Promising News - Spring 2019

C H I L D R E N ' S M E D I C A L C E N T E R F O U N DAT I O N

PROM IS I NG

NEWS FEBRUARY 2019

Children’s Health Launches $56 Million Emergency Room Renovation Project Daniel Krauland recently walked through a construction space that was little more than a concrete shell. When he explained what was in the works, it quickly became apparent that this would become some of the most important workspace in North Texas.

“It’s planned down to the last detail with input from medical staff at every step.” >> D a n i e l K r a u l a n d , S r. P r o j e c t M a n a g e r <<

Mr. Krauland is a Senior Project Manager at Children’s HealthSM and oversees the construction expansions to the Emergency Room at Children’s Medical Center Dallas.

Lives will be saved here, and he talked in detail about how every inch of space will be used for patient and family needs.

“This is brand new space the Emergency Room has never had before,” Mr. Krauland said standing near the future waiting room that will accommodate up to 100 people.

When complete, total square footage will stretch to more than an acre of life-saving space. Triage rooms will double from three to six, trauma rooms from two to four. Unlike the existing space for treatment, these will be rooms – not bays – giving patients and families complete privacy. New, private rooms will be created for dental patients, asthma patients and for victims of sexual assault and abuse.

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BY THE NUMBERS: CHILDREN'S MEDICAL CENTER DALLAS ER

122,000

AVERAGE YEARLY VISITS

2ND

BUSIEST PEDIATRIC ER in the nation

INSIDE:

4 HUNTER'S STORY

6 METABOLIC DISEASES

ONLY

24/7

PEDIATRIC LEVEL I EMERGENCY SERVICES TRAUMA CENTER in North Texas

8 LEADERSHIP AWARD

10 RED BALLOON RUN & RIDE 1

“It’s planned down to the last detail with input from medical staff at every step,” Mr. Krauland said.

In a sign of the community’s confidence in Children’s, donors have already contributed more than $15 million to the $30 million philanthropic goal. In total, the expansion and renovation project will be $56 million.

Fundraising co-chairs, Katy and Kyle Miller along with Diane and John Scovell, are leading the charge in the community to reach this goal.

As the only pediatric Level I Trauma Center in North Texas, the Children’s Emergency Room expansion is the most important construction

$15 MILLION RAISED OF

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$30 MILLION fundraising goal

project in the area; it is the front-line of our responsibility to care for children. The Emergency Room at Children’s Medical Center Dallas treats approximately 122,000 children a year, making it the second busiest pediatric ER in the nation. It averages 400 children a day in the winter, at its busiest.

“As one of the largest and most complex pediatric hospitals in the nation, we are fully modernizing and renovating our emergency room at our flagship hospital to meet the needs of our growing patient population,” said David Berry, President of System Clinical and Scientific Operations at Children’s Health.

“We receive and treat a large portion of

THROUGH THE YEARS:

1991 The Charles E. and Sarah M. Seay Emergency Referral Center opens at Children’s Medical Center Dallas.

At the time of opening, it was the only pediatric ER in the area.

2005 Children’s Medical Center becomes the only pediatric hospital in Texas to be recognized for the highest level of emergency care, achieving Level I Trauma Center designation.

It remains the only pediatric Level I Trauma Center in North Texas.

To learn more about the ER renovation project or join fundraising efforts, visit give.childrens.com/newER.

children within the community, and believe this renovation will enable us to better serve families across the Dallas-Fort Worth metroplex and North Texas.”

With completion scheduled for 2021, the construction will be carried out in three phases to ensure emergency services continue uninterrupted. When the medical staff moves into the new Charles E. and Sarah M. Seay Emergency Center at street level, the first floor will undergo a complete renovation.

Based on the suggestions of patient families, the interior of the emergency room on both floors will be redesigned with landscapes of the ocean, jungle and mountains.

“The Emergency Room is often the ‘front door’ to our health system,” said Matt Davis, Executive Vice President, Dallas Market at Children’s Health. “Every decision for this renovation was carefully analyzed to keep the preferences of our patients and their families in mind while providing them with comfort and the most efficient, high quality care.”

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Hunter’s Story Expert Care When Every Second Counts After receiving an urgent call from her 1-year-old-son’s daycare, Erin knew immediately that he was having an anaphylactic reaction.

Allergic to eggs, her son Hunter accidentally ate part of another student’s French toast. The results were dramatic.

Erin rushed to her son and found him lethargic. His stomach, back, legs and arms were bright red. His hands and feet were cold and turning blue.

It was a terrifying situation, but when the ambulance arrived, Erin did not hesitate when asked to which hospital she wanted her son to go. She told the paramedics to go to the Emergency Room (ER) at

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Children’s Medical Center Dallas, the flagship hospital of Children’s HealthSM. “I knew there would be pediatric specialists who had seen something like this before and would know exactly what to do,” she said. “I wouldn’t have had that same confidence if we were going to another facility.”

When they arrived at the ER, the medical staff immediately gave her some sense of assurance by calling her “Mom.” “All I could do was trust that they were going to handle it and that he was in the best hands possible,” Erin said.

