September 2021 Newsletter - Children's Medical Center Foundation

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September 2021 | Newsletter

THE

HEART OF A

WARRIOR

NORTH TEXAS GIVING DAY Meet the team caring for heart transplant patient Carlos, and learn how you can support them on September 23.


We tracked down 10 team members, whose faces represent the web of support surrounding one heart transplant patient’s journey at Children’s HealthSM.

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arlier this year, Karla and her husband, Johnny, planted a peach tree in their backyard in honor of the donor family who saved their son’s life. Now growing and green, the fruitbearing tree that their 4-year-old son, Carlos, runs laps around is a daily reminder of their son’s resilience. Because since his heart transplant, Carlos hasn’t stopped running. In June, Carlos and his family celebrated the one-year anniversary of his life-saving transplant, after

he was diagnosed with restrictive cardiomyopathy in March 2020 and told he needed to be listed for a heart transplant. And for the last year, he’s been cared for by dozens of team members in the Pediatric Advanced Cardiac Care unit at Children’s Health. Because of the support of generous donors, these team members are able to provide holistic and innovative care to patients like Carlos every day. The doctors, who broke news of the diagnosis and made the joyful

call that Carlos’ new heart had arrived. The nurses, who checked his vitals and comforted Karla at night, when she cried while Carlos was asleep. And the physical therapist and child life specialist, who worked together to find ways for Carlos to play, even at his sickest. “Sometimes, I would forget that we were in the hospital waiting on a heart because everyone was so nice and caring,” Karla said. “We met so many people who are now our best friends.” These are their stories.

Team members and patient were photographed individually and placed together as a group. 1

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CAROLINE BROWN Child Life Specialist

I typically describe a child life specialist as a teacher for the hospital. We help children learn about their diagnosis and the hospital environment, as well as develop healthy coping strategies. I also provide play-based interventions to ensure kids can truly be kids, even in the hospital. For Carlos, he had never been hospitalized before, so this was a very new environment for him, but he was quickly responsive to any opportunity to play. We spent a lot of time going to the playroom and playing at the bedside. I have so many memories of us playing superheroes in the hallway. Usually, Carlos would pretend to be Spiderman, and we would shoot pretend webs at each other. Carlos and I also often did medical play to familiarize him with the hospital environment and help him understand the equipment he saw daily being used to help his body. When he got the call for his new heart, I was excited for his family, particularly his older sister, who was 9 years old at the time. Carlos was diagnosed at the peak of COVID-19 safety precautions, when siblings couldn’t visit the hospital. I had the opportunity to virtually support Carlos’ sister through that time, and I was hopeful for them to be reunited as soon as possible.

KIRSTIN BROWN

Social Worker and handler to Pet Therapy dog, Badger I’ve been the handler for one of our Pet Therapy dogs, Badger, for the last five years. He’s a fluffy, cream Goldendoodle who shares his time at work with our solid organ transplant and cardiology patients. During these long hospitalizations, patients and parents meet a lot of different team members, but Badger certainly sticks out and helps staff members build a rapport with families. Dogs give us this commonality and are a great conversation starter with families. A typical discussion may easily begin with, “Oh, you love dogs? We love dogs, too. Tell me more about your dog at home...”

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As social workers, we are often part of difficult conversations with patients and family members. But, with Badger, families are able to engage in the tactile experience of petting an animal, which we’ve found makes it easier to feel comfortable and talk about hard things. I remember Carlos was so happy and excited to meet Badger. He looked forward to Badger visiting him in his hospital room, and staff enjoyed observing these interactions, too. His mom, Karla, shared that she also loves dogs, so Badger was able to be a comfort to her as well. Our growing Pet Therapy program has been made possible because of community support and donations. Because of continued funding, Badger and his furry friends are able to provide uplifting and therapeutic intervention for our brave patients like Carlos and their family members.

