Foundation Newsletter Fall 2023

Nationwide Children’s Hospital

Foundation

A Letter from the Foundation

We think you are really going to enjoy this issue of the Foundation Newsletter. There are a number of breakthroughs to celebrate. Philanthropy enables Nationwide Children’s Hospital to generate new treatments for disease, to break stigmas for mental health concerns, and to provide best-in-class care for children.

Steve Testa President, Nationwide Children’s Hospital Foundation

First, we announced that the Food & Drug Administration approved the first ever gene therapy treatment for Duchenne Muscular Dystrophy (DMD). Jerry Mendell, MD, in the Center for Gene Therapy at the Abigail Wexner Research Institute, saw his first patient with Duchenne Muscular Dystrophy 50 years ago. “This is what I’ve devoted my life to,” Dr. Mendell says.

Secondly, your support of our hospital has helped us continue to break stigmas and address decades of silence about pediatric mental health. October 10 is World Mental Health Day, an important reminder on the calendar to honor, celebrate, and support the 1 in 5 children who live with an impairing mental health condition.

Thirdly, we take a look into the recent Nationwide Children’s expansion into the Toledo area. Just over one year ago, our signs went up in a partnership with Mercy Health – Children’s Hospital to advance physician recruitment, enhance continuing medical education, and improve care coordination and treatment for families in northwest Ohio and southeast Michigan.

And, of course, there is much more. I am grateful for all your support and advocacy. For more than 130 years, philanthropy has made our mission possible. Thank you for your generosity.

Steve Testa

Celebrating an Incredible Milestone

On June 22, 2023, in an announcement that resonated across the globe, the U.S. Food and Drug Administration approved the first-ever gene therapy for Duchenne Muscular Dystrophy (DMD).

It was an extraordinary announcement for children ages 4-5 years who live with DMD, as well as an extraordinary achievement for Nationwide Children’s Hospital and for Dr. Jerry Mendell. Over the course of his storied five-decade career as a neurologist and researcher, Dr. Mendell has been devoted to discovering new treatments for children with neuromuscular diseases. He has often said his passion was sparked when he saw his first patient with DMD more than 50 years ago. STAT News called Dr. Mendell “the most famous Duchenne doctor on the planet.”

It is remarkable for any hospital to have developed an FDA-approved gene therapy, let alone a pediatric hospital. And Nationwide Children’s has now developed two of them.

Dr. Mendell and his colleagues pioneered the first approved gene therapy developed at Nationwide Children’s – Zolgensma,

for children with Spinal Muscular Atrophy (SMA), which was called the most important scientific breakthrough of 2017 by the readers of Science magazine.

Now, he and his colleagues have pioneered a second FDA-approved gene therapy. The DMD gene therapy was invented in the Abigail Wexner Research Institute’s Center for Gene Therapy by Dr. Mendell and Dr. Louise Rodino-Klapac. Dr. Rodino-Klapac is now the chief scientific officer at Sarepta Therapeutics, which has licensed the therapy, called ELEVIDYS.

In addition, dozens of Nationwide Children's scientific, administrative, and clinical staff have supported the development and testing of this new treatment over many years. Dr. Kevin Flanigan, director of the center, has been a champion for these breakthroughs.

There is still research we are awaiting to learn the full effects of the gene therapy on children who have DMD. For now, though, we are celebrating this incredible milestone.

DMD is a severe form of muscular dystrophy, typically affecting boys and progressing over time to impact walking, breathing and heart function, resulting in early death. It’s caused by a mutation in a specific gene, and the newly approved therapy delivers a new, functional gene to overcome the effects of the disease.

Transforming the Diagnosis & Treatment of Children with Cancer

Nationwide Children's Hospital works with The National Cancer Institute (NCI)and Children’s Oncology Group (COG) to change the direction of pediatric cancer diagnosis and care.

New results from international efforts to characterize pediatric cancers have led to the development of a project that analyzes molecular data to help clinicians determine the best treatment for each child, faster. This project is known as the Childhood Cancer Data Initiative (CCDI) Molecular Characterization Initiative (MCI).

