St. Louis Children's Hospital Magazine: Fall 2022

Community Impact

at Work

Research & Discovery

doing what’s right for kids

Dear Friends,

I hope this latest magazine edition finds you well as we are heading into the final months of 2022. Here at the St. Louis Children’s Hospital Foundation, we have been working hard over the past several months on the building blocks to make 2023 the best year yet, while continuing to focus on the remainder of this year. That includes our annual signature gala, Play Date. The event returns to its home at The Four Seasons St. Louis and I can’t wait to see a whole room of smiling faces as we raise funds to accelerate discoveries that lead to breakthroughs in pediatric research.

St. Louis Children’s Hospital Foundation

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Copyright ©2022 StLouisChildrens.org/Giving

stays, including the Center for Families, which has seen record numbers in the past several weeks.

If you haven’t visited the hospital and seen the Center for Families, it’s one of the most special places inside the hospital. The focus has been and will continue to be, to meet families where they are in their healthcare journey. Families come in need of doing laundry, taking a hot shower, grabbing a snack or having time to decompress from the stressors of being bedside. It’s one of the places that brings our family-centered care approach to life.

The Child Life Services’ Sibling Playroom also reopened in May after being closed for more than two years because of COVID-19! This unique space is just for the siblings of patients who visit and receive care at St Louis Children’s Hospital and serves children ages 2–11. Our generous donors make such a positive impact on families, especially for those traveling from out of the area and who need to bring their other children with them to foster that sense of family.

Please understand that without donors, these family-centered spaces wouldn’t be possible. We are incredibly thankful for each of you and we look forward to continued growth and success in 2023!

We are thankful for our partnership with Washington University Physicians, especially now. Children’s hospitals around the country have seen a surge in pediatric patients due to the early arrival of respiratory virus season and St. Louis Children’s is no exception. The Foundation continues to work with our hospital partners to provide the best care for our families who are calling the hospital home during their Tanya L. Waskiewicz

Warm Regards,

Dear Friends,

Chief Development Officer, St. Louis Children’s Hospital

Tanya L. Waskiewicz

Editor: Janelle Ammel | Janelle.Ammel@bjc.org

This year marked the 11th Annual KIDstruction Week, which is an opportunity for the St. Louis regional architecture, construction and engineering industries to join together to support St. Louis Children’s Hospital. Donations support everything from community outreach programs to groundbreaking research and innovative treatments. This year’s patient ambassador, Henry, was so excited to meet workers on the job sites.

One of St. Louis Children’s Hospital’s official Heart Safe Schools completed its first cardiac emergency response drill in partnership with Washington University Division of Pediatric Cardiology fellows. This program helps schools obtain automated external defibrillators (AED) and CPR training for staff at no cost and develop Cardiac Emergency Response Plans. This project is supported by donors Pam and Ron Rubin.

St. Louis Children’s Hospital Foundation hosted the 21st Annual Joe Buck Golf Classic. This year was a record-breaker, with the event raising $647,000 for the new MRI suite at the Joe Buck Imaging Center at St. Louis Children’s. Following the day of golf, guests enjoyed dinner and a live auction hosted by Joe Buck himself. A video featuring St. Louis Children’s patient Eli showed the impact donations have on improving patient care.

Nate Bini raised $10,000 to purchase items to comfort cancer patients in honor of his brother, Chris, who is receiving treatment at Siteman Kids at St. Louis Children’s Hospital! The donation is intended to provide families with items such as nicer pillows, blankets, sleep masks and more to bring an extra level of comfort and coziness to their hospital experience. Supporters pledged donations for every home run he hit this baseball season. The family even stopped by with some treats for current patients!

Out of gratitude for the exceptional care their daughter, Laina, received at St. Louis Children’s Hospital, the Thessing family hosted an inaugural golf tournament in July. The proceeds benefit St. Louis Children’s Newborn Intensive Care Unit, where Laina was treated for 27 days.

New Research Center Aims to Improve Asthma Care for Kids

Philanthropic support will push physician-scientists to pursue more precise therapies

Asthma, a leading cause of emergency department visits at St. Louis Children’s and across the country, is a disease that causes inflammation and swelling of the airways, resulting in the narrowing of the airways that carry air from the nose and mouth to the lungs. While the donor-funded Healthy Kids Express™ – Asthma Program brings a team of asthma experts to underserved area schools to provide education and resources for children and their families, research to improve pediatric therapies and medication has been historically underfunded.

