always OK to be afraid.
Dietitian
HOPE BOSTROM
Even as adults, there are things that we’re afraid of, but our job is to take away the unknown. People say we play all day, and from the outside, it does look like play, but that’s the language of children and that’s how they communicate.
Most people think of the lungs when it comes to CF, but a big part of treating CF care is optimizing nutrition. Several studies have shown that patients with a body mass index in the 50th percentile have improved lung health and overall longevity.
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Whether it’s asthma or cystic fibrosis, my job is to help kids breathe easier and to help their families breathe easier as well. Our clinic calls CF care a team sport. We have made it our mission to provide multidisciplinary and holistic care to patients in one location. Our center is one of the only ones in the country led by both a pediatric pulmonologist and a pediatric gastroenterologist. This co-directorship also allows us to have collaborative research projects, where we work together to advance GI care and pulmonary care for CF patients. The last 10 years of my career in cystic fibrosis have been exciting. With the development of new therapies, patients have seen a dramatic improvement in their lung function and GI symptoms. And now we’re seeing life expectancy across the board being closer to the late fifties. That’s a big difference.
There are so many new and exciting therapies coming up in CF care. I tell parents and children that I’m not aiming for them to live to be 20 or 30 years old but for them to be grandparents.
One of the biggest challenges children with CF face is pancreatic insufficiency, which means their pancreas doesn’t make any and/ or enough enzymes needed to digest food. To treat this, we give our patients pancreatic enzymes orally to replace what their bodies are unable to make. They have to take pancreatic enzymes with every meal and every snack.
PREETI SHARMA, M.D. Pediatric Pulmonologist and Co-Medical Director of the Claude Prestidge Cystic Fibrosis Foundation Clinic at Children’s Health
BEN RETTA Senior Director, Social Work I’ve worked at Children’s Health for 23 years. I’ve seen a lot of evolution in the social work department, but it’s always been about helping families cope with new diagnoses, unexpected accidents and unexpected hospitalizations. Our work is about the entire wellness of the family, not just the physical wellbeing of the Whenchild.Iwas a high school intern, I didn’t know about cystic fibrosis. I met the CF social worker at the time, and one of the things she explained to me was that CF patients didn’t live beyond 13 years old, and it was important for her to build a relationship with the family to help them through that journey. Now, in 40 short years, that is not the story for CF patients today. They are living well into adulthood. But they still need someone there to tell them what to expect and to tell them that it’s OK if they don’t understand everything.
MEGHANA SATHE, M.D. Pediatric Gastroenterologist and Co-Medical Director of the Claude Prestidge Cystic Fibrosis Foundation Clinic at Children’s Health
REANN TIEMANN Chaplain, Spiritual Care and Education
We help children tackle the tough stuff, from critical disease to everyday illness. We combine our individual strengths to make life better for children — no matter what they Together,face.we provide extraordinary care. And as a donor, you’re a valuable part of our team.
CANDACE SZYMANSKI Music Therapist I first met Caleb while he was in-patient for a lengthy stay. He’d play around on instruments, and we wrote songs together. Many of the songs were funny or silly ones that allowed us to laugh, while also giving him a sense of normalcy. One of the best parts of my day is seeing patients experience breakthrough moments. After a session, families will tell me how that was the first time they’ve seen their child smile or the first time their child has wanted to get out of bed. It’s very powerful. Our music therapy services are expanding, and I recently transitioned to Children’s Medical Center Plano. Right now, it’s only me, but soon we hope to have a full music therapy program there. Donations are essential to grow our program and reach more patients and families.
B
VARGHESE
I’m always careful not to tell a child what it is that they feel. Instead, I help them process their own feelings and experiences. I tell them that while the clinical team is taking care of their medical needs, my role is to care about what’s happening on the inside with their emotions. At Children’s Health, I am assigned to work with pulmonology patients, which includes a large population of kids with CF. For these patients, they know they will have this illness for the rest of their lives, and that there’s no cure. As chaplains, we’re quite comfortable with talking about how their life will be shortened because of thisMydisease.bestdays in the hospital are when a patient I’m working with feels seen, heard and valued.