The Abigail Wexner Research Institute at Nationwide Children’s contributes two vital parts of this initiative:

1. The Biopathology Center at Nationwide Children’s houses the Biospecimen Core Resource Center, the repository for the National Cancer Institute’s Center for Cancer Genomics since 2009.

This repository stores pediatric cancer samples from children all over the world. These samples serve as a library for researchers and clinicians everywhere. The data available here has contributed to hundreds of published studies, including a series of breakthrough reports on common cancers that were the focus of the national Cancer Genome Atlas Project.

2. At the Steve and Cindy Rasmussen Institute for Genomic Medicine (IGM), genomics staff can use DNA and RNA to diagnose and provide actionable information to clinicians in just 21 days.

“With these results impacting patient care, time is of the essence,” explains Nilsa Ramirez, MD, director of the Biopathology Center at the Abigail Wexner Research Institute. “We complete the process from receipt of the specimens at our center through final analysis in the IGM within 21 days, which is an exceptional turnaround time for this process. We’re proud to be an essential part of this pioneering initiative.”

The largest initiative of its kind in the United States, MCI enrolled their first patient March 31, 2022. Since then:

1,236 Patients have provided samples

47

120

Samples have been received from 47 STATES and 120 INTERNATIONAL patients

1,137

Samples were of sufficient quality and quantity for molecular analysis

166 of 226 Children's Oncology Group affiliates have enrolled patients

Speedy Bears Race into Patients' Arms

Birdies for Babies

The staff at Nationwide Children's - Toledo was excited to recognize the Bingley Family for their incredible support. Since 2013, the Bingleys have hosted the Birdies for Babies golf outing in memory of their son, Cameron, who passed away in the neonatal intensive

Inspired by the care Cameron and family received during their time in the NICU, the Bingleys host Birdies for Babies annually to support the NICU at Nationwide Children's - Toledo. In August, Birdies for Babies raised $16,000, the most successful year ever. The event has now raised $107,300!

We are grateful to the Bingleys and event participants for sharing their celebration of Cameron with other patients and families of Nationwide Children's - Toledo.

Patients and staff were excited to become part of the Speedy Bear Brigade in September! Thanks to The NASCAR Foundation and

Dana Open

Nationwide Children's - Toledo was proud to be one of the 16 children's charity beneficiaries of the LPGA Dana Open this year. One of the longest-running events on the LPGA Tour, The Dana Open has contributed $13.7 million to support the mission of more than 215 children's charities since 1984. Congratulations to Linn Grant, this year's champion and many thanks to Dana, LPGA Tour, and tournament volunteers for making this possible.

On Our Sleeves For Children's Mental Health

The On Our Sleeves Movement For Children's Mental Health envisions a world where mental health is a part of the upbringing of every child. That's why we are on a mission to give free expert-created resources to all U.S. Communities so everyone can understand and promote mental health for children.

VISIT ONOURSLEEVES.ORG TO FIND:

Mental Health Resources for Your Child Resources in your area, state, and nationally

Mental Wellness Tools and Guides

How-To Guides designed to provide education and action-oriented strategies

Ways to Take Action Help break the stigma surrounding mental health and give kids a voice

Become a Partner Alliance Partners amplify the cause of children's mental health through voice and action

Dave & Jimmy’s Celebrity Softball Classic raised more than $50,000 to support On Our Sleeves

WNCI’s Dave & Jimmy, Twenty One Pilots, The Band Camino, Benson Boone, members of the Columbus Blue Jackets, some Buckeye athletes, TV celebs, and more gathered for a night of fun benefiting the mission of On Our Sleeves on July 22 at Huntingon Park. Thanks to Ohio Education Association, the first 300 attendees received a free t-shirt and spectators were treated to post-game fireworks sponsored by Franklin County Veterans Service Commission.

DAVE & JIMMY'S CELEBRITY SOFTBALL CLASSIC RAISED MORE THAN $50,000!

