The word of the day was “awareness” at Citizens Bank Park this September as the Philadelphia Phillies hosted their 7th annual Childhood Cancer Awareness Night. As we learned, awareness brings funding to support improved pediatric cancer treatments and research that ultimately save lives. While at the game that night, we sat down with William Martin, president of the Lisa Dean Moseley Foundation, to learn more about the impetus behind the foundation’s historic $78 million gift — $25 million of which is dedicated for sickle cell disease research — and get an update on how it’s already transforming treatment for children at Nemours Children’s Health and beyond.
Later in the episode, we were joined by Mary Newman, Director of Nursing for the Lisa Dean Moseley Foundation Institute for Childhood Cancer & Blood Disorders at Nemours Children’s Health, who explains how the generous gift is impacting lives now and will into the future. Mary oversees all aspects of the Institute’s work and plays a key role in working with the Lisa Dean Moseley Foundation to implement the shared vision of transforming pediatric cancer treatment.
Carol Vassar, producer and host
Guests:
William J. Martin, Esq., President, Lisa Dean Moseley Foundation
Mary Newman, MSN, RN, CPON, NE-BC, Director of Nursing, Lisa Dean Moseley Institute for Childhood Cancer & Blood Disorders at Nemours Children’s Health
TRANSCRIPT
CAROL VASSAR: Welcome to Well Beyond Medicine, the Nemours Children’s health podcast. Each week, we’ll explore anything and everything related to the 80% of child health impacts that occur outside the doctor’s office. I’m your host Carol Vassar. And now that you’re here. let’s go.
(SINGING) Let’s go– well beyond medicine.
[THEME MUSIC]
DR. CORINNA SCHULTZ: Awareness brings research funding to improve treatments and improve children’s lives. At Nemours Children’s Health, we’re here to make sure that every child has the best quality of life possible.
DR. JONATHAN POWELL: Big thank you to the Philadelphia Phillies, to the fans, and for everyone who helps us in the fight against pediatric cancer.
CAROL VASSAR: The word of the day was “awareness” at Citizens Bank Park in early September as the Philadelphia Phillies hosted their seventh consecutive Childhood Cancer Awareness Night before a recent game against the Florida Marlins. And as you just heard from Nemours Children’s Health pediatric hematologist/oncologist Dr. Corinna Schultz, awareness brings funding to support improved pediatric cancer treatments and research that ultimately saves lives.
And it’s true. Take, for example, what happened in March 2023, when the Lisa Dean Moseley Foundation stepped to the plate with a $78 million gift to Nemours to create new and innovative research programs and expand Nemours’ capacity to provide clinical care for children with cancer, sickle cell disease, and other blood disorders. While at the game, our podcast team sat down with William Martin, president of the Lisa Dean Moseley Foundation, to learn more about the impetus of this historic gift and get an update on how it’s already transforming cancer treatment for children at Nemours and beyond.
[AUDIO LOGO]
WILLIAM MARTIN: It’s fortunate that the Board of the Lisa Dean Moseley Foundation shares the mission that essentially was established by Mrs. Moseley during her lifetime– but then again, she passed away five, six years ago, and the board has continued her goals. And what Lisa wanted to do was to further medical research, particularly in areas that for whatever reason, had been underserved or overlooked. And when Dr. Larry Moss, the head of the Nemours system, came to me to suggest that Nemours would be a very, very good partner to further that mission, it piqued my interest, and it piqued the interest of our board.
One of the things that sold us was the couple elements of the program. One was that we were able to put together with Nemours a long-term program to further research. Not only are we going to be supporting research within the Nemours system, but Nemours will help us administer a research program that will essentially be opened up to other organizations– other hospitals and medical research facilities across the country and the world with the thought that collaboration is key. So one of the things that was an impetus was this gave us an opportunity to collaborate with an organization that could do it much better than we could as a small private foundation.
We’re fortunate that Mrs. Moseley, because of her generosity, was able to leave us considerable financial resources. But what you want to do in that situation is to make sure the money is well spent– that the money goes to further research, and it doesn’t get caught up in a lot of administrative overhead and the like. Nemours was the perfect candidate. We have some other programs that we partnered with, if I could mention them– the American Cancer Society, ALS, and Helen Graham Center in Delaware.