Sometimes I just tell people that I’m a good professional listener.
PRIGI Nurse Practitioner
Your support helps us fund clinical and laboratory research that is leading to big discoveries to help children in our community. You help us enhance and expand our facilities, providing better care closer to home for families. And you help us advance an initiative to tackle the pediatric mental health epidemic from a new lens. If you’d like, you can make your gift sooner when early giving opens on Sept. 1.
Give on North Texas Giving Day, and your gift has the opportunity to be doubled thanks to generous matching funds from Ace Hardware. When we give together, the impossible becomes possible. Scan the code to learn more about doubling your gift during North Texas Giving Day or visit CHILDRENS.COM/NTXGIVINGDAY
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eing a kid with CF is like having a second job. They have to manage school. They have to manage being a kid. And they have to manage their CF.
We hope you’ll join us in supporting our mission on Sept. 22 for North Texas Giving Day — an 18-hour community-wide giving day where nonprofits across North Texas raise awareness and funds for their organizations.
It’s helpful that Tanner and Caleb have each other to keep one another motivated. Both fall into this category of advanced lung disease, and they’re being considered for lung transplantation. That’s one of the more difficult conversations. The other hard part of my job is CF is now detected through newborn screenings, and I am the one who gets those results and makes the call to the parents telling them that their child has a chronic illness that doesn’t have a cure. But because there is no cure for CF, funding for research is critical. That’s where we’re making the advances that are changing patients’ lives, and that’s where we’re going to come up with better treatments.
He underwent 10 minutes of CPR and had to have an emergency tracheostomy to save his life. “At that time, we were very hopeful that his tumor was the type that would respond nicely to chemotherapy, and that would make it easier to treat with radiation, which are both treatment options for rhabdomyosarcoma,” Dr. Campbell said. “Unfortunately, 12 weeks after starting chemotherapy, we found that the tumor had not responded, and it had actually grown through the chemotherapy.”
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Searching for better treatment options for his patients, Matt Campbell, M.D., has launched a clinical research study to advance pediatric cancer care.
Lincoln — who already as a toddler has the arm of a baseball pitcher — had experienced a dramatic entry into Children’s Health, after the tumor blocked his airway during a MRI and put him in cardiac arrest.
Matt Campbell, M.D., calls Lincoln a miracle Diagnosedkid. with rhabdomyosarcoma — a rare type of cancer that forms in soft tissue — 2-year-old Lincoln had just begun initial rounds of chemotherapy to shrink a golf ballsized tumor on the back of his tongue when Dr. Campbell met him last year.
Dr. Campbell and his fellow physicians had never seen this type of cancer not respond — even if only temporarily — to treatment, and he was worried. He knew at this point there were few chances for a cure and not many options to offer the family. “Lincoln is here despite the odds, and it’s incredible,” Dr. Campbell said. “But I have other patients whose cancers come back or don’t respond, and they can’t be removed. In those cases, we really have no options.”
THE PAULINE ALLEN GILL CENTER FOR CANCER AND BLOOD DISORDERS 8
The moment when Lincoln’s tumor grew — so big that he couldn’t breathe through his mouth and struggled to breathe through his nose — was one of the scariest for Lincoln’s parents, Shelly and Chris. “That was a real punch in the gut,” Chris said. “He’d look up at us, as if he was saying, ‘Help me,’ and we were doing everything we could to fight this.” After Lincoln’s last dose of radiation — knowing this wasn’t the solution they thought it would be — they took their youngest son home, where he accidentally bit into the tumor and blood filled his tracheostomy tube. “We were flying in the ambulance to Children’s Medical Center Plano, and I remember my older son asking me, ‘Mommy, is Lincoln going to die?’” Shelly said. “I of course said no, but I honestly didn’t know what the answer was at that point.”