Current therapies are predominantly based on how adults with asthma are treated, which has led to a very generalized and broad approach when treating children. This means children may not be receiving the right type of care, because the research to help determine the best care solutions simply does not exist. “We have not made huge progress in asthma, and that’s not acceptable,” said Washington University physician Ron Rubenstein, MD, PhD and Chief of the Division of Allergy and Pulmonary Medicine at St. Louis Children’s Hospital.

But, thanks to two generous donors — whose dedication to child health and making strides in combating pediatric pulmonary and asthmarelated illnesses is unwavering — the new Center for Pediatric Pulmonary Diseases and Asthma is positioned to change that. As part of the Children’s Discovery Institute (CDI), a partnership between St. Louis Children’s Hospital and Washington University, physician-scientists will pursue more precise and less toxic therapies for pediatric pulmonary diseases.

The Center is led by newly appointed Center Director Michelle Gill, MD, PhD, whose vast experience and expertise are focused on asthma research. Initial areas of study will focus on children with asthma, cystic fibrosis and primary ciliary dyskinesia — all pulmonary diseases that significantly impact children.

Left: St.LouisChildren’sHospitalisproudtobringfreeasthmacaretolocalcommunitiesthanksto donorsupport.

Asthma can develop at any time in a person’s life. Infections like rhinovirus, influenza or RSV can all trigger the onset of asthma as well as food allergies and exposure to environmental factors like tobacco smoke.

Over the next two years, the Center plans to learn more about the role of allergens and viruses on immune function in children with asthma, how specific immune cells linked to asthma impact airway immune responses and the impact of targeted therapies currently being utilized on those same airway immune responses. Kids in populations with an increased risk of asthma will be a focus of studies as these high-risk populations may hold the key to underlying causes of the disease. The Center’s physician-scientists will be taking what they learn in the lab and implementing clinical studies with actual patients. The ultimate goal is to uncover potential new therapies for asthma treatment.

With the help of discoveries made through the Center and CDI, Washington University and St. Louis Children’s will transform how these disorders, especially asthma, are identified, categorized and treated. This will ensure that we are implementing the best and most personalized care possible for children visiting St. Louis Children’s Hospital.

If you would like to help fund groundbreaking pediatric research, please visit StLouisChildrens.org/Give to donate today.

Improve Pediatric Behavioral Health by Breaking Down Barriers

Setting the region up for success in battling behavioral health concerns — now and in the future

Children with unmet mental health needs have a difficult time engagingintheeducationalprocess.Thisprogramhopestokeep patientsengagedandlearning.

St. Louis — and our nation — are experiencing a rising tide of behavioral health concerns. Sadly, children are among those who suffer the most. The mental health crisis has been referred to as the new pandemic, and St. Louis Children’s Hospital is proud to have several partners that allow the hospital to be part of the solution. Thanks to generous donors, St. Louis Children’s launched one of the largest community health strategies to improve children’s behavioral health in the St. Louis region.

The new virtual school-based behavioral health services program aims to keep kids from ever reaching our doors — to keep them from experiencing severe mental health crises that require emergency care or hospitalization. It allows flexible and efficient services exactly when and how kids need them without the task of separately staffing each school. This no-cost, low-barrier access to therapy has a myriad of positive ripple effects that these children will carry with them into adulthood and to those they surround themselves with.

Top diagnoses made in St. Louis Children’s emergency department include mood disorders, suicidal ideation and self-harm. If these problems are left unaddressed, they can have a significant downstream effect on the health care system and society at large. Almost 60% of children in need of mental health care do not receive the treatment they need because of social stigma and lack of access to services.

National research has shown that for every $1 spent on early intervention, up to $10 are saved on future health care costs, criminal and juvenile justice costs, incarceration costs and low productivity.

The program included a professional team of social workers and counselors from St. Louis Children’s and professional partners at five

local schools in the St. Louis area. More than 20 administrators, school counselors, social workers and nurses worked together to ensure the community’s most at-risk children gain access to critical mental health services — all from the comfort and security of their own school.

Through six phases, students are identified and evaluated and then given a therapist to establish end goals. The hope is that students eventually achieve their goals and are discharged from therapy, but that’s not always the case. If not, students will continue to work on their goals or be referred to an outside agency for more specialized care. Regardless of the student’s path, the support they receive is invaluable.

In its first year, 29 students went through 267 virtual counseling sessions as they progressed toward their individual goals, and 100% of the students surveyed expressed a positive perspective on therapy.

These students don’t have to leave school or be placed on long wait lists to receive services, nor do they have to rely on insurance to pay for them. These are all barriers that have been eliminated and allowed students to receive the help they need.