It’s All of Us

Aman stands in front of a group of people and asks, “Who here has mental health?” Only a handful raise their hands.

“We all have mental health,” he says.

More than 1 in 5 adults have experienced a mental disorder within the past year. And 1 in 5 children will have a mental health disorder in their lifetime. Half of those will not get treatment. The disconnect between prevalence and treatment is complicated, but one contributing factor is stigma.

Stigma is ‘a set of negative and often unfair beliefs that a society or group of people have about something.’ Fear of judgment, rejection or misunderstanding from others can contribute to people not seeking help for mental health conditions. Those suffering may even hold false beliefs of their own about mental health disorders or think that they should use willpower to ‘get over it.’ This is similar to expecting a broken bone will spontaneously mend itself if we just want it bad enough.

What can we do to help break stigma?

In our everyday lives, we can use non-stigmatizing language. We can see people first and disorders second. For example, instead of saying:

“She’s depressed” say, “She has depression.”

“He’s bipolar” say, “He has bipolar disorder.”

Casually throwing around terms such as “crazy,” “nuts,” “not normal,” “psycho,” or “schizo,” can cause harm to those who may personally be suffering in silence or have a friend or family member doing the same. While terms such as these can shut down a conversation and leave people fearing judgment, using language such as, “He has a mental health disorder” (if this is known) conveys acceptance.

Additionally, it is important to avoid playing amateur detective and speculating about whether someone has a mental health disorder and what their diagnosis might be. For example, don’t say, “That kid must have ADHD” when observing a child excitedly running around. Our mental health is complex and operates on a continuum of typical thoughts, feelings, and behaviors. A qualified professional can determine the presence or absence of a disorder after a thorough assessment.

Whether or not we are personally affected by a mental health disorder, we can be champions and advocates for better understanding of people who have them by challenging harmful language and beliefs when we hear them.

After all, it’s not them and us. It’s all of us.

IN RECOGNITION OF WORLD MENTAL HEALTH DAY ON OCTOBER 10, CONSIDER:

• Take action for children's mental health by visiting onoursleeves.org. Help break stigmas and give kids a voice.

• Practicing Mental Fitness:

o Remind yourself of 3 things you are grateful for

o Take a walk

o Smile and say hello to each person you see

o Practice deep breathing for 5 breaths

o Give yourself the gift of an extra 30 minutes of sleep

o Send a message to someone you miss

Opportunities for Grateful Families to Become Involved

We are constantly inspired by the ways the Nationwide Children's Hospital community wants to give back, whether it be by making a gift, hosting an event, volunteering your time, or sharing your story. As part of the Nationwide Children's Hospital Family, you know the importance of making a real difference. Start making an impact - connect with us today.

MAKE A DONATION

Thank your doctor or nurse by donating in their honor.

NationwideChildrens.org/HonorCaregiver

CREATE YOUR OWN EVENT SHARE

Show your support by creating a Help Kids Everywhere DIY Event. Host a lemonade stand, a 5k, or create your own one-of-a-kind event.

NationwideChildrens.org/HKE

If you have questions or would like more information, contact:

10 | NCH FOUNDATION Newsletter 2023

VOLUNTEER

A

Give the gift of time by volunteering at special events, at the hospital, or as a social advocate.

Jillean Bastian Senior Director, Ambassador Program, Nationwide Children's Foundation

HOLIDAY TOY DROP

Drop off Dates:

Friday, December 8 | Saturday, December 9

9 a.m. – 1 p.m. | 646 Parsons Avenue 43206

Toys, games, or activity supplies are hugely important to kids and their families while spending time in the hospital. While playing with toys helps chase away boredom, Child Life Specialists also use toys to help patients learn about upcoming procedures, teach self-care, and reduce anxiety.

Please help stock the Toy Room shelves with new toys, board games, and art and activity materials. Check out the list below or visit our wish list at: NationwideChildrens.org/WishList.