One of the only alternatives for Lincoln was surgery to remove the mass from the back of his tongue, but it was risky. The eighthour operation would involve removing most of his tongue, which would impair his ability to eat and “Nobodyspeak.wants to remove something crucial to your child’s life, but we had exhausted most of our options at this point,” Shelly said. Frustrated by the lack of options for patients like Lincoln, Dr. Campbell has launched a clinical research study for patients with solid tumors that have either not responded appropriately to their first round of therapy or whose cancers have relapsed. “Compared to about 40 or 50 years ago, we’ve made a lot of advances in our ability to cure children with cancer,” Dr. Campbell said. “Unfortunately for some children, we have very few, and in some cases, no good treatment options for them. I feel strongly that this is not adequate, and we need to do better.”
cancerPlano,MedicalChildren’sCentersignalingtheendofhistreatment.
Dr. Campbell’s trial will utilize new drugs called immune checkpoint inhibitors, which leans on a discovery that a patient’s immune system can work to fight the cancer and the inhibitor blocks the tumor’s ability to fight back. It’s a medication that has been successful in treating adult cancer patients, but when applied alone, it has not worked in children. Knowing this, Dr. Campbell will combine these chemotherapyinhibitorscheckpointwithto make the tumor more susceptible to the patient’s immune system working to fight off the cancer and handcuff its ability to resist.
“It’s taking care of Lincoln and patients like this that really fuels me to do this research; to have these types of clinical trials; to be able to offer our families something that I really believe can help them,” Dr. Campbell said. “And to be able to offer them some hope.” The study is supported by donations to Children’s Health, including a grant from Children’s Cancer Fund, which helps fund researchinnovativestudies in the Pauline Allen Gill Center for Cancer and Blood DonationsDisorders.likethis are critical to the advancement of the Gill Center to support investments in Earlier this year, Lincoln rang the bell at
9 research so that Children’s Health can continue to offer the best treatment options for patients like Lincoln with cancer and blood disorders. Earlier this year, Lincoln rang the bell at Children’s Medical Center Plano, signaling the end of his cancer treatment. And for the first time in a long time, his parents breathed a sigh of relief. “When that day came, it almost didn’t feel real. There were moments when I didn’t know if we would reach this point,” Shelly said. “I thought I was going to be really emotional that day, but instead, I felt at peace.”
AT CHILDREN’S HEALTH WHAT TO KNOW ABOUT
&ONCOLOGYPEDIATRICHEMATOLOGY
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September is National Sickle Cell Awareness Month and Childhood Cancer Awareness Month. Please consider donating in honor of our patients with sickle cell disease and cancer and our team members who care for them every day by visiting donate.childrens.com/donate. 6,000 servedpatients 750 patientsnewpediatric cancer survivors received care in the After Cancer Experience (ACE) Program 3,000+ active clinical research trials sustained and grown through philanthropy that helped improve the understanding, prevention, diagnosis, or treatment of childhood diseases 200 patients enrolled in pilot program to sequence next generation tumors from high-risk oncology patients 400
The Pauline Allen Gill Center for Cancer and Blood Disorders at Children’s Health continues to serve as a beacon of hope for children and families within our communities, throughout Texas and across the country. Not only is the Gill Center a leader in patient care, treatment, research, nursing and staff education, and training in pediatric oncology and hematology, but its affiliation with UT Southwestern and the Harold C. Simmons Cancer Center brings national and international expertise, which sets the Gill Center apart from other sites for pediatric cancer care in the region. From common blood disorders, such as sickle cell anemia, to the rarest forms of cancer, the Gill Center continues to offer comprehensive evaluations, innovative treatments, long-term care, and access to the latest clinicalPatients,trials.like Lincoln, and their families continue to receive incredible psychosocial support through dedicated programs like child life, social work, spiritual care, language interpretation and more, made possible thanks to philanthropic support. Additionally, the Plano campus expansion, which includes an increase in cancer and blood disorder services and specialties, continues to see tremendous momentum and support from our community. Because many of our UTSW physicians actively research and hold leadership positions within the national research community, we are able to study, access, and offer the very best treatment options for cancer and blood disorders. Philanthropic gifts and resources have been and will continue to be crucial to the advancement of the Gill Center, supporting clinical and research excellence, along with top-notch support programs for our patients and families.