MONIQUE BULETTE Physical Therapist

Before I became a physical therapist, I was working a corporate job in Seattle and wasn’t feeling fulfilled. I wasn’t able to connect with people the way I wanted to. I happened to be teaching Pilates as a hobby, and I really liked the physical aspect of connecting with my clients. I started looking into physical therapy, never imagining that I would end up working at a pediatric hospital in acute care. A lot of times, my patients are in this really vulnerable place, and sometimes it can be hard to open up and let people in during that scary moment. So, when I’m able to connect with my patients and make a difference in their lives, it feels incredibly rewarding. Many times, I’m pushing them to do things that are hard, uncomfortable, painful or scary. One of the hardest things for me was figuring out how to find that balance between empathy and not being too easy on them and pushing them so they have the best outcome.

CHILDREN’S HEALTH PERFORMED ITS 300TH HEART TRANSPLANT IN 2020.

NATHANYA BAEZ HERNANDEZ, M.D. Transplant Cardiologist at Children’s Health; Assistant Professor at UT Southwestern Medical Center

It’s amazing to see patients like Carlos and how he looks today. We come into their lives during such a scary time and go on this journey with them from a new diagnosis to the heart transplant surgery and then when they go home. Carlos was a previously healthy boy who had been having some complaints about his breathing for over a year. Doctors initially thought it was asthma, which is one of the most common diagnoses. You don’t often think about what is less common. But an echocardiogram performed as part of his initial evaluation was consistent with restrictive cardiomyopathy. I remember Karla and Johnny were so frightened and shocked with this new diagnosis and wondered what the implications would be for Carlos moving forward. After further testing, we realized that his disease was very advanced, and we moved quickly toward transplant evaluation and putting him on the list. To me, making the call to families to let them know that a heart is available continues to be one of the most rewarding moments as a transplant cardiologist. That part of the job never gets old. It’s a great joy to deliver that news to the family.

ALLISON MCGILL Social Worker

I wanted to be a social worker because I love working with people and helping them become their version of better. We took in a family member when he was young and helped raise him, and that made me interested in social services and caring for people who need help. Pediatric hospitals provide a lot of support for children, but the responsibility of social workers is to support the parents. We are an emotional support and a resource connector. We provide clinical intervention during hard moments and are the go-to people for parents for

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whatever they need. To be listed for a transplant, you go through meetings with 10 to 15 members of our team. You have to be a good candidate medically and psychosocially. I met Carlos and his family when I was evaluating him for transplant. They were quite tearful and really overwhelmed with all of the new information they were receiving. It’s an additional set of challenges when you have a then 3-year-old who was previously healthy and all of a sudden needs a heart transplant. Suddenly, these families have to become the expert on cardiac care for their children, and they do. They’re pretty phenomenal in that way.

MARY PACHECO

Registered Nurse, Night Shift I love working the night shift. I love the people and being able to connect with babies at bath time or before bed. It’s usually quieter at night, and I’m able to have conversations with families and talk to them about their day. Cardiac diseases are different from other diseases because it’s not always as evident from the outside how sick these kids are.

They don’t lose their hair. They don’t go bald. But they can be so sick. Hope is what I rely on most as a nurse. You learn to appreciate the small things like brushing your child’s hair or letting Carlos pick out his superhero pajamas before he goes to bed. But always, there is hope.

BRITTANY PHILLIPS Registered Nurse

I was Carlos’ nurse the day his family got the call that he was going to receive his heart transplant. It was a really exciting and overwhelming moment. I remember I gave his parents a big hug. They were crying, and Carlos asked them why they were sad. We had to explain to him that these were happy tears, and that he was going to get a new heart. Getting to be a part of that moment and see them receive something they had been waiting for, it was really special to witness. A lot of people don’t realize that whenever a patient or family is going through a hard or difficult moment, we might look like we’re keeping it together on the outside, but as nurses, we’re going through those moments with them.

TIMOTHY PIROLLI, M.D.