Thanks to the following donors who have made this program possible:

Robert Imbs

Pershing Charitable Trust

William R. Orthwein, Jr. & Laura Rand Orthwein Foundation

John Allan Love Charitable Foundation

Leona Stanford Vollintine Charitable Trust

The Dana Brown Charitable Trust

Hauck Charitable Foundation

John N. & Kathleen S. MacDonough Foundation

Thanks to the generosity of St. Louis Children’s Hospital Foundation donors, the program will continue to focus on north St. Louis County schools and provide services free of charge over the next several years. If you would like to learn more about how you can support community programs, please contact Margo Newman at Margo.Newman@bjc.org.

Solving a Medical Mystery Takes Teamwork

A strong, hockey-loving kid, 9-year-old Tristan surprised his parents one evening when he told them that his left shoulder was hurting. They couldn’t pinpoint a cause and nothing was visibly swollen. After three days, the pain became so unbearable that he had to leave a birthday party early — something Tristan’s mom said triggered her intuition that something was very wrong.

Tristan went to his pediatrician, who thought he had injured a tendon in his shoulder, and was prescribed ice, massage and overthe-counter pain medicine to manage the symptoms. Unfortunately, the pain persisted. After another trip to his pediatrician, he was referred to a pediatric specialist at

GabbyandTristanmetweeklyforalmosteightmonthswhileheworkedto regainuseofhisleftarm.

A determined healthcare team found answers and healing for a young athlete

Washington University Orthopedics office at St. Louis Children’s Specialty Care Center –West County to get an x-ray, which showed nothing out of the ordinary. From there, Tristan was directed to get an MRI, which was also normal. Without a diagnosis at this point, he was told to rest.

No longer allowed to play hockey, or even skate, Tristan was still waking up in constant pain. His mom said it was like clockwork, as soon as the medicine would wear off.

While he waited for a second MRI and electromyography test to determine any possible nerve damage, he lost feeling and movement in his arm. The pain was gone, but now they were faced with a bigger issue. Tristan was scared, and so were his parents.

Thankfully the second round of testing finally confirmed the cause — which actually wasn’t an orthopedic-based injury. Instead, Tristan was diagnosed with Parsonage-Turner Syndrome (PTS), a rare neurological disorder that causes rapid onset pain in the shoulder and arm and leads to weakness of the muscles. The issue? The disease is rare and almost unheard of in children. In fact, the prognosis of those with PTS in Tristan’s age group is relatively unknown. But Tristan knew he had to fight to regain the use of his left arm.

Tristan met weekly with Gabby Herrick, PT, DPT at the Young Athlete Center, a therapy and injury prevention clinic for sport-specific rehabilitation. Located at The Specialty Care Center, the center focuses on high-level, oneon-one care. Gabby used Tristan’s love for hockey to engage him in his physical therapy sessions. She would motivate him and reward him at the end of every session by trying to shoot a hockey puck into the net — his ultimate goal was to return to playing the sport he loved so much.

Tristan’s parents credit Gabby with making that connection with their son, but also credit Tristan with his dedication to making a full recovery by doing home exercises three times each day. “He never complained,” said Tristan’s dad, Ryan. “He was dedicated and wanted to play hockey again. He knew what was going to get him there.”

TristanutilizedtheYoungAthleteCenter,wherehecombinedhisloveforhockeywithintensephysical therapysessions.

After months of reteaching his muscles to work again, Tristan now has complete use of his arm — something his parents, doctors and therapist couldn’t guarantee months earlier. After having to sit out the previous season, he cried happy tears when he was told he could participate in tryouts in August. While there is a possibility to have the PTS return, Tristan’s care team has created an immediate intervention plan to avoid the extensive damage suffered the first time. His care team is now dedicating time to sharing their experience with pediatric PTS — caused by his body’s reaction to an unknown virus — with the medical community in hopes their knowledge will help another child.

As of now, Tristan is back and better than ever. Awarded a coveted spot on his club hockey team, he is playing hard and bringing his positive attitude to the rink. His parents are on high alert for another bout of pain but are thankful to the team at St. Louis Children’s and Washington University Physicians for helping their son make a full recovery.

“He never complained. He was dedicated and wanted to play hockey again. He knew what was going to get him there.”

