Announcer: Welcome to Business like 360 with Christy Kaye, where we get to know thought leaders and innovators, trends and impact in the world of business and we see firsthand how business and life have evolved.

Business Life 360 with Christy Kay is made possible by Promedica, a locally owned, nationally recognized, not for profit health care network that has a strong commitment to clinical excellence, providing safe, high quality patient care, and addressing social issues that impact health.

John B and Lillian E Neff, College of Business and Innovation at the University of Toledo Developing lifelong Leaders for the World of Business and by KeyBank, also by viewers like you.

Thank you.

Kristi: Welcome The Business Life.

360 I'm your host, Christy Kaye.

This episode is dedicated to discovering innovations in disease advancement and management, specifically as it relates to two diseases cancer and progeria, which is an ultra rare, fatal pediatric rapid aging disease.

So come along with me as we explore, learn and grow together.

This is Business Life.

360 And now I welcome two of my all time favorite people and business life.

360 guests.

Kaylee how go a champion, a fighter for and a groundbreaker in the world of progeria research and her fabulous mom, Marla Howe CO. We have followed Kaley's story, which is nothing short of remarkable.

So welcome back to business life.

Three six you two, it's great to have you here.

Kaylee Halko: Great to be here.

Kristi: We're talking a lot more about progeria, medical research, and some of the things that have been happening in the world of progeria and our viewers may not know that those who have Rosaria often have hip dislocation, shoulder and joint issues, arthritis and things that have to do with your heart.

So, Kelly, you have had a series of surgeries in your life.

Tell us a little bit more about some of those, if you would.

Kaylee Halko: I was I had four hip surgeries and my hips would dislocating.

So they also screws and things to keep them in place.

And I had some kidney stone surgeries and really wasn't a deal.

They just sitting down.

Kristi: But yeah, sounds like a big deal to me.

I don't know.

Kaylee Halko: I was recycling was my open heart surgery.

Kristi: Which we're going to talk a little bit more about.

And then Marla, I know about, was it about a year ago or so you discovered that Caylee had a heart valve that was going bad?

Marla Halko: Yeah, it was actually on New Year's Eve that we had found out that.

Yes.

Kaylee Halko: Yeah.

Marla Halko: Of last year that she was that she was going to need to have something done.

Kristi: And for someone with progeria, it's different in terms of protocol procedure than it would be for someone who doesn't have brassiere yet.

So typically it would be a balloon.

You were mentioning.

So what is the procedure actually that Caylee was going to need?

Marla Halko: Well, originally they had thought that that the balloon would work and then they realized that it wasn't going to.

I don't under I'm not a doctor, so I don't know exactly why they decided that wasn't going to work.

And then it was just back to the drawing board because they don't usually they've never done anything for a child with progeria for this problem and this procedure that they had done in the past.

They said this this would work.

Kristi: So as I understand it, it's called an aortic stenosis surgery.

And what you needed was a valve.

Also, correct?

Kaylee Halko: Yep.

Kristi: And you and your friend Zach, who also has progeria, are the only two in the world who ever had the surgery.

Is that how I understand it?

Kaylee Halko: Yes.

Yeah.

Kristi: So how helpful was Zach in this process?

Did he have his before you had yours?

Kaylee Halko: Yeah, he had his a couple of weeks before mine.

We had the problem about we were both having a problem about the same time.

So.

Kristi: And something that has been really important to you, Marla, I know.

And to your family is the Progeria Research Foundation something that you've been able to really rely on as Caylee has had her journey and you as well.

Tell us more about that relationship.

Marla Halko: We for when she was first diagnosed, we were put in contact with them, but there was no treatment or anything yet.

Nothing.

So but then finally, when she was diagnosed at one four, they had decided we were going to do this clinical trial so that she was able to.

And from there we now were able to do heart surgeries that we didn't know was possible.

So, I mean, they just keep I'm just so thankful for them because they've helped her quality of life with with all their advancements and and that they're doing.

And before them there was nothing out there for these kids and they've just made so much progress just in her short life, you know, from nothing to all that they've done.