THE GILL CENTER BY THE NUMBERS IN 2021
11 Harvey Price was 15 years old the first time he saw her — the only girl sitting in the back rows of his homeroom class in 1955 at Waco High School. “And I thought to myself, ‘That is somebody I want to get to know,’” he said of Lanell, who had moved to Waco that year to live with her aunt and uncle. For three years, the pair were best friends, trading their sandwiches at lunchtime. Harvey’s was always goose liver and onions. And Lanell’s was always bologna and mayonnaise. After high school, they went their separate ways. They married other people and had their own children. But six decades later, after their spouses passed away, a high school reunion publication brought them together. And when Harvey landed at the airport in Dallas, it was like no time had passed. “I saw him coming through the gate, and he was just like the boy I remembered from high school,” Lanell said. In 2013, the couple were married at the McLennan County Courthouse, less than half a mile from the old Waco High School where they met. Now in their 80s and wanting to leave behind a lasting legacy, they established the Edith Lanell and Harvey L. Price Jr. Endowment Fund for Clinical Research through a planned estate gift to Children’s Health. After high school, Harvey pursued a career as a physical therapist and worked with pediatric patients. Later, he went back to school to study pulmonary and respiratory care and did research studying sleep disorders. His work brought him opportunities to study and train at Stanford University and to do research for the National Institutes of Health. “Anybody I’ve ever met in research has this gleam in their eyes because they know they’re touching the unknown, and that is exciting. Research is the frontier of discovery, and we wanted to be able to support that through our funds,” Harvey said.
THE FRONTIER
Growing up a couple of hours from Dallas, the couple were aware of the mission of Children’s Health to make life better for children in the North Texas community and beyond. Lanell and her first husband also lived in the Dallas area and volunteered as Mr. and Mrs. Santa Claus for several years at Children’s Health in the “We1990s.hada real affection for Children’s Health and knew that the team there led incredible research,” Harvey said.
“We wanted to create something that would live on after us and help others. This gift makes us very proud,” Harvey said. “We didn’t care about having our name engraved on a wall, but it does give us a sense that we were here, and that we made a difference.” We wanted to create something that would live on after us and help others. This gift makes us very proud.
HARVEY PRICE
The couple’s generosity will support unrestricted clinical research, which helps fund the uncharted journey of scientists to discover breakthrough treatments and allows Children’s Health to be on the cutting-edge of pediatric Year-round,medicine.thereare worthy clinical research projects at Children’s Health with the potential to change lives that require funds to move forward. Philanthropic support for launching meritorious projects is crucial to fostering these initiatives and innovations.
Our thoughts are with the Price family after Lanell entered hospice care in August. We wish you peace during this time.
Harvey and Lanell Price make planned estate gift to support clinical research at Children’s Health OF DISCOVERY
C hildren’s Health wants to help you make the most of this opportunity. Ensuring that your loved ones and causes you care about are protected brings peace of mind. Below are answers to common concerns about making an estate plan: 1. It’s too early for me to think about my will! We hope you won’t need to use it for many years, but it is never too early to start planning ahead.
Open enrollment is a great time to check that your beneficiaries on your retirement plan and life insurance are up to date. When you do this, it’s simple to add a charitable gift as a fixed amount or percentage.
C linical research puts theories and basic science research into action that can benefit patients at the bedside. Children’s Health is a leader in clinical research, and significant breakthroughs have been made at Children’s Health because of our ability to conduct this research. Currently, there are more than 1,200 active research studies at Children’s Health, with nearly 13,000 patients enrolled. For many of these children, it is their last hope at treatment for their illness, and philanthropic support remains the essential catalyst for facilitating new and innovative ideas for clinical research at Children’s Health. Year-round, there are worthy clinical research projects at Children’s Health with the potential to change lives that require funds to move forward. Philanthropic support for launching meritorious projects is crucial to fostering these initiatives and innovations. 12
2. I planned my estate a couple of years ago, so I’m set. Have you acquired property? Do you have children? Life changes fast, so it is recommended that you update your will and beneficiaries at least every five years.