But Nemours was clearly the biggest financial commitment that the Moseley Foundation made. And over the course of the next ten years, what we will see is those funds be used to expand considerably the hospital’s ability to treat pediatric cancer patients in the Wilmington, Delaware, campus, which is serving a regional area. It’s not just Delaware. That was a huge draw for me, in particular.
And one of the things that was serendipitous, but the hospital– and you’ve been up to the fifth floor where the new Moseley Institute is going to be located, and where all these cancer patients are going to be treated, it was empty space. So, it was the perfect situation for us to move in with Nemours guiding us. And I know there are a lot of people– probably some you’ve talked to today, who are excited about all the planning that’s undergoing on with regard to how the fifth floor is going to be fit out in a way that not only facilitates the treatment of the patients, but also their families as well. So that was an exciting aspect of it. The research was an exciting aspect of it.
And then, finally, if I could, the other thing that Dr. Moss impressed upon me was the fact that we would basically endow a chair who would be in charge of sickle cell research at Nemours. And as you well know, and we talked about earlier this year, sickle cell has been historically and criminally underfunded. And so this was an opportunity to do something, to do good, and to focus on an area of medical research that had been overlooked in the past. And I think Lisa would have loved that.
CAROL VASSAR: I see this– and I think a lot of people at Nemours see this as a manifestation of “well beyond medicine.” Would you agree?
WILLIAM MARTIN: Oh, absolutely. I think there’s an aspect of doing good work. And I’ve been fortunate in my legal career. I’ve worked with a lot of physicians.
And in fact, I was telling someone earlier today, have you ever worked with pediatricians? And the person said, no, not really. And I said pediatricians are the best people in the world.
I’ve worked with a lot of physicians. They’re great. They’re orthopedic surgeons– and every type, anesthesiologists, radiologists. But the pediatricians are the ones that really love their work. And so to the extent that we can help not just the pediatric oncology providers but also at Nemours’ pediatric and orthopedics and many other specialties, it’s an exciting collaboration.
I’ve often thought Mrs. Moseley grew up as a child Mrs. Moseley grew up as a child two miles away from the hospital outside of Wilmington, Delaware, right across the Brandywine River. And as we look out on the fifth floor, you can essentially see where she grew up. And that closes a loop. I think it’s fortuitous. And there were a lot of aspects of this grant in addition to, as I said before, doing good work.
And what are we really trying to do? We’re trying to save lives; we’re trying to improve outcomes, not just with regard to pediatric oncology but also the bloodborne diseases, and in particular sickle cell disease. And I can tell you from talking to the researchers they’re very optimistic that the treatments will get better and better, particularly with regard to sickle cell.
CAROL VASSAR: And ultimately benefit children, not just at Nemours, but across the nation, across the world. And the research into both pediatric cancer and sickle cell disease is something that really fascinates me. Is this going to fast-track a lot of that?
WILLIAM MARTIN: I hope it is. One of the aspects of the grant was to fund a gathering, whether it’s every year or every two years. And it would be an opportunity for research teams to report on their work and to collaborate with other researchers doing similar kinds of studies. And not just with regard to Nemours, but we’re doing this with some others– I’ve had an opportunity to sit in on some of these sessions.
I can tell you, I mean, I understand about 3% of it all. I’m a lawyer. I can try to keep up. The thing that impresses me is the enthusiasm that the researchers who are presenting have and the feedback that they get from their colleagues in the audience.
And I know, working with people at Nemours, that as we put together this– whether it’s some sort of a seminar or a gathering, it’s my hope that the opportunity that the researchers will have to work with each other is going to cause new ideas to come forth. And all you have to do is listen to what they’re doing now. It’s very exciting. It’s the kind of thing where you shut your eyes– if you Rip Van Winkle and you shut your eyes, and woke up in six months or 12 months, you get the sense that there are going to be strides made.
And you’ve got to be sharp and stay on it on a current basis, or you’re going to miss a lot of the good things that are happening. That’s my hope, and I know our board shares that view. We have tried to be a model for other private foundations.