Kristi: It sounds to me like they were the best of resources for you.

Were you familiar with progeria?

I was not.

that my husband had heard of it, but I had not.

Kristi: And Kelly, I can't say enough about how you have really been the pioneer in progeria and allowing others in the future to undergo this surgery successfully.

So again, thank you for all you are doing to be that pioneer and that innovator.

It is remarkable.

Yeah.

So, Kelly, you know that when you are in business, Life360, you've done this before, we get to do Quick Hits and I asked you a series of questions and you give me rapid responses and our viewers get to know you a little better.

Are you ready for this?

Kaylee Halko: Yeah.

Kristi: We might sneak your mom into one or two of these as well.

Kaylee Halko: Yeah.

Okay.

Kristi: Here we go.

Your favorite show to binge watch.

Kaylee Halko: And I've probably seen the Flash, like, ten times.

Kristi: Your favorite food.

Kaylee Halko: Raspberry probably.

Kristi: What is the best part about being a high school graduate.

Kaylee Halko: As of right now?

I mean, I haven't been in school, but I'll go back.

I'll go to college.

So then now and but right now just relaxing.

Kristi: So yes.

And after that last surgery, I'm sure some downtime was really helpful for you.

Kaylee Halko: Yes.

Yeah, it was.

Kristi: What is your favorite pet of all time?

Kaylee Halko: I'll have a dog and guinea pigs, but probably dogs.

Kristi: Yes.

All right.

One in particular.

Kaylee Halko: Corgis.

I like those legs and a fluffy hair.

Kristi: And how would you describe your personality in Marlette?

Do you want to chime in on this too?

Kaylee Halko: Yes.

You can say.

Kristi: A word to describe Kaley's personality.

Marla Halko: Determined.

Yeah.

Yes.

Kristi: And I have to say funny.

Kaylee Halko: Like you make those.

Kristi: Mile so, so much.

I love it.

You are the best sense of humor of anyone I know.

And you're also very stylish.

So I have to ask you, what is your favorite fashion accessory to fashion?

Kaylee Halko: I maybe I shoes.

I didn't know she is.

Kristi: You always have a great pair of shoes, I would have to admit, amongst everything else.

So what advice do you have for young girls who may be going through a tough time in their lives and.

Kaylee Halko: I guess just have a good support system?

Kristi: Great advice.

And that's what I have.

Thank you so much for doing Quick Hits with us.

And Marla Kelly, I know this has been quite a journey.

And Marla, you have really, along with your husband, Tim, worked really hard to find the resources for Caylee.

And I know it's been sacrificing for you as well.

So in addition to what you're doing as a mom, I mean, my gosh, we want to thank you and Kaley for being in business life.

360 And what an inspiration.

Thank you.

Thank you.

We know that this pathway has been made possible by Marla and her husband, Tim, making sacrifices and doing research, aligning with proof and making sure that Caylee has had and continues to have the best care possible.

And for Caylee, she has been a courageous leader and a pioneer.

Breaking barriers for those diagnosed with progeria.

Thanks to both of them for all they've done to change the world for the better.

And Caylee, I can't wait to hear what you're going to do next.

And now we welcome to Business Life 3060.

Dr. Leslie Gordon, who is a co-founder and volunteer medical director for the Fragility of Research Foundation.

She is the principal investigator for the ongoing proof programs and is an investigator on the progeria clinical treatment trials at Boston Children's Hospital and professor of pediatrics at Hasbro Children's Hospital in Providence, Rhode Island.

Welcome, Dr. Gordon, It is a true pleasure to have you here.

Dr. Gordon: Thank you so much for having me, Kristie.

I appreciate it.

Let's start by you giving us an understanding of your organization's mission.

Dr. Gordon: Well, thank you.

Yes, we've founded my husband, my sister and I and our colleagues and friends founded the Progeria Research Foundation after my son, Sam, was diagnosed with progeria.

That was back in 1999 that it was founded.

And at that time, there was pretty much nothing known about this ultra rare disease.

So our goals were very simple, very important to discover the cause, treatments and cure for progeria.