Pediatric Cardiothoracic Surgeon at Children’s Health; Faculty Associate at UT Southwestern Medical Center There’s a surreal feeling of performing a cardiac transplant and holding a motionless donor heart and then having the ability to implant it and watch it give new life to a patient. A heart transplant surgery takes a whole team of people—it is certainly not just the surgeon. And we strive for perfection every step of the way. I don’t claim to be a perfectionist in daily life, but that side of me really comes out in the operating room. I trained in cardiac surgery at Stanford University, where the technique for heart transplantation was developed in the 1960s. And now, it’s a procedure that can be done all over the world because of the work of those surgeons at Stanford. I’m proud of that lineage and connection. Certainly, the most rewarding moment of surgery is meeting the family afterward and telling them that the patient “is doing great.” You see the parents’ faces light up and relax, as they let out a sigh of relief. After all the coordination and effort that a transplant requires, those moments are the best part of my day!

SERVING CHILDREN WITH ALL OUR HEART T he Heart Center at Children’s Health continues to serve as a pioneer for innovation in pediatric cardiac care to thousands of children with congenital or acquired cardiac conditions. Despite the many challenges of 2020, last year was a milestone year for the Heart Center, which performed its 300th heart transplant and 100th ventricular assist device (VAD) surgery, and it remains the only pediatric VAD program in North Texas.

Philanthropy has supported our commitment to holistic care, and our emphasis on innovative approaches as an academic medical center to research and develop new standards of care in pursuit of clinical excellence.

2020 HIGHLIGHTS AND MILESTONES INCLUDE: • 24 heart transplants • Performed nearly 600 surgeries and conducted over 1,000 catherization diagnostic, interventional and surgical procedures • More than 100 patients served in the Fetal Heart program, an increase from 2019

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• Implemented bedside virtual assessments • Incorporated VitalSign6, a mental health screening tool for depression, anxiety and medication non-adherence • Families benefited from dedicated child life specialists, a music therapist, social workers and additional psychosocial offerings

SEPTEMBER 2021


JILL POCIUS

CASSIDY WOHLFARTH

As someone who grew up playing the guitar and piano, I like how music is transformative. I can listen to something, and it takes me to a memory, feeling or emotion. Music is a universal language. It’s very nonthreatening for kids and a way they can more easily open up and discuss how they’re feeling. It’s a brief escape from the hospital. Suddenly, they’re singing songs they love, playing and dancing. I also run our Therapeutic Arts Program, and that’s how I met Carlos. He and his dad would come almost every day to hang out and play with the drums. Carlos’ dad also plays the guitar, and I was able to loan him an instrument to take back to their hospital room. For parents who are musical, it means a lot to them when they’re able to play music directly to their child, and it makes the hospital seem more like home. That’s always our goal: How can we make your life seem as normal as possible, despite being in the hospital? His dad also is really good at playing the guitar!

As a chaplain, I often meet heart transplant patients during the transplant evaluation process. I’m part of the pretransplant assessment, and that’s my favorite time because I get a dedicated 30 minutes with families. It’s common for parents and patients to become tearful during our discussions because I create space for them to consider questions such as, “I wonder how I’m feeling about transplant? And I wonder what is most helpful when I’m scared or worried?” I remember Karla, Carlos’ mom, started to cry during our meeting, and Carlos came over to comfort her. I always find moments like that really sweet. Kids have such a capacity to know that something serious is going on. They just don’t have the language yet, and that sometimes is discounted. I’m glad that I’m a safe space for people to wonder with and to help make meaning from those big life questions like “why my heart?”.

Music Therapist

Chaplain, Spiritual Care and Education

WHEN WE GIVE TOGETHER, THE IMPOSSIBLE BECOMES POSSIBLE.

Support Children’s Health on North Texas Giving Day, and you’ll have the chance to double your gift’s impact thanks to generous matching funds from Ace Hardware.

CHILDRENS.COM/NTXGIVINGDAY

THE LEGACY CHALLENGE CAMPAIGN T he Legacy Challenge Campaign, which began Aug. 1 and runs through North Texas Giving Day on Sept. 23, is designed to inspire our donors to make estate commitments for the future, which are then matched by current gift dollars for vital Children’s Health programs. This

Document your planned gift using the Legacy Challenge Gift Confirmation Form

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program allows you to leverage your estate gifts to help future generations of children and meet our current needs at no additional cost. Fill out the Legacy Challenge Campaign Notification Form at childrens.com/LegacyMatch.