Ryan Pelhank

Going the Extra Mile to Do What’s Right for Kids

KIDstruction Week chair and committee go above and beyond to broaden their reach

Since 2017, Taylor Mason has served on the St. Louis Children’s Hospital Development Board. Throughout his five years on the board, Taylor has been heavily involved with KIDstruction Week, an opportunity for the St. Louis regional architecture, construction and engineering industries to join together to support programs at St. Louis Children’s. Being involved with KIDstruction Week was a natural fit for Taylor given his career in the engineering and construction world.

Born and raised in St. Louis, Taylor helps manage the day-to-day operations of David Mason + Associates, a family-run business that designs and assesses infrastructure networks and the built environment used by millions every day across many markets. As a father of two, Taylor doesn’t find it difficult to connect with the hospital’s mission to do what’s right for kids.

“It’s easy to support the mission of doing what’s right for kids because everyone can grasp and relate to it,” said Taylor. “KIDstruction Week is a rallying cry around the industry to not only do what’s right for kids, but to also stop competing with each other for a moment and come together to reach the common goal of supporting and helping kids.”

For Taylor, the 2022 KIDstruction Week chair, the biggest accomplishment of the campaign is seeing kids like Henry — this year’s KIDstruction Week patient ambassador — on the mend and truly benefitting from the world-class care at St. Louis Children’s.

As a donor and board member, Taylor believes that diversity and equity across the board is crucial.

“I try to be very thoughtful in the organizations that I support and make sure that the ones I’m supporting are diverse in what they do,” said Taylor. “It’s important to me that our board members represent the people who St. Louis Children’s serves and are actively going and reaching out to the community.”

Getting involved with the community is one of the reasons Taylor enjoys KIDstruction Week so much.

“When it comes to KIDstruction Week, we’re getting to the actual people in the industry, not just asking a company to sponsor the event as a whole,” he said. “Individuals feel personally involved, and that’s exactly what we want.”

While KIDstruction Week is heavily tied to the construction community, Taylor says that his co-chair and committee went above and beyond to also reach individuals and institutions indirectly involved with construction.

“We might be professional services firms and construction companies, but we all have third party vendors, for example,” said Taylor. “So, reaching out to other businesses that have a different hand in the construction industry is a great opportunity to get those businesses involved and allow those individuals to have a direct impact. It’s all about going one level deeper.”

Left:Taylorknowsthathecanrelyonhisconstructionandengineeringnetworktoexpand KIDstruction Week’s outreach and support.

Right:PresentingthecheckforKIDstructionWeek2021.

For more information on ways to support St. Louis Children’s Hospital Foundation, including serving on one of our boards, please email slchfoundation@bjc.org.

Making the Impossible Possible

A cabinet full of 3D heart models sits outside the office of Cardiothoracic Surgeon-in-Chief and Washington University physician Pirooz Eghtesady, MD, PhD. More than 30 hearts, all unique in their own ways and all replicas from patients at St. Louis Children’s Hospital, were printed using the latest technology thanks to the Medical 3D Printing Center, which was established in 2018 thanks to generous gifts from the Ollie Hinkle Heart Foundation and the Butler Family Foundation.

Dr. Eghtesady and the team at The Heart Center at St. Louis Children’s Hospital rely heavily on the expertise of the 3D Printing

3D technology gives St. Louis Children’s surgeons an inside look — literally

Dr.PiroozEghtesadyservesastheEmersonChairinPediatric CardiothoracicSurgeryandcontinuestomakegreatstridesonthe clinical front for his patients.

Center staff and their 3D models. “We’ve opened up a new chapter of care for these kids,” said Dr. Eghtesady. He believes that St. Louis Children’s is one of the few hospitals in the country that is capable of truly leveraging — and applying — the technology available. Today, the models created by the 3D printing team are more lifelike compared to the original 3D models that were rigid with little detail. They have a tissue-like quality, allowing surgeons to cut and sew the same way they would in the operating room.

The partnership between The Heart Center and the Medical 3-D Printing Center is giving kids options they didn’t have before. That’s extremely important because safety is at the forefront of every parent’s mind, and the 3D printer allows Dr. Eghtesady to proceed with surgery while being safe and also informed. For some of these kids with extremely complex cases, the circumstances are something he and his team see once in a lifetime. Operations like these weren’t even attempted 1015 years ago because medical teams could not have predicted the outcome. Possessing this knowledge ahead of time is not only reassuring for the parents, but it’s giving a hopeful future to kids.