We've discovered the cause.

We have our first ever treatment that was just approved in part because of KALYDECO.

And.

And we're on to the cure.

Kristi: Hmm.

And this personal connection you have, we'd like to hear a little bit more about Sam, please.

Would like to know about your son.

Dr. Gordon: Oh, thank you for asking.

Well, this is Sam right here.

See him right in the back.

Right, Right here.

Right next to me.

Sam was just a fabulous, fabulous kid.

And what can I say?

He, like all of the.

The children with progeria.

He had an amazing personal personality, a lot of courage.

And actually, he did this.

He he did a TED Talk that people might want to tune into because he has, I think, over 90 million views now.

So you want to look him up.

He's got quite, quite a talk and quite a personality.

Mm hmm.

Kristi: He sounds truly amazing.

I'm sure he was.

And Carly mentioned when she was here that she has been in clinical trials since she was four years old.

And that was through the Progeria Research Foundation.

And now she's 19 years old.

So I'm curious to know what advancements and progress has been made in progeria since she was first diagnosed and when she was in those initial clinical trials.

Dr. Gordon: Yeah.

Yeah.

She's an amazing, amazing well, now young woman, but she was always an amazing kid.

Yeah, we we had we initiated the very first clinical treatment trial for progeria ever, and that was at Boston Children's Hospital.

That started in 2007.

But before that, we needed to discover the genetic cause of progeria so that we could understand the disease enough to discover a treatment, a potential treatment, and start a trial.

So we were really starting from scratch.

And Caylee was one of the first kids in her family, was one of the first families to step forward and participate in those trials, which isn't easy.

It takes a lot of courage to fly to Boston to meet physicians that at least at first, you don't know, to undergo lots of tests and to take a trial drug, which is a drug that will have side effects.

But you don't know if it's going to be effective.

And fortunately, that drug that we initiated called Lorna Farhana is effective as a treatment.

It's not a cure, but it gives the children an extra several years of life, which every day is a gift.

Kristi: And you've mentioned this is a genetic disease, but tell us how the symptoms of progeria and those with progeria kind of how those symptoms manifest themselves.

Dr. Gordon: Yeah, it's it's a great question because progeria is is a genetic disease and part of aging and cardiovascular disease has genetic components to it.

And those components are kind of a mystery, a black box.

What are the genes that influence aging in general?

Well, progeria is an exaggeration.

A disease caused by a mutation in a gene called Lamin, a that produces a toxic protein called progeria.

And children with progeria produce a lot of progeria in.

And their cells don't like it at all.

And it causes cell death and premature aging in those cells.

Kristi: So now I spoke with Kaley about how she truly has impacted perhaps groundbreaking advancements.

And of course, she's very humble about that.

We talked about the open heart surgery and the aortic stenosis surgery that she had.

Tell us more about the surgery.

Dr. Gordon: That's right.

It was she was amazing.

Her family is amazing.

And the surgery that was performed was first ever.

And look what happened here.

What what we've found is with this first treatment, the children with progeria, who previously without the treatment, were living on average to about 14 and a half years of age before they passed away from the heart disease, are living longer.

At least a couple of years, two and a half, three, perhaps even four years longer, which is a big percentage of their life.

I know it's not good enough, of course, for any of us, but as they are living longer into their twenties, even what we found surfaces as that as the the element that is critical to their survival in the end is this thing called aortic stenosis.

And it's the same thing that affects people that are aging with heart disease called atherosclerosis, a blood vessel, major artery.

The aorta that supplies the heart gets blocked and it puts a big stress on the heart.

And eventually the heart fails.

And as these children are getting into their older ages, we see that this is the pivotal component.

And so that's what we had to go after and really address for Caylee.

So we have this group of world experts in this ultra rare disease at Boston Children's Hospital, the cardiologists recognized what was happening, pulled in the cardiac surgeons from both Boston Children's and Brigham and Women's, an adult adult hospital that works with aging people and a pediatrics hospital to create to look at create a 3-D image of what was going on in the chest and chest cavity of Caylee and perform this groundbreaking surgery.