Toys can be dropped off on December 8 and 9 – but gifts can be selected every day of the week and delivered directly from our Amazon Wish List!

For additional information about Holiday Toy Drop, or if you would like to schedule a large delivery of toys (more than would typically fit in an SUV or car) please reach out to the contacts below.

NationwideChildrens.org/WishList

• Board Games [Connect 4, Sorry!, Trouble, Candy Land]

• Super Hero Figurines

• Marvel Movies

• Stuffies – Teddy Bears are a favorite!

• Fisher-Price/Little Tykes Little People Play Sets

• Fidget Sensory Toys

• Legos

• Slime Kits

• Match Box Cars

• Toddler Toys [All plastic] –Musical or Light Up Such as Baby Einstein Smart Sounds Symphony or Painter Magic

Giving Forward

As an infant, Chase Hartman was diagnosed with hypoplastic left heart syndrome and was frequently an inpatient in the heart center. His family noticed that during his stays in the summer, the toy closet inventory would frequently be low. After Chase was discharged, as a way to express their gratitude, the Hartman family started an annual toy drive in their community. This June they held their third community Toy Drive and dropped off the collected toys during the July 29 Toy Drop.

Where Are They Now?

It is not an accident that the ACE Hardware West Jefferson Retail Service Center is the number one fundraiser in the region that benefits Nationwide Children’s Hospital.

ACE Associate Tamra Chapman is a champion with personal motivation that she uses to ignite her fellow associates.

Tamra is proud mom to Billy, who was diagnosed with Legg-Calvé-Perthes disease at age 11 in 2013. Legg-Calvé-Perthes disease is a rare childhood hip disorder where blood flow inexplicably stops flowing to the head of the femur causing the bone cells to die.

Between 2013 and 2015, Billy endured several surgeries while spending months in a wheelchair.

Then, in 2020, Billy required two more surgeries to repair damage to his hip, including a cadaver bone transplant. That May, Billy graduated from Hilliard Bradley High School and met his goal: with only the assistance of one crutch, he was able to walk across the stage to receive his diploma.

Throughout, Billy never lost his beaming smile and positive attitude.

In 2015, he represented the orthopedics department at mile 15 as a Patient Champion for the Nationwide Children’s Hospital Columbus Marathon and 1/2 Marathon.

Billy returns each year to the Encore Mile in what has become a very special weekend for his mom, Tamra, and the entire family.

2021 was another eventful year for Billy as his sixth surgery was completed in March. Then, in October, he was as excited (perhaps even more than he had been for his own!) to support his girlfriend, Jenna, when she was a Mile Champion at Mile 2. Together, they proudly represent as Patient Champions, forever grateful to the doctors, nurses, and staff at Nationwide Children’s.

Today, Billy has no restrictions on his activities. He runs in several local running events and is currently working at Skyline Chili, saving money for his future.

The Impact Is Felt

CHILDREN’S MIRACLE NETWORK HOSPITALS

Over the past five years, our Children’s Miracle Network Hospitals corporate partners have raised over $7.3 million dollars for the kid treated at Nationwide Children’s Hospital. A majority of these funds were raised a dollar at a time through point of sale, balloon icon and round up campaigns. Whether it’s for one month, six weeks or year round, thank you for joining us on the journey to best outcomes for kids at Nationwide Children’s.

GAMING AND GIVING – ALL FOR A GOOD CAUSE

Extra Life is celebrating their 15 year anniversary. Thousands of gamers, influencers, celebrities and partners have fundraised all year round to support their local Children’s Miracle Network Hospital. Extra Life Columbus has raised over $575,000 to help change kids’ health and change the future for the kids treated at Nationwide Children’s Hospital. In honor of their six-figure fundraising years, Extra Life Columbus Guild members purchased Butterfly Wagons for the patients and families served at the hospital. These wagons offer parents a reprieve and give patients a delightful opportunity to be transported around the hospital in a fun and unique way. Thank you to Extra Life Columbus and all the participants who play games to heal kids!