THE PRICE FAMILY ENDOWMENT IN SUPPORT OF CLINICAL RESEARCH AT CHILDREN’S HEALTH • Targeting inflammatoryduringimmunehaveimmaturepediatricsuppressormyeloid-derivedcells(MDSCs)intumors.MDSCsaremyeloidcellsthattheabilitytosuppressresponsesandexpandcancer,infectionanddiseases. • Fetal congenital heart disease • Tumor sequencing for high-risk oncologypediatricpatients • Anesthesia patient safety for pediatric COVID patients • Neonatal and pediatric ECMO monitoring • Sport-related concussion recovery in adolescents • Brain injury in extremely preterm infants • Exploring the cellular landscape in pediatric obesity • Evaluating and ambulatoryamonginterventioncommunicationstrengtheningandpracticemethodsprovidersinpediatricclinics
4. What else do I need to know?
NATIONAL ESTATE PLANNING AWARENESS WEEK OCT
IS A LIST OF SOME AREAS OF CLINICAL RESEARCH THAT WERE LAUNCHED OR ADVANCED BY PHILANTHROPY IN 2021
To learn more about estate planning or how to support Children’s Health through your will, please contact: Nicola Lawrence | Director of Legacy and Gift Planning Nicola.Lawrence@childrens.com | 214.456.8360 Giving a gift in your estate plans does not cost you anything today but will create a sustainable future of world class care for children in North Texas and beyond. If you don’t have a will, you can create one for free at childrens.com/mywill
3. Estate planning is always so expensive. It can be, but Children’s Health has partnered with a free, online resource that guides you through the process of creating a legally valid will in 20 minutes or less. You will also find beneficial tools to help you create a holistic plan, such as a power of attorney.
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Eventually, these new organoids may allow scientists to test drugs for patients as they undergo cancer treatment, a step toward highly personalized brain tumor care. “Very few centers have the capacity to perform this type of research. Close collaboration between the Department of Neurological Surgery and CRI and support from the O’Donnell Brain Institute and the Simmons Comprehensive Cancer Center allowed us to connect the operating room directly to the lab and collect and process brain tumor samples quickly to perform this time-sensitive research,” Dr. McBrayer said. “Together, we were able to produce this breakthrough in brain tumor modeling that would not have been possible if basic scientists and clinical scientists were working alone.” RESEARCH INSTITUTE
Samuel McBrayer, Ph.D., Assistant Professor at CRI
S cientists in the McBrayer lab at the Children’s Medical Center Research Institute at UT Southwestern (CRI) have developed a technique that, for the first time, allows a deadly type of brain tumor to exist outside the body and be studied in the laboratory. The new model offers researchers the opportunity to study how the microenvironment influences brain tumor biology, as well as test promising new therapies for glioma. Low-grade gliomas (LGGs) are among the most common malignant brain tumors affecting young adults. Resistant to chemotherapy and difficult to treat, they invariably progress to high-grade gliomas (HGGs), which carry a 5-year survival rate under 5%. The inability to accurately model LGG is a major factor contributing to the lack of progress in developing effective new brain tumor therapies. To address this problem, Dr. McBrayer and his collaborators identified key metabolic conditions that allowed LGG tumor samples to be successfully propagated in the laboratory setting. “We worked with our partners in the Department of Neurological Surgery to obtain tumor tissue from patients undergoing brain tumor resections. We then used that tissue to create miniature versions of these tumors, called organoids. This new model allows us to dig into every aspect of any molecular or chemical weakness that might be a target for new cancer drugs and study the diverse cell populations that make up the tumor,” said Samuel McBrayer, Ph.D., Assistant Professor at CRI.