10% Legacy Challenge Match Funds are directed where you specify

Once we receive your form, a current match of 10% of the value of your future gift—up to $25,000— will be available for you to direct to your choice of mental health, research, enhancements to Children’s Medical Center Dallas, expansion of Children’s

Immediate impact to your choice of five designations

Medical Center Plano or greatest need. For more details on tax-advantaged giving opportunities at Children’s Health, contact our Director of Legacy and Gift Planning: Nicola Lawrence nicola.lawrence@childrens.com 469-744-1986

Future impact with your planned gift

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THEY’VE GOT HEART How two life-saving heart transplants united families

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arlos and Harrison don’t have a lot of common interests. One loves to roar like a dinosaur, go on explorations for insects and read National Geographic books. The other prefers to shoot his pretend web like Spiderman, kick and jump like a ninja and is bilingual, speaking Spanish and English. But the 4-year-old boys are best friends, united by matching scars down the center of their chests. Last year, both received heart transplants at Children’s Health that saved their lives. “I owe the team at Children’s Health everything. They gave me my baby back, and they treated him with so much respect and love,” Carlos’ mom, Karla, said. “And Harrison’s family is like our family now.” The families met last spring in a break room on the 8th floor at Children’s Medical Center Dallas, the flagship hospital of Children’s Health. Carlos—who was diagnosed suddenly with restrictive cardiomyopathy—had just been admitted to the hospital to wait for

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a new heart. And Harrison—who was diagnosed with dilated cardiomyopathy after his first birthday—was recovering from his heart transplant. Born 15 days apart, the boys received their transplants within two months of each other, and since then, the unique life experience has bonded the families. “We probably never would have met each other if it wasn’t for this shared experience.” said Harrison’s mom, Gabrielle. “And since meeting, we’ve been together almost every weekend. We’re lifelong friends now.”

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nitially, Karla and her husband, Johnny, thought Carlos had asthma. Maybe that’s why his stomach hurt when he walked more than a block, why he’d had difficulty breathing for a year and why his lips turned blue in the bath. But Carlos also began to dramatically lose weight. Karla and Johnny, took him to a local hospital and visited with several doctors, who eventually diagnosed Carlos with

restrictive cardiomyopathy and referred them to Children’s Health. There, they met Nathanya Baez Hernandez, M.D., Pediatric Cardiologist. She explained Carlos’ diagnosis to Karla and Johnny in Spanish, which is the couple’s first language. “I loved the fact that Dr. Hernandez spoke to me in Spanish. My English is good, but a diagnosis like that was hard for me to understand,” Karla said. “But the staff explained everything to us. They told us the truth.” “And Dr. Hernandez gave me hope.” She also told them that Carlos needed to be listed for a heart transplant. Karla and Johnny were shocked. Carlos had never had a serious medical condition. He’d never been hospitalized. And suddenly, they needed to be admitted and remain at Children’s Health while they waited for a heart, since the status of restrictive cardiomyopathy patients can suddenly change. But amidst the tears and the waiting, Karla found joy in small moments.