ACE HARDWARE ASSOCIATES

Associates at the West Jefferson Retail Service Center prove Ace really is the helpful place! Over 30 locations participate in year round fundraising to support the patients at Nationwide Children’s Hospital. This year, one store stood out from the rest. West Jefferson Retail Support Center received the honor of being named Children’s Miracle Network Hospitals Partner of the Year! This location demonstrated an extraordinary dedication to finding innovative ways to fundraise all while bringing awareness to the many services provided at Nationwide Children’s Hospital. Since this location is a Retail Service Center and does not have customers, all of their fundraising efforts were from employees who are committed to supporting the health and well-being of the kids treated at Nationwide Children’s.

Where Are They Now?

Ryan Lanning was diagnosed with anaplastic large B cell lymphoma, a rare form of cancer, in 1999 at age 14. At the time, Nationwide Children's Hospital had less than 500 patient rooms but was already making a name for itself in patient care, research, and surgery. After six months of chemotherapy, Ryan was considered in remission. He was excited to get back to playing baseball, having not missed a single game despite his diagnosis. With a clean bill of health Ryan went on to play baseball in high school and his freshman year of college.

Unfortunately, before entering his sophomore year Ryan relapsed and returned to Nationwide Children’s for further treatment. The hospital Ryan returned to however, had grown significantly. In just a few years Nationwide Children’s went from around 400,000 patient visits a year to accommodating more than 600,000 patient visits a year due to a massive 750,000 square foot clinical expansion.

Though the hospital had grown, “the care remained consistent…” Ryan remembers. During both of his stays, “everyone was always friendly, cheerful and was very accommodating to help make stays better in every aspect.”

After eight months of additional chemotherapy, radiation, and a stem cell transplant, Ryan was once again in remission.

Three years ago, Ryan returned to Nationwide Children’s once again, this time for a very different reason. He came back as an employee.

Ryan is a Senior Internal Auditor, a job that ensures that internal departments are compliant with finance, operations and regulatory standards and that patients and their private health information is safe and secure within

Nationwide Children’s. “It’s nice knowing many of the processes I look at have an impact on patients and families,” Ryan says, “I am able to give back and help those who are in the same position I was.”

Ryan has been busy in his three short years here. Upon arrival, Ryan had already obtained his CPA and CMA, both accounting certifications. At the encouragement of his manager, Marta Quinones, Nationwide Children’s Hospital’s Corporate Audit Officer, Ryan has expanded his knowledge with additional healthcare and financial certifications.

“He is very grateful for all the staff that took care of him and he was thrilled to get a job at Nationwide Children’s,” says Marta. He feels at home here.”

“Nationwide Children’s is such a beautiful place to come to work,” says Ryan, “Having seen it from what it was back in 1999 to what it has transformed into over the last 24 years is incredible. I still come back as a patient for long term follow up appointments every two years and many of the doctors that participated in my treatment are still here today!”

Light Up the Lawn. Light Up A Life.

Please join Nationwide Children's Hospital to once again Light up the Lawn, Light up a Life this holiday season. The hospital's front lawn will be transformed into a glowing display of butterflies during the grand illumination event on Tuesday, November 14. Butterflies will remain lit through the New Year. There will also be community events announced, so that you have the opportunity to see the butterflies in and around the central Ohio area.

During the holidays, when you donate to Nationwide Children's Hospital, your donation will light up butterflies on the hospital lawn for patients to see and in doing so, light up their life. Please watch our website and social media channels for more information on how you can be a part of theholiday magic this year! There will also be community events announced, so that you have the opportunity to see the butterflies in and around the central Ohio area. Sponsorship opportunities are available for our lawn butterflies.

If you have questions or would like more information, contact:

Carrie DiNovo Director, Corporate

Get Your Ducks in a Row: Make a Plan for Your Future

When it comes to charitable giving, many individuals are motivated by a desire to make a lasting impact on the causes they care about. While spontaneous donations are commendable, the power of planned giving should not be underestimated. By "getting your ducks in a row" and incorporating planned giving into your philanthropic and financial strategy, you can ensure that your legacy continues to benefit the causes dear to your heart.