It is unbelievable what has happened.

And she is living a wonderful life.

Her her energy is amazing when we talked with her.

So we know there are so many needs as we go forward with you and the research and Dr. Gordon, we just want to say thank you for all that you've done to make a difference in this world.

Kristi: It has been a true honor to talk with you about this lifesaving mission that you are on to tirelessly work to extend the lives of those opposed area.

So thank you so much for all you're doing and for being here on Business Life 360.

Dr. Gordon: We have a long way to go and more treatments and the cure to find.

So thank you for having me.

I really appreciate it.

Kristi: And now where does one begin?

When newly diagnosed with cancer and what cancer care advancements can help on this journey?

Well, let's head out on location and talk with a radiation oncologist, a care coordinator and a patient to discuss new innovative healing care options for cancer patients.

We're here talking with Dr. Faucher about oncology and specifically radiation oncology.

And what are some of the trends in some of the cancers that we're seeing more of.

So first of all, Dr. Forquer thanks for being with me.

Dr. Forquer: Yeah.

Kristi: So we're talking about oncology.

This is what you do for a living in terms of radiation oncology.

What kinds of cancers are really prevalent that you're seeing right now?

Dr. Forquer: So we treat a lot of different cancers and radiation oncology, but some of the ones we see, most of our prostate cancer, breast cancer, lung cancer, head neck cancer, colorectal cancer, again, other less common cancers as well.

But that would make up typically our most common cancers that we treat.

Kristi: So when a patient is diagnosed with cancer, what is their kind of first plan of action?

I know recently I've had a friend diagnosed.

What is it that we say to her in terms of how do I develop this plan of action on this journey that I'm about to embark upon?

Dr. Forquer: Oftentimes, if it's a screening test or.

There's been some initial symptoms, patients may start with their primary care physician.

That's kind of an order.

And some of the initial tests.

Most typically then they would be seen by a medical oncologist with a doctor who specializes more in the delivery of chemotherapy.

And then that patient will usually be routed to other specialists based on what they would need for their specific cancer in the stage of their cancer.

Kristi: There's a full spectrum of services here at Promedica Flower, and the cancer center here is really, really wonderful for patients.

So thank you.

Dr. Forquer: Oh, yes.

I mean, it's definitely part of we look at it all together as part of the care of the patient.

And so I think patients feel that extra degree of comfort to know that it's not always just about the medicine and what's going to be delivered to them, but also about just the patient as a whole and taking care of them that way.

Kristi: Yes.

Thanks so much for being.

With us today, Doctor.

Dr. Forquer: No problem.

Good to talk to you.

I'm here with Debra Reese and she is in charge of the healing care center here for America Flower Cancer Center.

And we're really talking about a program.

Debra, thanks for being here.

Thank you.

A program that is really helping those who've been diagnosed with cancer.

Yes.

And how they can really navigate a journey and a pathway for themselves.

So give us an overview, if you would, about this healing care program that you are responsible for.

Debra Reis: Yes, the Healing Care program is a complimentary therapy program for our patients who are going through treatment, but it's also good for their support.

First, people as well.

And it really is to help a person cope through the cancer journey, through that experience.

So really looking and that can be very different for each person, same diagnosis, but really handling it in a different way.

So really looking at what is that person going through and how can we help complement the plan of care that that we are doing here at the Cancer Institute.

Kristi: So once a diagnosis is made, how is it that they can step into this program?

How are they referred to it, and how do they get involved in the program?

Debra Reis: They can get that referral from anybody.

They can even refer themselves.

So if they see the information are like, I want to do something like that, they can actually refer themself and that is perfectly fine.

Kristi: Give our viewers an understanding and our listeners as well as to some of the very specific offerings that you provide for patients who have cancer.

Debra Reis: Yes.

Yeah.

So we do provide therapies under the relaxation stress management umbrella, let's say.

So that might be breathwork.

So really helping a person cope with with maybe if they're claustrophobic and how we can help them breathe and be in control.

It might be imagery or healing touch, which is an energy therapy that we might do, and then we can integrate aroma therapy, we can integrate the ear seed therapy.