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A music therapist lent Johnny a guitar to Harrison to be treated at the Heart Center. play songs to Carlos in their hospital room. “We talked for four hours that night. A fluffy, Goldendoodle therapy dog It was like we’d been friends for 12 years,” named Badger came for back scratches Karla said. and to show Carlos his tricks. And the next day, Karla received the call: And Karla befriended another heart Carlos’ heart was here. patient mom, whose son also was waiting for a transplant. Together, the boys drove arlos ran through the creek, splashing battery-powered jeeps down the hospital water on his shorts and T-shirt. hallways. They played like they were On a warm June morning, a group pretend superheroes. And every week, of family and friends hiked down the they had a pizza party by the windows. shady trail at a neighborhood park to For a moment, Karla felt like she and commemorate the one-year anniversary Carlos were on a playdate at the park. of his heart transplant. “I thought I was going to be sad all Carlos’ parents and his sister, Isabella, the time, but I wasn’t. Sometimes, I even carried rocks painted by his aunt with forgot that we were waiting on a heart,” hearts and rainbows and placed the Karla said. “The team at Children’s stones in the shallow creek bed. Health was so caring, and we Karla and Johnny stood by met so many people who are the rock formation, holding now our best friends.” hands and watching their But as the days went by, son run through the creek. Karla worried that a new heart They thought about the donor wouldn’t come in time. family. And they thought about “Not everybody on the their son and where they were transplant list makes it to a year ago. Carlos with his transplant,” Dr. Hernandez “I’m happy and thankful, mom, Karla cautioned. “And there are so but I’m emotional,” Karla said, many children waiting on one heart.” wiping tears from her eyes. “A year ago, But Karla found support in an online everything was so different.” community of other heart patient families, The park is special because it is one of where she received a message from the first places the family visited last year Gabrielle, Harrison’s mom, asking if she after Carlos returned home from a threewanted to talk. month stay at Children’s Health. Harrison has been under the care “I was worried then that he wouldn’t of Children’s Health team members be able to finish the hike. That he’d be since 2018, when his parents, Gabrielle too tired and want to go home,” Karla and Bobby, relocated from their said. “But he took off running and hasn’t home in North Carolina to Dallas for stopped since.”

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e 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 face. Together, we provide extraordinary care. And as a donor, you’re a valuable part of our team. We hope you’ll join us in supporting our mission on Sept. 23 for North Texas Giving Day—an 18-hour community-wide giving day where nonprofits across North Texas raise awareness and funds for their organizations. And 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.

CHILDRENS.COM/NTXGIVINGDAY 6


MEET DR. BEN OHLSTEIN CRI’S NEWEST FACULTY MEMBER

SCIENTISTS DISCOVER “JUMPING” GENES THAT CAN PROTECT AGAINST BLOOD CANCERS

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ew research supported by Children’s Medical Center Foundation donors has uncovered a surprising role for so-called “jumping” genes that are a source of genetic mutations responsible for a number of human diseases. In the new study from Children’s Medical Center Research Institute at UT Southwestern (CRI) scientists made the unexpected discovery that these DNA sequences— also known as transposons— can protect against certain blood cancers. These findings, published in Nature Genetics, led scientists to identify a new biomarker that could help predict how patients will respond to cancer therapies and find new therapeutic targets for acute myeloid leukemia (AML)—the deadliest type of blood cancer in adults and children. Transposons are DNA sequences that can move—or jump—from one location in the genome to another when activated. Though many different classes of transposons exist, scientists in the Xu laboratory focused on a type known as long interspersed element-1 (L1) retrotransposons. L1 sequences work by copying and then pasting themselves into different locations in the genome, which often leads to mutations that can cause diseases such as cancer. Nearly half of all cancers contain mutations caused by L1 insertion into other genes, particularly lung, colorectal, and head-and-neck cancers. The incidence of L1 mutations in blood cancers such as AML is extremely

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low, but the reasons why are poorly understood. When researchers screened human AML cells to identify genes essential for cancer cell survival, they found MPP8, a known regulator of L1, to be selectively required by AML cells. Curious to understand the underlying basis of this connection, scientists in the Xu lab studied how L1 sequences were regulated in human and mouse leukemia cells. “Our initial finding was a surprise because it’s been long thought that activated transposons promote cancer development by generating genetic mutations. We found it was the opposite for blood cancers, and that decreased L1 activity was associated with worse clinical outcomes and therapy resistance in patients,” said Jian Xu, Ph.D., Associate Professor in CRI and senior author of the study. Researchers found L1 activation led to genome instability, which in turn activated a DNA damage response that triggered cell death or eliminated the cell’s ability to replicate itself. Xu believes this discovery may provide a mechanistic explanation for the unusual sensitivity of myeloid leukemia cells to DNA damageinducing therapies that are currently used to treat patients. “Our discovery that L1 activation can suppress the survival of certain blood cancers opens up the possibility of using it as a prognostic biomarker, and possibly leveraging its activity to target cancer cells without affecting normal cells,” Xu said.