While everyone should have a plan in place, many don’t, and the reason is simple: it makes people uncomfortable. And it’s not just trying to avoid talking about end-of-life, it’s also that many people don’t want to talk about their personal finances. However, here's why it's essential:

Long-Term Impact: Planned giving enables you to create a lasting impact. By designating a portion of your estate or assets to charitable organizations, like Nationwide Children’s, through bequests, trusts, or endowments, you can support causes even after you're gone. This ensures that your values and philanthropic goals live on, making a meaningful difference for future generations.

Financial Planning: Incorporating planned giving into your overall financial strategy can provide tax benefits and optimize your estate. By consulting with financial and legal professionals, you can structure your charitable contributions in a way that minimizes tax burdens and maximizes the value of your gifts.

Tailored Giving: Planned giving provides an opportunity to align your philanthropy with your personal values. It allows you to specify how your funds should be used, and this level of customization ensures that your donations have a direct and meaningful impact on the issues you care about most.

Donor Recognition: Planned giving often opens doors to additional recognition and involvement within the organizations you support. The Kilbourne Society, Nationwide Children’s legacy group, honors and acknowledges individuals who have made a commitment to planned giving. This recognition not only provides a sense of fulfillment but can also inspire others to follow your lead and contribute to the causes they care about.

"Getting your ducks in a row" through planned giving is a strategic and thoughtful approach to philanthropy. Talking about it is only uncomfortable if you make it that way. When it comes to planning for the future, it’s important to think practically first, emotionally second.

If you have questions or would like more information, contact:

Lori Caldwell Aiello, JD, CAP® Senior Director, Major and Planned Gifts

614.355.5417 Lori.Aiello@NationwideChildrens.org

Golden Cubs and the Golden Bear Thanks to the Memorial Tournament presented by Workday

There was a lot of roaring May 31 as the Memorial Tournament presented by Workday held its annual Workday Golden Bear ProAm. The Tournament recognizes Nationwide Children's Patient Champions as Golden Cubs for their strong, driving spirit and optimistic outlook that inspires not only their family and loved ones, but the entire community. On the day of the ProAm, Golden Cubs had the opportunity to take center stage for pre-tournament events, meet PGA TOUR professionals, and enjoy a VIP Tournament experience.

Many thanks to Barbara and Jack Nicklaus, Ayesha Curry of Eat. Learn. Play. Foundation, the PGA TOUR, and Tournament Volunteers that made this experience possible!

Nationwide Children’s Hospital

700 Children’s Drive

Columbus, Ohio 43205-2696

Children NEED HOPE, and HOPE NEEDS A Champion.

You can be part of the most meaningful marathon in the country. We’re proud to announce that the 2023 Nationwide Children’s Hospital Columbus Marathon & 1/2 Marathon will take place on Sunday, October 15 through the streets of central Columbus.

Whether you want to help find cures for pediatric cancer, support patients’ emotional needs through art therapy, or give to the area of greatest needs – you can become a Champion.

Visit NationwideChildrens.org/Marathon to read the amazing stories of our Mile Champions, search the Children’s Champion roster for a friend, colleague, or family member to make your donation or simply donate by scanning the QR Code. It’s that easy to make an incredible impact on the lives of children here and around the world.

Meet Zavier – Mile 12 Mile Champion

Zavier spent over ten weeks at Nationwide Children’s after being struck by an SUV. First responders rushed him to our level one pediatric trauma center, where Zavier was treated for a broken femur, hip bone, clavicle and a C1 cervical fracture, bruising to his lung, kidney, spleen, and a traumatic brain injury. When his physical therapists discovered Zavier’s love of hockey, they centered his rehabilitation plan around it. From that point on, Zavier practiced hard, with conditioning and training like his home-town Columbus Blue Jackets. Every day he would go to ‘practice’, where his therapists acted as his coaches.