Those are all all modalities that we provide under the healing care program.

Kristi: Let's go talk to a patient.

Debra Reis: All right.

Thank you.

Kristi: Here we are in a healing care room for the patients.

And we are going to be talking more with Jenny Whitfield, a patient who has been receiving wonderful care following her cancer diagnosis.

Gerri, thanks for being with us today.

Jenny: Oh, my pleasure.

Kristi: We appreciate your input.

And want to hear a little bit more about your journey here and what brought you here.

Jenny: Last year, I was diagnosed with breast cancer and I was starting to feel really depressed and want to kind of give up.

And then Debra came into my life, and I'm.

Kristi: Glad that you're here with Debra.

And I know Debra, you've been really helpful in her care plan.

You know, she was diagnosed with cancer.

And so tell us a little more, if you would, about the seed that Jenny has had.

Debra Reis: So as Jenny mentioned, the seeds are what we call the ear seed therapy.

And they are tiny seeds that we put on the outside of the ear.

And they actually are on pressure points that correlate with areas of the body.

Jenny has asked for the digestive protocol, something to maybe help her with the nausea during this treatment time.

So this is a we do we're going to do five points or five seeds on each year.

So total of ten.

So you can see that these seeds are you know, they're they're like a hard seed and they're like a Band-Aid.

They just feel right off.

So first, I'm going to start with clear cleaning the ears with an alcohol wipe.

Okay.

Very good.

Can we just kind of let that dry for a moment?

So as we begin, I'm going to do a seed that's going to be here on the top of that ear, what we call the sun moon, or it's a relaxation point.

So just about everybody who's getting ear seed therapy will get this point.

The snack seed is going to go in the fold of the ear, and that correlates with the intestine.

Then I'm going to put two points right on the ear, and that correlates with the stomach.

And then this is going right on a point that correlates with her stomach.

And then this last one, number five, is going on a point right next to the opening of the ear that correlates with the endocrine system, which is hormones and things of that nature.

So that's another point that we are putting that.

Kristi: And Jenny, you said you really, really appreciate what these are doing for you.

Jenny: Oh, absolutely.

Absolutely.

Kristi: And then also then, Deb, you are really active in offering aroma therapy.

Debra Reis: For the aroma therapy.

Yes.

And all of our all of the tools that we provide, you know, have evidence behind them.

So we are using the aromas that are really going to be helpful.

They're not going to be contraindicated to her medications or anything she might be doing as far as her treatment plan.

So it's really meant to complement or enhance her treatment plan.

Kristi: So tell us more about how that lends to healing, especially with you, Jenny, and how you've been able to.

Really.

Kristi: Spend time in this room and.

Jenny: It's she teaches me techniques that I could take home with me.

She is introduce me to the the oils, which I have at my house now.

She has made up an inhaler for me to wear when I start feeling sick or nausea.

I just take that all in and it's like, gone.

Well, thank you very much.

Kristi: For being here with us and for sharing your story.

Thank you, John.

How inspiring to see and hear the incredible innovations and research advancements being made regarding the hundreds living with progeria, as well as learning about the supportive healing care options available to those diagnosed with and living with cancer.

And that's a wrap on this episode of Business Life 360.

I'm so glad you joined us to learn about those leading and innovating in the world of business and in life.

I'm Christi Kaye.

I'll see you on the next Business Life 360.

Announcer: Connect with Kristi Kay on LinkedIn at Christi Kay Hoffman and hear the business Life360 conversation on FM 91 on Thursday mornings to watch previous episodes and more.

Visit our website at W Dawgs B 360 and join Kristy for her new podcast business Life After Hours Business Life 360 with Kristi Kay is made possible by Promedica, a locally owned, nationally recognized not for profit health care network that has a strong commitment to clinical excellence, providing safe, high quality patient care and addressing social issues that impact health.

John B and Lillian E Neff, College of Business and Innovation at the University of Toledo.

Developing lifelong leaders for the world of business and by KeyBank, also by viewers like you.

Thank you.