CRI recently recruited Dr. Ohlstein to become the institute’s ninth faculty member and principal investigator. He earned his M.D. and Ph.D. degrees from UT Southwestern Medical Center in 2002 and completed a postdoctoral fellowship at the Carnegie Institution for Science in Baltimore, Md., in Allan C. Spradling’s laboratory in 2007. Recently, Dr. Ohlstein shared his thoughts on joining CRI and the goals he hopes to achieve through his research. WHAT ARE YOU RESEARCHING? In my lab, we use the intestinal tract of the fruit fly as a model to study the normal development of intestinal stem cells and how abnormalities in this process can lead to diseases like cancer, diabetes, inflammatory bowel disease and even premature aging. Ultimately, a better understanding of the biology of these intestines will help with the diagnosis, treatment and cures of various conditions that affect the human gastrointestinal tract. WHY DID YOU DECIDE TO JOIN THE CRI? In the past decade, it has been increasingly clear that the mechanisms uncovered in the fly gut by my lab and others are similar to those discovered by researchers studying the human intestine. The next logical next step is to replicate our work in humans. I’m counting on the highly interactive nature of CRI to help to foster collaborations between my lab and the labs of others at the institute to translate our basic research programs into clinical treatments for patients. HOW DO YOU EXPECT YOUR WORK WILL ONE DAY HELP PATIENTS? In adults, diarrhea is often seen as a mere nuisance. However, in infants and children, diarrhea is a leading cause of morbidity and mortality worldwide. Most of the genes implicated in diarrheal diseases are also present in the fruit fly suggesting that the fly could be used as a model to study diarrheal diseases. We plan to create flies that lack these genes and study the effect on the gastrointestinal tract. This approach will allow us to gain insight into disease mechanisms and rapidly identify new and better treatments for patients. WHAT LED TO YOUR CAREER IN SCIENCE? While at the University of Texas at Austin pursuing coursework for a career as a patent attorney, I found a workstudy position as a dishwasher in the lab of Dr. Dean Appling to help finance my studies. During my time there, I was given my own research project with minimal supervision by a postdoctoral fellow and for the first time became exposed to the joys of carrying out independent scientific research. HOW DO YOU SPEND YOUR TIME OUTSIDE THE LAB? I love to cook. Cooking and scientific research actually have a lot in common. Both require great ingredients, flawless technique, trial and error and good taste. And in the end, if everything is done correctly, the results are delicious.

SEPTEMBER 2021


CHANGING LIVES FOR NEIGHBORHOOD CHILDREN—ONE SALE AT A TIME How an Ace Hardware store in Coppell is supporting Children’s Health through round up

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ach Jablonowski stood behind the counter, clicking the keys of the cash register as he’s done for the last 16 years, when his parents opened the first Jabo’s Ace Hardware in Coppell. “Would you like to round up your purchase to support Children’s Health?” he asked the customer. The question is one every cashier at the family’s four hardware store locations asks after each transaction because they understand 100% of the money raised when customers round up—no more than 99 cents—goes to support local Children’s Miracle Network Hospitals® (CMN) like Children’s Health. In 2020, the Coppell store raised more than $45,000 through Round Up for Kids and other efforts to benefit Children’s Health, qualifying the hospital to receive additional grant dollars. Those funds help support the hospital’s areas of greatest need and services that rely on philanthropy like the Pet Therapy program and Child Life. “We’re a neighborhood Ace, so we need to support our neighborhood. We can’t expect the community to support us if we don’t support them,” said Zach, who oversees marketing and in-store experiences for the franchise. One of the pioneers among Ace store leaders to begin using round up, Zach often preaches about the benefits of it as a fundraising tool to raise money for pediatric hospitals. More than 50% of customers at the family-owned business opt to round up their purchase. “It’s just pennies, and that is making a huge impact,” Zach said. “We know the