One of the things I like to say is that we have sponsored research in the past. But we don’t have the kind of medical horsepower that Nemours has, or that the American Cancer Society has, or any of these other folks that we collaborate with. So, when we find teams that can vet proposals and identify where the money should be focused, it makes our job so much more efficient and ultimately more effective.
CAROL VASSAR: It’s interesting to hear you talk about research. In many ways, it feels as though we’re on the precipice of some really big discoveries with precision medicine, with personalized medicine, and with AI. And hopefully, that will bear some fruit fairly soon with a lot of help from the Lisa Dean Moseley Foundation.
WILLIAM MARTIN: Well, I share that. We all share those goals. But the other thing, too– the flip side of it all, is that one of the great things about an event like tonight at Citizens Bank Park is to see the patients and their families here enjoying a game and essentially surviving.
We’re going to celebrate survivors in a few innings. We’ve all been touched, I’m sure, by cancer. We’ve lost loved ones.
There is something particularly tragic about a child who has to endure cancer, sickle cell or other similar diseases. And I’ll tell you, it’s fascinating and really exciting to see the kids out here enjoying themselves tonight. And we all hope that more and more of those kids are going to be able to basically be cleared and basically put this in the rearview mirror.
CAROL VASSAR: William Martin is the president of the Lisa Dean Moseley Foundation based in Wilmington, Delaware.
[AUDIO LOGO]
Mary Newman is the director of Nursing at the Lisa Dean Moseley Foundation Institute for Cancer and Blood Disorders at Nemours Children’s Health. As a top-level manager of the institute, Mary oversees all aspects of its work and is a player in working with the Lisa Dean Moseley Foundation to implement the shared vision of transforming pediatric cancer treatment. Let’s hear from Mary about the Institute and how the generous donation from this foundation is changing lives both now and for generations of children to come.
[AUDIO LOGO]
MARY NEWMAN: So the Lisa Dean Moseley Foundation Institute for Cancer and Blood Disorders is treating children from age 0 to adulthood with different types of childhood and blood cancers– child cancers and blood disorders. We also have a transplant and cellular therapy program, and it’s a pediatric program.
CAROL VASSAR: And there’s research involved there, which we’ll get to in a little while. In March, there was that huge donation from the Lisa Dean Moseley Foundation– $78 million, as I recall. How has that changed the work you’re doing with patients here in Nemours?
MARY NEWMAN: In one word, it’s transformative. We are rethinking how we deliver care to patients and families who are being treated for cancer and blood disorders. One of the things that’s most amazing is developing and designing a space that promotes wellness during a time of illness. We are able to grow our research programs and to be able to bring in far more scientists, people that are engaged in research that are going to be able to help find a cure for our patients someday.
CAROL VASSAR: Is this going to accelerate treatments and get us closer to cures or better treatments where children, in particular, live longer?
MARY NEWMAN: Absolutely. The commitment that the Lisa Dean Moseley Foundation has made for us to advance research at the Nemours Children’s Health is going to be transformative as well.
CAROL VASSAR: And it’s not just cancer. It’s sickle cell disease. Tell us more about that.
MARY NEWMAN: They dedicated $25 million towards sickle cell research. And when I think about our sickle cell patient population, there’s a lot of health inequities that we see. And this is a population that is often underserved. And I am so excited to finally see that we will be able to dedicate not only the dollars for research and bring more innovative research to Nemours, but we also will have an endowed sickle cell chair, who is going to be able to hopefully draw in more talent, more scientists to further the research activities that we’re doing right now.
CAROL VASSAR: But it’s not just for Nemours patients, is it? This is for children everywhere.
MARY NEWMAN: Yeah, I hope we can reach as many children as possible because I think one of the things– when we started talking about the program that we are trying to envision and create and the care delivery model, it’s going to be a different experience for patients and families. And the more patients and families we can reach, the better.
CAROL VASSAR: We’re sitting here in Citizens Park as we hear the home runs going and, right on cue, the music. We’re surrounded by people becoming aware of childhood cancer– more aware. What do you hope the average fan goes home with in terms of messaging with regard to pediatric cancer and blood diseases?
