>> Live from inside Penn State Children's Hospital, welcome to Ask Us Anything About
THON and Four Diamonds.
I'm Scott Gilbert.
This Friday on the campus of Penn State University, hundreds of Penn State students will get on
their feet and they will dance nonstop.
They'll be on their feet for 46 hours as they dance for a cure to cancer.
It's knows as the Penn State IFC Panhellenic Dance Marathon, THON for short, and here to
talk with us about how the proceeds from THON are put to good use right here at Penn State
Children's Hospital, I have Suzanne Graney, Executive Director of Four Diamonds.
Thank you for being here.
>> My pleasure.
>> And, Dr. Craig Hillemeier is CEO of Penn State Health, he's Dean of Penn State College
of Medicine, and Senior VP for Health Affairs at Penn State.
Thanks for being here, Dr. Hillemeier.
>> Good to be here, Scott.
Thanks.
>> Alright.
Let's start by talk about the event itself.
I know both of you have been many times.
Tell me about the excitement, the energy in the room up there at the Bryce Jordan Center.
What is it like?
How can you explain to someone who hasn't been there?
>> You know, somebody recently described it like the Grand Canyon.
If you see a picture or you hear about the Grand Canyon, you get an idea what it's like,
but until you're really there, you don't fully get it.
I think probably the best description is, it's the largest display of human kindness
I've ever gotten to witness in one place.
There's a spirit of kindness and hope and love that just envelops everybody in the Bryce
Jordan Center for the entire weekend.
>> Yeah, I think, I think it's the energy that one feels when you participate in that,
and you look, and you're part of the crowd.
You just realize how much energy is out there.
It's one of the most win-win things that we see.
We always look at things which make the people who participate in it feel better and better,
and this does that, and it also very much benefits the children who have cancer, and
the research that we're doing to try to conquer pediatric cancer, so it's really one of the
most fantastic things that I've had an opportunity to be associated with.
>> Now, let's talk about the fact that the sole beneficiary of THON is Four Diamonds
so, again, that money is put to good use here on this campus, and we hear the term Four
Diamonds family a lot.
Suzanne, what does that mean?
What are the criteria that people need to meet to become a Four Diamonds family here?
>> The criteria is simple, although it's not criteria that anybody wants to have to meet.
It's that you're a resident of Pennsylvania, that your child has been diagnosed with cancer
under the age of 22 at time of diagnosis, and that you're being treated here at Penn
State Children's Hospital.
>> And, there are a lot of services here at the Children's Hospital that benefit from
THON, in addition to that direct patient care, but then all go back to helping the families.
Right, Dr. Hillemeier?
>> You know, absolutely.
I mean, I think you can add up 24 different types of specialists we have that work with
our children and families that have counselor, from social workers, to physical therapy,
to occupational therapy, to play therapy, to music therapists.
I mean, that's one of the biggest things that they see, is when the guitar comes in the
room, you can see the smiles come out.
And, it really is that that lets us provide an exceptional experience for those children
and their families who are struggling to conquer cancer.
>> You're watching Ask Us Anything About THON and Four Diamonds, live from Penn State Children's
Hospital.
I'm Scott Gilbert, along with Suzanne Graney and Dr. Craig Hillemeier.
We welcome your questions in the comment field below this post.
We can pose them to these two folks live, or even if you're watching this on playback,
feel free to pose your questions, and we'll make sure we get you some answers, as well.
Feel free to just post your exciting comments, too, your reflections of THON, if you've been
up to THON before, things to share with our audience.
I'd like to talk a little bit about research, and how research is funded through THON, and
that is the only way to a cure, so it's so important.
>> It's really important.
We talk about the equation for hope, which is the combination of world-class clinical
care, care for our children, transformative philanthropy, which is exactly what THON is,
needs to be combined with life-saving research in order to have hope for a cure.
That combination of all three are vital, so there has to be a focus on research.
That's where we will find new ways to treat cancer, new discoveries of how to use drugs
differently, and how to boost the survival rate so that we can save every child.
>> Yeah, I think if you look at children with cancer, we now do a lot better than we did
three or four decades ago.
I think almost four out of five children that have a diagnosis of cancer now survive the
cancer, but of course, that means that one out of five do not.
It also means that the four or five that we treat with cancer, we need to come up with
ways that treat that cancer that have less morbidity associated with them, less long-term
side effects associated with the type of treatment we have.
That's why something like THON, which is really for the kids and focused on conquering pediatric
cancer, just gives us so much hope and energy around here as we do our business.
>> Fantastic.
And, Dr. Hillemeier, you touched on that concept of morbidity, some of those long-term side
effects that the existing treatments for cancer can have on children, and Suzanne, that's
part of the reason for the Survivorship Clinic we have right here in this building, right?