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kids who live in Coppell get treated at Children’s Health. We see them and hear their stories. This is as local as it gets.” Zach was 14 years old when his parents quit their jobs and cashed out their 401(k)s to purchase the Coppell store. His dad, Bill, started working at an Ace Hardware Store when he was in high school and worked for Ace Hardware Corporation after he graduated college, so he had a model of what it took to run a successful business. Zach’s mom, Renae, ran the store alongside her husband, overseeing creation of The Cove Gifts—a gift store brand that also gives a portion of sales back to Children’s Miracle Network. At the Coppell store, Zach’s first job was taking out the trash, but he quickly climbed the ladder to head cashier at 15 years old and helped train new employees. The family now counts four Ace Hardware locations, and in September, they will open their fifth and largest store in Rowlett—which will include an indoor kitchen, cooking classes, design consultations and high-end clothing lines. Last year, Zach was awarded the 2020 Ace All-Star Retailer award from the Ace Hardware Foundation, the charitable division of Ace Hardware Corporation, for his innovative approach to fundraising efforts like Round Up for Kids and other campaigns to support CMN. But he said it’s a team award that recognizes the part everyone plays in impacting their community. “Our family has been impacted by CMN Hospitals, and it’s hard to find a family that hasn’t,” Zach said. “Where else are you going to put your money?”

DOUBLE YOUR DONATION! SEPT. 1-23

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his 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. 1-23, up to $150,000. These contributions help Children’s Health respond to the greatest needs of children and families across North Texas and beyond. If you make an online donation starting on Sept. 1, they’ll 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. This year, Ace Hardware Foundation, the charitable division of Ace Hardware Corporation, is celebrating its 30th anniversary and its three-decade partnership in fundraising for Children’s Miracle Network Hospitals (CMN). In 2020, Ace Hardware stores raised a record-breaking $17.9 million for CMN Hospitals. And this year, Ace Hardware surpassed $1 million in lifetime giving throughout its partnership with Children’s Health. These donations come from support of local Ace Hardware retailers and the local Ace Retail Support Center in Wilmer, Texas.

Local Ace Hardware Fundraising Totals 2018

2019

2020

$130,342

$129,327

$149,278

CHILDRENS.COM/NTXGIVINGDAY *Using matching funds provided through prior fundraising efforts. 8


SICKLE CELL DISEASE DOESN’T KEEP REAGAN OFF THE FIELD

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eagan sat in the dugout saying a prayer. It was the bottom of the final inning in his baseball team’s championship game against their archrival. The score was tied. There were two outs, and the winning run was on third base. Then-9-year-old Reagan was the next up to bat. “You want to be a hero?” his coach asked him. Standing against the fence, his mom, Jaimee, closed her eyes, unable to watch. She knew her son ran slower than the other boys because lifelong pain in his body had weakened his legs. Instead, she listened, holding her breath until she heard the crack of the bat, gasps from the crowd and an eruption of cheers as Reagan stepped safely onto first base and his teammate crossed home plate.

How a collaboration between Children’s Health and UTSW is paving the way to cure genetic disorders like sickle cell anemia

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hildren’s Health and UT Southwestern Medical Center recently formed the Cellular and ImmunoTherapeutics Program (CITP)—an innovative clinical and research program within the field of pediatric oncology and hematology that will continue advancing us as a worldclass leader in the fields of cellular and immunotherapy for children. The program enables Children’s Health to continue delivering cutting-edge cellular therapies and aims to become a leader in the rapidly growing field of gene therapy, giving us the potential to cure genetic disorders such as sickle cell anemia. The program also promotes and integrates basic and translational research efforts, with the goal of cultivating and nurturing “homegrown” innovative therapeutic approaches. Nationally, tens of thousands of children are diagnosed with cancer or

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blood disorders each year. Many of these conditions—including sickle cell anemia, leukemia and lymphoma, among others— would potentially benefit from the research and innovative approaches implemented by the CITP team. Together, Children’s Health and UT Southwestern are uniquely positioned to advance the field of pediatric oncology and hematology because of the available clinical and academic expertise already in place and because of the large and diverse population in North Texas. This lends to more robust studies and the ability to understand therapeutic impact on patient sub-populations. The implementation of CITP not only distinguishes the Pauline Allen Gill Center for Cancer and Blood Disorders program at Children’s Health from all others in North Texas but also across the country, allowing

us to grow our clinical operations and innovative research efforts in North Texas. But philanthropic investment support in the program is crucial so the CITP team can continue exploring promising new avenues for innovative therapeutic approaches and a greater understanding of pediatric cancer and blood disorders.