Thanks to generous donor funding, Dr. Eghtesady was recently able to safely provide a one-of-a-kind surgical experience for a patient family. This particular patient’s operation was going to be incredibly complex — so much so that he could not find any record of a similar surgery being done before. “It’s hard to explain the complexity, but the best analogy is to take a basement and put it on the second floor and take the second floor and put it in the

3D models like this one have allowed St. Louis Children’s to position itself as one of the front running hospitals in the country who are using this technology.

basement,” explained Dr. Eghtesady. “It was like plastic surgery of the heart.” He shared that he could not have successfully completed that operation without the 3D team printing the model so he could meticulously plan the operation and determine the feasibility.

At hospitals that do not possess this advanced technology, a surgeon would have most likely taken a more palliative route with a routine surgery that acts as a temporary solution. The downside is that the patient, and others who face similar situations, would eventually need a heart and liver transplant. But thanks to the 3D model, this patient’s heart was successfully repaired, and the Heart Center team began the more than 12-hour surgery with preparedness that is unheard of without this type of technology.

If you would like to ensure more kids with complex heart conditions are given the opportunity to live healthier lives, please visit StLouisChildrens.org/Give to donate today.

St. Louis Children’s is one of the ONLY hospitals in the nation that hosts an adaptive triathlon to champion kids on the move. Your donations empower athletes like Lebo to swim, bike and run to the finish at St. Louis Children’s Tri My Best – creating memories that will last a lifetime. Join us in helping more kids like Lebo. StLouisChildrens.org/Give

©2022, St. Louis Children’s Hospital. All rights reserved.

Ways to Give this Holiday Season

Snowflake Village

St. Louis Children’s Hospital is grateful for the generous in-kind donations we receive throughout the year, but during the holidays these items are vital to stock Snowflake Village. This program provides the opportunity for families to “shop” for their children while in the hospital. Please visit StLouisChildrens.org/WishList to learn more about our greatest needs and restrictions to keep in mind when purchasing items. For questions, please contact us at SLCHdonations@bjc.org or 314.215.7192.

Holiday Cards

Treat your friends, family, clients and colleagues to a message of joy this year by sending a St. Louis Children’s Hospital holiday card. Please visit goodcausegreetings.com/slch.asp to order your personalized cards featuring a verse and signature of your choice. Best of all, 20% of sales will benefit St. Louis Children’s Hospital.

IRA Charitable Rollovers*

If you are 70 1/2 years old or older, you may make tax-free transfers from your IRA to a charity or charities, such as St. Louis Children’s Hospital Foundation, totaling up to $100,000 each year. This giving opportunity, known as a qualified charitable distribution (QCD), can help to fulfill all or a portion of your required minimum distribution (RMD), which begins at age 72. For more information, please contact Carri Meyer at Carri.Meyer@bjc.org or 314.286.0979.

Appreciated Securities*

If you have appreciated securities or mutual funds that you have held for more than one year, you may wish to consider giving a gift of these assets to support our work. This is one of the most popular types of assets that donors give to St. Louis Children’s Hospital Foundation. When you donate appreciated securities, you can reduce or even eliminate federal capital gains taxes on the gift. In addition, you may be entitled to a federal income tax charitable deduction based on the full fair market value of the securities at the time of the transfer. This is a great way to benefit our kids and realize additional tax benefits. Please contact Ana Pantazi at Ana.Pantazi@bjc.org or 314.286.1575 to inquire about our stock transfer instructions.

Tax Credits*

Missouri state tax credits are available for qualifying gifts to the Healthy Kids Express™ – Asthma Program. Make a gift to this vital program, receive tax credits that reduce your overall tax obligation and end up paying less out of pocket. Give more, spend less!

What gifts can qualify for tax credits? Neighborhood Assistance Program (NAP): Gifts of $1,000 or more in support of our Healthy Kids Express™ – Asthma Program from qualifying businesses.

For questions or to reserve your NAP tax credits today, please contact Lisa Williams at Lisa.Williams6@bjc.org or 314.286.0970.

*This information is provided for educational purposes only. Please consult with your legal or financial advisor when considering this gift.

This season of giving, please consider joining our mission to do what’s right for kids with a tax-deductible gift at StLouisChildrens.org/Gift, or through one of the following efforts:

St. Louis Children’s Hospital Foundation 1001 Highlands Plaza Drive West, Suite 160 St. Louis, MO 63110 314.286.0988 or 888.559.9699

StLouisChildrens.org/Giving

Make a

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Your gift of cryptocurrency enables St. Louis Children’s Hospital to deliver nationally ranked care for children and impact our patients’ childhoods in revolutionary new ways. Plus, donating cryptocurrency directly to St. Louis Children’s is more tax efficient and can save you money.

Learn more by visiting StLouisChildrens.org/GiveCrypto