FIRSTLABGROWNBRAINMALIGNANTCHALLENGINGTUMORSINTHEFORTHETIME
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FUNDING AIMS TO GATHER INTERNATIONAL TEAMS TO SOLVE CANCER’S BIGGEST PROBLEMS CHILDREN’S RESEARCH INSTITUTE CHALLENGESGRANDINGLOBALWINNINGPARTRESEARCHERSUTSWOFTEAMCANCER Sihan Wu, Ph.D. and Zhijian Chen, Ph.D. THE FOROVER$25WILLGRANTPROVIDEMILLIONFIVEYEARSCANCERRESEARCH 14 Two UT InflammationandProfessorcancertoentrustedaofincell’sDNA(ecDNA)asaboutGermanyfromSihanZhijian$25provideNationalCancerofawardChallengesbeenaresearchersSouthwesternarepartofglobalteamthathasawardedaCancerGrandgrant—auniquethataimstosolvesomecancer’stoughestproblems.Theinitiative,foundedbyResearchUKandtheCancerInstitute,will£20million—aboutmillion—overfiveyearsto“James”Chen,Ph.D.,andWu,Ph.D.They’llworkwithcolleaguestheU.S.,theU.K.andtolearnmoreaphenomenonknownextrachromosomalDNA—circularpiecesofthatexistoutsideofamainDNAboundtogetherchromosomes.“It’sagreathonortobepartthisstellarteam,butit’salsolargeresponsibilitytobewithalotofresourcessolveadifficultprobleminbiology,”saidDr.Chen,ofMolecularBiologyDirectoroftheCenterforResearchatUTSW, a Howard Hughes Medical Institute Investigator and winner of the 2019 Breakthrough Prize in Life Sciences. Dr. Chen is one of the world’s leading investigators into innate immunity. His discovery of the cGAS (cyclic GMP-AMP synthase) enzyme, which triggers a pathway that activates the body’s immune system, has opened the door for development of drugs designed to modulate an immune response and fight diseases such as lupus andDr.cancer.Chenand Dr. Wu, an Assistant Professor at Children’s Medical Center Research Institute at UTSW, plan to use the funds from Cancer Grand Challenges to better understand whether cGAS detects ecDNA. One of the mysteries of ecDNA in cancers, explained Dr. Chen, is why it doesn’t trigger immune activity. The two scientists aim to discover what mechanisms cancer cells use to evade immune detection, which eventually could lead to new ways to treat cancers with immunotherapy.
How a new Ace Hardware in Plano is building a culture of fundraising to support Children’s Health S everal years ago, Mansoor “Max” Ali and his wife were looking for a great place for their kids to grow up and run a business. But Mansoor didn’t want to be just any business owner. He wanted to run a store that was a catalyst for giving back. In 2016, his family moved to Plano, and a couple of years ago, Mansoor opened the city’s first Ace Hardware, which partners with Children’s Miracle Network Hospitals (CMN) to direct money raised through fundraising campaigns to pediatric hospitals like Children’s Health.
“I can’t think of a better cause.”
15 OF GIVING ‘ATOCELEBRATIONOTHERS’
“It’s motivating and gratifying to know that every dollar our store raises goes directly to Children’s Health, to the doctors and nurses at the hospital where we live,” he said.
“Through Ace Hardware and Children’s Miracle Network Hospitals, I’m able to fulfill both of those priorities.” 16
SUPPORTING AN ESSENTIAL
L ike many parents, Mansoor said having a top-tier pediatric hospital nearby gives peace of mind to him and his wife “When you decide where to raise your family, two of your biggest priorities are access to quality education and healthcare. I’m fortunate to have kids who are healthy, but if they ever get sick or injured, I know Children’s Health will be ready for whatever they need,” he said. “Through Ace, I’m supporting the resource I want to ensure is available for my children and every child in our community.”
Reflecting on the last couple of years, Mansoor said his greatest success is showing his kids that it’s possible to live your values at work and at home.
RESOURCE FOR ALL FAMILIES
It’s important for us to help others live a qualitybetteroflife.
“Our family is Ismaili Muslim, and in our faith, we prioritize unity and goodwill. It’s important for us to help others live a better quality of life,” he said.
“Every dollar we raise represents a community member who is stepping up to help the kids who need it at Children’s Health,” Mansoor said.
MANSOOR “MAX” ALI USING NORTH TEXAS GIVING DAY TO BUILD A CULTURE OF PHILANTHROPY M ansoor’s store is in its second year and fundraising through CMN has played a big role in helping his team build connections with the Plano“Whatcommunity.Ilikeabout our campaigns is that they’re a celebration of giving to others as much as they’re about raising money,” he said. “We love that right when a customer walks in the door, they know we’re raising money for kids.” Last year, North Texas retailers such as Ace Children’s$145,079collectivelyHardwareraisedforHealth.
withAmandaVan
One of the hospital’s first facility dogs and handlers, Van and Amanda helped pioneer the pet-therapy program at Children’s Health, providing comfort and support to many patients.