SEPTEMBER 2021


Diagnosed with sickle cell disease as a and for most of their lives, there have newborn, Reagan, now 14, has learned to not been effective treatment options to live life in pain. offer because of a lack of available FDAHis younger brother, Leo, also was approved therapies. diagnosed with the genetic disease at birth. Even today, there are only a few options The boys were referred to the Pauline available and curative treatments are still Allen Gill Center for being actively researched. Cancer and Blood But even though the Disorders at Children’s disease is invisible, the Health, where a team pain is real. of specialists began “It’s nice to have working with them Children’s Health as a to identify the best place where the boys approach to managing know they’re going to their disease. be taken seriously— Sickle cell, which has because being believed no cure, causes red blood is such a question mark cells to become rigid and for people living with REAGAN’S MOM, JAIMEE contort into a crescent sickle cell disease,” moon shape. The disease Jaimee said. can manifest through For Reagan, repeated repeated infections and varying degrees pain has weakened muscles in his right of episodes of pain when the inflexible red arm—the arm he uses to throw a baseball— blood cells get caught in the body’s tiny and his left leg. He also has seen a blood vessels. psychologist at Children’s Health to learn Reagan and Leo do not have the most mental tactics to help cope with the pain. common variant of sickle cell disease, Jaimee and her husband encourage the

To have so many people come together to support his efforts has been amazing to see.

boys to live life as if they don’t have the disease—“life without limits” is their motto.

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eagan knows that his sickle cell disease doesn’t define him, but recently he’s become an ambassador for the disease to his peers. “I don’t mind when my friends ask me about it,” he said. “I think it’s important to help others learn about sickle cell disease.” In June, Reagan combined his love of baseball and his desire to increase awareness of sickle cell at a baseball tournament that was held on World Sickle Cell Day. He worked with a uniform company to design special uniforms in honor of sickle cell awareness—from the hats all the way down to the socks. He also worked with the tournament director to sponsor a blood drive and Be The Match registry drive at the tournament. “To have so many people come together to support his efforts has been amazing to see,” Jaimee said. “I’m proud of how Reagan is finding his voice and raising support for sickle cell disease.”

Compassion is in our blood

T

he Pauline Allen Gill Center for Cancer and Blood Disorders is a leader in patient care, treatment, research and training in pediatric oncology and hematology, providing hope and healing to children and families from across North Texas and beyond. Generous donors support clinical and research excellence, along with incredible psychosocial support for our patients through child life, social work, spiritual care, language interpretation and more.

You also will play an important role as we expand services on our Plano campus to better serve families in our northern communities closer to home. 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.

The Gill Center by the numbers in 2020 865 new patients 276 children with cancer sickle cell patients— 88 new the most in one year visits at 21,000+ outpatient Dallas and Plano CHILDREN’S MEDICAL CENTER FOUNDATION

1,000+ telehealth visits cell 33 stem transplants pediatric 800+ cancer survivors received care in the After Cancer Experience (ACE) Program

active clinical research 200 trials that helped improve the understanding,

prevention, diagnosis, or treatment of childhood diseases recruiting 2theNDworld LARGEST site in for CAR-T, a form of cell

therapy that trains the immune system to recognize cancerous cells

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Children’s Health President and CEO Christopher J. Durovich

Communications Specialist Greer Johnson

Children’s Medical Center Foundation President Brent E. Christopher

Contributors Robbie Aaron Marvis Browder Jessi Cole Colten Hendrik Nicola Lawrence Aracely Munoz Katie Regan Ilyssa Schlereth Angelica Timpany

Chief Advancement Officer Laran O’Neill Content Manager Nanette Light Digital Content Specialist Jason Brynsvold

Design Eric Rob & Isaac Photography Juan Pulido Lori Wilson


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