>> That's exactly right.
Sadly, we know that two-thirds of the children that survive this have a likelihood of developing
some type of complication that came because of their treatment.
Those types of long-term complications need to be watched long after the patient is done
with their standard cancer treatment.
So, the Survivorship Clinic is making available an appointment for all of our children who
are leaving their oncology care to have follow-up scans once per year to make sure that they're
keeping an eye on any of the complications that might arise from their treatment.
They're also, as they transition out of being children and into being adults, they're given
an individualized medical plan as they transition out of oncology and into a primary care physician,
and their own responsibility for their care, as they become 18 or older, for them to know
what actually happened, what were the risks that were associated with the type of treatment
they had.
They might have been too young to know what the exact course of care was, so that individualized
plan gives them an opportunity to be proactive adults in watching their own health care,
and keeping their eyes open for those complications.
>> You're watching Ask Us Anything About THON and Four Diamonds from the campus of Penn
State Children's Hospital.
I'm Scott Gilbert, along with Suzanne Graney and Dr. Craig Hillemeier.
We welcome your comments and your questions below this post.
We also encourage you to share this post, if you find this to be an exciting topic,
and really, who doesn't?
THON is just such an exciting 46-hour period of time, and it really marks the culmination
of a year of effort up there at University Park, doesn't it?
>> It does, and this year in particular is really special.
This is the 40th anniversary of the partnership between THON and Four Diamonds.
Both organizations existed for five years before we became partners, so it's not our
40th birthday, or anniversary, for either organization, but it's the anniversary of
the 40th year that we have been dedicated partners working together, finding ways to
conquer childhood cancer, and supporting all of the families who are being cared for here
in our Children's Hospital.
>> And, we're marking that anniversary in some interesting ways, including 40 faces
on the Four Diamonds website, right?
>> Yeah, there's a great campaign that's online.
You can find it on THON social media channels and Four Diamonds.
You can also find it at fourdiamonds.org, and you can see some of the people that were
instrumental in putting this partnership together between THON and Four Diamonds, and those
that helped to keep it strong over the course of 40 years.
>> Dr. Hillemeier, what is it like for you to look back on, I mean, 40 years of a partnership
here, because before you were in your current position, you oversaw the Children's Hospital
here, so you know the subject matter very well.
>> Yeah, it's been really exciting to see this evolve over time, and to see the students
every year pick up the mantle from the previous year, and to have the energy and the enthusiasm
to make it a successful year.
You know, we always say, it's really about the relationships that are formed, and it
really is the relationships between the Four Diamonds families and those students, who
are really spending all year trying to figure out how to support those families, that actually
culminates in THON, that I think really makes it what it is today.
It's really a pretty exciting thing.
>> And, the students from THON, those who take part, are a presence right here in the
Children's Hospital throughout the year.
We see them wearing their t-shirts and interacting with patients.
It's not just up at that event, although there is plenty of it up there, but they're here
throughout the year, too.
>> Yeah, we love that we have the opportunity to bring the students actually to our hospital,
to let them see what is the impact of all of the work that they've been doing.
They get an opportunity throughout the course of the year.
We host scheduled tours for these students, and they are from students at University Park,
but also from all the commonwealth campuses, have an opportunity to sign up to come on
a tour.
And, we're able to introduce them to a family, and let them hear a personal story about how
they're being helped because of Four Diamonds and THON.
They get an opportunity to go into one of the research labs and hear from the scientists
about what a difference it is that they're making, and how that funding helps to sustain
what they're doing in how they're looking for new ways to treat childhood cancer.
It gives all of those young, vibrant college students an opportunity to, hands-on, see
what's happening here at the hospital, and what they helped to make happen.
>> What a fantastic opportunity for them, and for families and patients, too, I'm sure.
>> Oh, absolutely, and I think one of the things that people oftentimes don't really
understand is, it's not really just the 700-plus dancers who really put out to make THON so
special.
There are literally many thousands of students, each of whom spend over hundreds of hours
making this whole THON successful.
>> Looks like we've got a question.
>> We do, indeed, and we invite you to add your questions to the comment field, as Madison
has just done.
Madison's asking, "What are some of the things that you've been researching and developing
recently?"
So many things happening here behind the scenes.
>> Well, it's amazing and, you know, the dollars that come through THON to Four Diamonds primarily
make sure first of all that patients and families have all of their needs taken care of, and
that we provide them exceptional care.
But, those dollars over and above that go to provide for the research which is going
to conquer pediatric cancer.
And, much of that research actually focuses on those cells that cause the cancer, that
in some ways seem to act as if they're immortal.
They don't have the normal type of senescence, the normal type of life cycle that eventually
dies, as normal cells do, and that's why then they take over and they oftentimes cause problems,
then, as cancer.