Amanda Ammons receives national award for her work as a child life specialist from Ace Hardware and Children’s Miracle Network Hospitals
Child Life is an essential offering in the hospital that receives no external support aside from philanthropy. Team members in the department — which include child specialists,life child life andassistantsmusic therapists — work alongside medical staff to ensure a positive hospital experience for patients and families. These programs include music therapy, pet therapy, play activities and comfort toys and tools. “My role is to come in and help that child and family cope with the hospital,” Amanda said. “The work we do as child life specialists to translate the hospital for patients and families and empowering them to support themselves is so important.” Amanda joined Children’s Health in 2010 and has been working as a child life specialist helping all the hospital’s pediatric trauma patients since 2019. Prior to that, she worked in a clinic for at-risk children with HIV, low birth weight, infectious diseases or who were victims of childAndabuse.formuch of that time, she’s had her best friend — a golden retriever pet therapy dog named Van — by her side.
The hospital experience is challenging. Then you add on the trauma for why the child is in the hospital, such as a car accident or a gunshot wound. My role is to come in and help that child and their family cope with the hospital. I help them understand what’s happening, whether that’s procedural support, diagnosis education, medical play and helping patients and families advocate for what they need.
TRANSLATINGTHEHOSPITALFORPATIENTS
In March, she was honored with the 2022 Child Life Specialist Award from Children’s Miracle Network Hospitals and national corporate partner Ace Hardware. As part of the celebration, Ace Hardware donated $20,000 to the Child Life Department at Children’s Health.
In June, Van passed away from complications due to cancer. Amanda also has played a critical role in developing a Child Life Zone at the medical center, consulting on the design of the area for hospitalized children to learn and play, choosing every game and toy, and later planning all its therapeutic activities after opening.
In the chaos of the hospital, Amanda Ammons is a face of reassurance to pediatric patients and their families. For more than a decade, Amanda, a child life specialist at Children’s Health, has helped children navigate the unthinkable — child abuse, sexual assault and trauma, translating complicated medical terms in a way patients understand.
“Amanda’s passion for helping children has taken many different forms during her career at Children’s Health,” said Susan Lakey, Director of Family Support Services at Children’s Health. “But no matter where she has served, she’s always exhibited genuine love and concern for our patients.”
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Below, Amanda shares more about her work as a child life specialist and her passion for advocating for children. Why is the role of a child life specialist important?
*Using matching funds provided through prior fundraising efforts.
Child life doesn’t happen without donors. Their generosity allows us to provide resources to effectively serve our patients and families. These donations go a long way to give patient families a little bit of hope.
How do donations to Children’s Health support your work?
How did it feel to be honored with this national award?
or a second year, our caring partner Ace Hardware is teaming up with Children’s Health to double every unrestricted gift made online for North Texas Giving Day from Sept. 1-22, up to $150,000. These contributions help Children’s Health respond to the greatest needs of children and families across North Texas andYourbeyond.support helps us fund clinical and laboratory research that is leading to big discoveries to help children in our community. You help us enhance and expand our facilities, providing better care closer to home for families. And you help us advance an initiative to tackle the pediatric mental health epidemic from a new lens. If you make an online donation starting on Sept. 1, Ace Hardware will match your gift dollar for dollar to go twice as far.* That means you can do double the good when you support Children’s Health during North Texas Giving Day. In 2021, Ace Hardware Foundation, the charitable division of Ace Hardware corporation, celebrated its 30th anniversary and its three-decade partnership in fundraising for Children’s Miracle Network Hospitals. Local Ace Hardware Fundraising Totals $129,3272019 $149,2782020 $145,0792021
This is validation for not just what I do in child life but the role child life plays. As child life specialists, we don’t do this for recognition or an award. We do this because we’re passionate about working with patients and families and helping them through difficult times.
FDONATION!DOUBLECHILDRENS.COM/NTXGIVINGDAYYOURSEP1-22
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