She turned out to be right.

The ER treated Hunter with steroids and antihistamines, monitoring him as the reaction subsided and the danger passed.

Erin’s husband, Adam, was coming out of meetings at work when he was surprised by urgent text messages telling him his son was in the ER. He rushed to Children’s Medical Center Dallas.

"When something happens to your child, you want the very best for them.” >> H u n t e r ' s d a d , A d a m <<

His worry was also quickly replaced by a sense of relief when he saw how the team was handling the situation.

“ERs are never calm places, but here the medical staff was calm,” Adam said. “They were very clear about what was happening to Hunter and what they were doing to treat it.

They definitely calmed me.”

The reassurance Erin and Adam felt and the quick, effective care their son received is what Children’s Medical Center Dallas will be bolstering in a three-phase ER renovation. The project is scheduled to be complete in 2021.

“We would definitely recommend Children’s Health, and especially the ER, for an emergency. From start to finish, the staff was very clear and methodical on what they were doing and why they were doing it,” Adam said. “Every time we had a question, they were happy to answer it. When something happens to your child, you want the very best for them.”

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Closing the Gap

Scientists Seek to Expand Diagnostic Testing for Metabolic Diseases in Babies

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In Texas, newborn babies are routinely screened for over 30 diseases shortly after birth. Many of these are genetically-determined metabolic diseases that can be treated with medications or dietary modifications that allow these children to live happy and healthy lives. However, hundreds of other metabolic diseases still can result in severe disability

and death because it is currently impossible to diagnose and treat them effectively.

Many other lethal metabolic diseases have not even been discovered yet. Scientists at Childrenâ&#x20AC;&#x2122;s Medical Center Research Institute at UT Southwestern (CRI) are working to close these gaps through the Genetic and Metabolic Disease Program (GMDP).

Together with physicians, genetic counselors and other medical professionals from UT Southwestern and Children’s Medical Center Dallas, scientists at CRI are working to discover new disease-associated genes in children and study the metabolic changes that result from these mutations. Researchers

“Seeing patients in the clinic keeps our research in the lab focused and makes sure we are asking the right question,” >> D r. R a l p h D e B e r a r d i n i s <<

hope to identify new treatments and better diagnostic tests to improve the ability to identify and monitor these diseases in the clinic. The program, founded in 2013, is unique

Known Disease

New Disease

Child/Family Evaluated in CMC Clinic

Conventional Diagnostics/Management

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Recruitment to Program/Search for Disease Gene TACAG TACAG TACAG TACAG TACAG TACAG ATGTC ATGTC ATGTC ATGTC ATGTC ATGTC T A C A GT A C A G T A C A G T A C A GT A C A G T A C A G ATGTCATGTC ATGTC ATGTCATGTC ATGTC ATGTC ATGTCATGTC

ATGTC ATGTCATGTC

TACAG TACAG TACAG TACAG TACAG TACAG

in how it integrates patient care and research to help diagnose and treat children.

“Seeing patients in the clinic keeps our research in the lab focused and makes sure we are asking the right question,” said Ralph DeBerardinis, M.D., Ph.D., who conducts research at CRI and directs both the GMDP and the clinical Division of Pediatric Genetics and Metabolism at UT Southwestern and physician at Children's Health. “Our scientists and doctors work side by side to evaluate patients, learn about their diseases and think creatively about finding better treatments.

This leads to a virtuous cycle where the patients help direct our research and the discoveries we make in the laboratory shape our clinical work. In the past five years the GMDP has identified new disease genes, provided accurate diagnostic information to families, and in a few cases helped patients find better treatments tailored to their mutations.”

To date, the GMDP has recruited more than 400 children for studies and has extended its reach to patients in several countries.

“We hope that ten years from now, screening newborn babies for metabolic diseases will look very different because we will have identified new diseases and new treatments.

I am proud of what we have accomplished so far, but I am really excited about what we are going to see next,” said Dr. DeBerardinis.

+

TACAG TACAG TACAG TACAG TACAG TACAG ATGTC ATGTC ATGTC ATGTC ATGTC ATGTC

Exome/Genome Sequencing

Targeted Mutation Analysis Diagnostic Metabolite Levels Genetic Counseling Presumptive Therapy (Standard of Care)

Global Metabolite Profiling

TACAG ATGTC

Proprietary Bioinformatics Tools Used to Identify Potential Genes Responsible for Disease

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Testing of Potential Genes in Patient-Derived Cells

Identification of New Disease-Causing Gene

3 Development of Novel Therapeutics

Right: Treatment pathway of patients seen by CRI’s Genetic and Metabolic Disease Program

Disease Modeling in Cells and Mice

Individualized Therapy

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COMING FULL CIRCLE

Foundation Employee Receives Leadership Award for Commitment to Service The passionate leadership of Aracely Muñoz, Manager of Corporate Engagement at Children's Medical Center Foundation, is being recognized in the community. She recently earned the La Cima Latina Leadership Award in the nonprofit category by the Greater Dallas Hispanic Chamber of Commerce. The La Cima annual luncheon recognizes Latinas who have made significant and positive contributions to the community, while establishing themselves as leaders advocating for Hispanics across the Metroplex.