MARY NEWMAN: I appreciate your asking because that’s the whole purpose of Childhood Cancer Awareness Month and Sickle Cell Disease Awareness Month. It’s to create awareness. The whole goal is that we create awareness and, above all, to help to find a cure for our patients, to be able to bring in more therapies for our patients.
When you think about adult cancer and all of the medications that are developed, very few are developed for children as a first line of treatment. We learn from what adult cancer tells us. And so being able to bring that to our patient population is going to be incredible.
I think the most important thing is that we honor the children who have been diagnosed with cancer, honor the children who did not survive cancer and their families, and really help to create space to raise awareness around how important it is. We have great success rates with childhood cancer. But we have a lot of work still to do.
CAROL VASSAR: Let’s talk about that statement that you made with regard to how treatments often start with the adults and trickle down to the pediatric world. Are we going to start seeing more clinical trials directly in the pediatric world at this point?
MARY NEWMAN: I really hope so. I think right now, there are only a handful of drugs that have been developed primarily, starting with pediatric patients. And as I mentioned, some of the drugs that we are currently using for childhood cancer have been around for decades. And so I really hope as we raise awareness, and more people are talking about the attention that childhood cancer needs and sickle cell disease research needs, that’s going to be really important.
CAROL VASSAR: Now, we talk about going “well beyond medicine” here at Nemours Children’s Health. What does that mean to you?
MARY NEWMAN: I really think “well beyond medicine” is exactly who we are. And we want to promote wellness in the face of illness. And when you try to do something like that, you really have to pull not only the entire care team, all of the disciplines, but we have to get outside the walls of the hospital.
We have to reach out into the community and reach patients and families before they ever enter our building. We want our children to live their best lives in the face of devastating diagnoses. And we can do that now.
CAROL VASSAR: You’re a nurse. You’ve been with Nemours for, I believe, over 20 years. Is there a patient’s story that stays with you? And you’ve pretty much been in the oncology department doing your work. Is there a patient’s story that stays with you that you can share with us? Don’t give away too much private information.
MARY NEWMAN: Yes, there’s probably one story that solidified my desire to always work in pediatric hematology/oncology nursing. And that was a patient named Justin. And he was an incredible person. But he inspired me as a person, as a nurse, as a mother, to be my best all the time.
And I realized in order to care for patients and families; we really have to also make sure that we care for ourselves. Justin was an incredibly spiritual person and really gave us all a lot of hope. And he didn’t survive his journey, but I learned so much from him.
And I’ve also learned that in nursing, one thing that’s really important is that nurses take care of each other as healthcare workers. We need to take care of each other because we’re only at our best when we are caring for each other. Nurses are resilient. Physicians are resilient.
But this is hard work. And it’s the patients that inspire every single day. It’s the reason we come back. Our hardest days are sometimes our best days.
CAROL VASSAR: And I’m sure COVID didn’t help with any of that. Tell us about that time frame. That must have been hard.
MARY NEWMAN: Cancer doesn’t stop for COVID. So I think the hardest part about COVID was we had children who were diagnosed. We had children who were well into their cancer journey and children who maybe were at the end of their journey and weren’t going to survive.
And COVID created so many restrictions on how well we could create that psychosocial support for our patients and families. And that was so hard, not only obviously for the patient and family, but as members of the care team, to not be able to give them everything that they need. That was just such a challenge. And we navigated it as best we could and tried to always make sure that families felt well supported.
But there were so many restrictions. So we knew that children going through a journey of cancer or sickle cell disease being admitted to the hospital didn’t have their full village surrounding them being able to support them. And the parents, the siblings, other members of the family they all need that level of support, too.
CAROL VASSAR: Anything I haven’t asked you about that you’d like to share?