And so, much of the research that we have going on tries to look at what we call the
molecular mechanisms of why those cells continue to grow and grow and grow, and eventually
result in what we call cancer.
And then, how to figure out how to interrupt those mechanisms that allow those cells to
go on.
And, it's really exciting, some of the work that we're doing, in terms of the molecular
mechanisms that make the DNA go on and replicate, that cause all of those intracellular signals
that result in cell growth, to not sort of go through their normal cycles, but they just
perpetuate themselves.
And, we have some really exciting things happening in that area.
>> It is exciting work, and it's work made possible by those who are dancing up at State
College this weekend.
>> It's true.
One of the other projects that is really simple to understand, because this is all really
complicated science, Dr. Sinisa Dovat is working specifically in high-risk leukemia, and he
is looking at a particular gene.
You know, all of us have genes that can turn on and off, depending on how they're stimulated,
but the gene that he's looking at is called Ikaros, and it's believed that if we can figure
out how to turn on and off Ikaros, we could figure out how to turn on and off leukemia,
which is just startling to think that we're that close to having identified the gene.
Now, it's figuring out how to manipulate it, but it gives hope to all of us that we're
close to finding answers that scientists have been looking for for centuries, or generations,
at least.
>> Absolute.
Very exciting.
You're watching Ask Us Anything About THON and Four Diamonds from Penn State Children's
Hospital.
Thank you for the questions and the comments so far.
Our next comment, or I should say question, comes from Joni.
Joni is wondering if there have been any positive outlooks for the future in making childhood
cancer safer, fewer long-term side effects.
I think she's talking about that morbidity issue, and the fact that some of the treatments,
I guess you could say that they cure cancer, but down the road, the patients live with
those long-term effects.
>> So, as Suzanne pointed out, many of the patients who survive pediatric cancer end
up having difficulties later on, and that's why it's important that we follow them, but
the real answer to that problem is to try and figure out why they have those problems.
And, there's some really exciting understandings about individual susceptibility to the medications,
because not all of these medications are going to impact each individual the same way.
So, understanding the various molecular mechanisms and enzymes that individuals have to deal
with the particular mechanisms directly impacts the toxicity or side effects they're going
to have.
So, if we're able to use the terms precision medicine or personalized medicine to understand
how the individual is going to respond to that therapy, we can then better prepare a
therapy which will minimize the side effects and still maximize the effect against the
cancer.
So, that's probably one of the biggest things that's come about in the last 5 or 10 years,
is understanding that not all of the medicines that we use will have the same side effects
on everyone, and trying to individualize that therapy.
We're also getting a lot better in terms of monitoring the side effects during the actual
therapy that might then go on to produce long-term toxicity or side effects.
So, it's a really good question, and I think there's a lot of really good work so that
we have less, we use the term morbidity, less morbidity associated with these medicines
in the long term.
>> We mentioned a couple websites.
I want to throw a couple things out there, because as the energy ramps up heading into
this weekend, you have some more opportunities to learn even more about THON and Four Diamonds,
and that connection that's been in place for 40 years, including a television program this
Friday.
It's called "Good Day PA!"
You can catch it at 12:30 p.m. in the Harrisburg area on ABC 27, that's WHTM-TV.
That is at 12:30 on Friday on Good Day PA!
We also encourage you to check out thon.org/webcast.
If you're not able to make it up to State College, or even if you're only up there for
part of the weekend, and want to see more, including the big reveal at 4 p.m. on Sunday,
that's a great way to check it out online.
It's always, and that's a student-run production, as well, too.
>> It is.
There's a group called 46 LIVE, they're all communications students from the College of
Communications, that keep that livestream going, and they produce all of the content
that's on there.
It's a huge undertaking, but we know that there were more than 100,000 people that logged
in to watch live at some point during THON weekend last year.
We're certain that it will be just as compelling, and we hope as many people log on.
We also, I wouldn't be doing my job very well if I didn't encourage people to also use thon.org
to make a donation and be part of that big reveal that happens at the end, and help THON
be successful.
And, when you're helping THON be successful, you're helping Four Diamonds and our Children's
Hospital be more successful in how we're able to treat children and continue to look for
a cure.
>> Fantastic.
Suzanne Graney, Dr. Craig Hillemeier, thanks so much for being part of this interview today.
>> Thank you.
>> My pleasure.
>> Thank you for watching, and we appreciate the questions which, as we mentioned before,
if you're watching this interview on playback, feel free to add your questions or your comments
below.
It's not too late.
We could even get some answers to those questions, if you'd like, after the fact, and as time
goes on, because we know a lot of people check these videos out afterward.
So, thank you so much for watching.
Thanks again to my guests, and we appreciate you watching Ask Us Anything About THON and
Four Diamonds, from Penn State Children's Hospital.