“It was a tremendous honor to receive this award, and my work here was a huge part of making this happen,” Aracely said. “My work at Children’s feels much more like an opportunity to give back than a job.

The hospital saves children’s lives and any opportunity to advance that is an honor. This award is a beautiful capstone.”

Aracely is known in the community for her selfless service and volunteer work with Hispanic children who want to attend college by providing college readiness planning for students and their families. As a board member of the Bobby Bragan Youth Foundation (BBYF), Aracely meets with children and shares her story in hopes of inspiring them to pursue a college degree.

She has personal experience with the Bobby Bragan Youth Foundation, having been awarded one of their scholarships in 1997, and she is the first scholarship winner to serve on the organization’s board.

The proud daughter of hard-working, firstgeneration Mexican immigrants, Aracely dreamed of going to college, regardless of her family's severe financial struggles. Her family didn't have a car and relied on church food pantries for meals and relatives' hospitality to avoid staying at homeless shelters.

Despite these hardships, Aracely never stopped dreaming and worked hard to attend Brown University in Rhode Island to earn her Bachelor of Arts in Latin American studies. She also holds a master's degree in global leadership from Dallas Baptist University and is currently working on completing her Master of Business Administration from the University of Massachusetts Amherst.

At Children's Medical Center Foundation, Aracely leads the corporate fundraising efforts for more than 50 corporate partner brands in Dallas, Plano and surrounding areas, raising more than 3.3 million dollars annually.

Aracely also leads the multicultural efforts for the Foundation, which include collaborating with Hispanic/Latino leaders and influencers

“My work at Children’s feels much more like an opportunity to give back than a job.” >> A r a c e l y M u ñ o z <<

through engagement, cause-marketing and B2B initiatives, as well as helping to develop the first-ever Latino Advisory Council to launch in 2019.

“My hope is that these kids see someone that comes from a family like theirs, who has attained the dream their parents only hoped they could achieve,” says Aracely.

“It is not easy, and it does not come without perseverance and going through adversity.

But with hard work, we can continue to help others along the way, give them a hand up and provide them with the guidance so they too can be successful.”

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TEAM PKU

Finding Community at Red Balloon Run & Ride

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Sara Pearson, Dallas mother of three, leads a team that has participated in every Red Balloon Run & Ride since the fundraising event began in 2009. The money raised by her team goes to help children, like her daughter, Katherine, who have phenylketonuria.

A blood test revealed Katherine had the rare disorder, better known as PKU, less than a week after she was born in 2005. Sara and her husband had never heard of the inherited disorder which robs the digestive system of its ability to break down certain amino acids.

“We were very nervous, we were very scared. We were first time parents with a 1 week old,” she said, recalling that her pediatrician sent the family to Children’s HealthSM. “They eased our fears, but it was overwhelming at first.”

Children’s staff explained that her daughter’s life-long dietary restrictions would have almost no wiggle room, but these hurdles could be overcome with a parental vigilance that would eventually become second nature.

“Children’s has been very good to us,” Sara said, explaining that weekly blood tests at the hospital eventually turned into monthly blood tests at home. “Katherine took on her restricted diet with ease because she never knew anything different,” her mother said.

Children’s offered even more support with the annual summer camp for PKU patients and their parents. It’s a place where Katherine, now a 10-year-old fifth grader, can bond with other kids who also have PKU. “She really treasures these friendships because those kids understand the type of

“The Red Balloon Run & Ride has such an uplifting sense of community. People there have been touched by Children’s in so many ways." >> S a r a P e a r s o n <<

diet she is dealing with,” Sara said.

Team PKU has raised $82,450 through Red Balloon Run & Ride for the PKU camp.

Katherine and her two younger brothers enjoy the big send off at the race’s start, the kid-friendly activities near the starting line and the chance to bond with other families who have been helped by Children’s.

“The Red Balloon Run & Ride has such an uplifting sense of community. People there have been touched by Children’s in so many ways.

It’s such an encouraging environment,” Sara said. “After the finish line there’s a huge, carnival-like setting with games and food. It’s really fun for the kids.”

From a kid’s perspective, Katherine also gave the event a strong endorsement.

“I enjoy the Red Balloon Run because everyone comes to support me and other kids treated at Children’s Health. It makes me feel really special,” she said. “I also like it because it has a lot of fun games, so if you don’t want to run there are other things to do.”

The Run & Ride consists of several events from a 1K fun run to a 72-mile bike ride.

Participants can walk instead of run, and young children, including those in strollers, can participate.

This year’s Run & Ride takes place at Children's Medical Center Plano on May 11.

Opportunities to support Team PKU or form a new team for this year’s Run & Ride can be found on Childrens.com/runandride.

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Please note our new suite.

Childrenâ&#x20AC;&#x2122;s Medical Center Foundation in the Southwestern Medical District 2777 Stemmons Freeway | Suite 1700 Dallas, Texas 75207 give.childrens.com

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