MARY NEWMAN: No, just I just want to say that, first of all, I am eternally grateful to the Lisa Dean Moseley Foundation for this incredible donation that they gave us. I’m grateful to Nemours and the Phillies for their partnership because you listen to the energy tonight, and you know that we are creating awareness. being able to stand on that field tonight, holding the Childhood Cancer ribbon, was so powerful. And it’s letting everyone who is in the stands– everyone who’s listening or watching, to understand how impactful childhood cancer is and how we can all do so much more to raise awareness around this
CAROL VASSAR: Mary Newman is the director of Nursing at the Lisa Dean Moseley Foundation Institute for Cancer and Blood Disorders at Nemours Children’s Health
[AUDIO LOGO]
Nemours Children’s Health, as the Phillies’ official Children’s Hospital, shared childhood Cancer Awareness Night with patients and families, providing once-in-a-lifetime experiences for young cancer survivors, who took the field with their favorite Phillies players, danced with the Philly Phanatic, and performed a rousing rendition of “Take Me out to the Ball Game.” Families, survivors, Nemours associates, and Phillies front office staff also took part in a moving pregame ceremony featuring a giant gold ribbon– gold being the color of Pediatric Cancer Awareness, to honor children lost to cancer. It also brought Nemours associates to our microphones to share with us what Well Beyond Medicine means to them.
JANE MERICLE: Well, I have to say, Carol, we sat here just a few minutes ago. And we watched incredible, brave children out on the baseball field, seeing some of the stars that they admire. But they are the ones that are the champions, and they have been through a lot.
And yet, they are still out here. And they have different stages of recovery. And I have to say that “well beyond medicine” is so represented by them. They are powerful voice for our future generations.
CINDY BO: “Well beyond medicine” means so many things to me. At work, at Nemours Children’s Health, that means that we go beyond the walls of our health system to go into the communities to care for children. It means that we’re embedded in schools.
It means that we’re out and about with community stakeholders, really running community events. It means going to our patients to where they belong. It also means, from the patient’s perspective, seeing health, seeing wellness, seeing well-being. Nemours Children’s Health is very committed to health.
And we’re not looking for just children to come to us during sick care. In fact, what we want to be able to do is create the healthiest generations of children. And that takes a lot of work upfront to look at prevention and wellness and partnering with some of our stakeholders.
To me personally, it means that I have hope, and I see hope. I see the vision that Nemours Children’s Health is trying to bring because, as a member of the team, I am partially responsible for being able to create happy, healthiest children of this generation and more. I look forward to having my sons in this world to live a healthier life. And I have everything to thank for Nemours and what they do every day.
JEREMY VANDERSLICE: So first, “beyond medicine” to me means making a difference outside of just the walls of the hospital and addressing health and wellness in the places where it really happens and where it starts, right in the home, in the schools, and the community, and starting there. For me and my work, it’s actually a lot of fun because when people hear about that and hear about Nemours doing that, it’s something they’re interested in getting involved with. They might just not know how they can make a difference. And showing them the different ways that they can partner with us on the philanthropic side, giving whether it’s a small amount monthly or a larger amount. But whatever it might be, helping them see how they can make a difference through any donation and the work is doing, both in the walls of Nemours with the children that we see, but also out in the community and out in the schools, and making a difference for the families where they’re at.
CAROL VASSAR: Nemours associates Jeremy Vanderslice, Cindy Bo, and Jane Mericle. And by the way, congratulations to the Philadelphia Phillies, who are the National League’s number one wild card team, which puts them in the playoffs. Go, Phillies.
(SINGING) Well beyond medicine.
Thanks for listening to our conversations recorded at Citizens Bank Park, home of the Philadelphia Phillies, with me, Carol Vassar, and our guests William Martin and Mary Newman. Want to shout out your own wishes to the Phillies? Leave a voicemail on our website– nemourswellbeyond.org.
That’s also the perfect place for you to submit ideas for upcoming episodes and leave feedback and comments. That’s nemourswellbeyond.org. While you’re there, check out our other episodes and subscribe to the podcast.
Thanks to Che Parker, Susan Masucci, Cheryl Munn, and Amy Hicks for their production assistance. Join us next time as we talk with a Jacksonville family about their experience with sickle cell disease. Until then, remember– together, we can change children’s health for good well beyond medicine.
(SINGING) Let’s go– well beyond medicine.
[THEME MUSIC]
