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The official podcast of Shoemaker Films. Every week we share content related to digital marketing, video production, and brand building; and frequently meet with local creatives, entrepreneurs, and business owners for in-depth conversations. Get to know local heavy hitters and influencers in the Greater Philadelphia region while picking up some tactical advice and tips on starting and running a business, being productive, creating content, and everything in between.
Hi. This is Dane Shoemaker with the Shoemaker Films podcast. I'm here with Kate Hyland today of Cystic Fibrosis Foundation. Kate, how are you today?
Kate Hylan:Good. How are you?
Dane Shoemaker:Doing great. Thanks for, thanks for coming on here.
Kate Hylan:Thank you so much for having us.
Dane Shoemaker:Yeah. I you know, we we know each other through the chamber mainline Chamber of Commerce, Chamber Connect Group. So, you know, we've been planning this for a little while. So looking forward to learn a little bit more about cystic fibrosis, fibrosis foundation. I'm not too familiar with the disease itself.
Dane Shoemaker:Sure. So, you know, really wanna learn, you know, your role director of development. Correct?
Kate Hylan:Yep.
Dane Shoemaker:And what you do here. So why don't we just start with, you know, what is the mission of CFF?
Kate Hylan:Sure. The Cystic Fibrosis Foundation's mission is to find a cure for everyone living with CF. Yeah. We also wanna make their lives easier. If we can't find a cure, we wanna find we we do a lot of drug development to make their lives easier and keep them healthier as
Dane Shoemaker:well. Okay.
Kate Hylan:We also do a lot recently with lung transplants, helping people decide whether or not a lung transplant is the way to go for them. A lot of times, people who have CF, do end up getting a lung transplant, just because the disease, cystic fibrosis, is a disease that, a thick stick thick, sticky mucus builds up in your lungs and causes it to catch different bacterias and causes harm to your lungs. So, eventually, people with CF, will get chronic lung disease and that's usually what ends them. Okay.
Dane Shoemaker:So tell me about the disease itself, CF. Is it genetic? I mean, what are the symptoms? Like, what's the scope, you know, of it in the US?
Kate Hylan:Yep. CF is a genetic disease. Everybody's born with 2 CF genes. You get one from your mom and one from your dad. And if you have 2 healthy CF genes, you're totally fine.
Kate Hylan:If you have one mutated gene, that means you're a carrier, so that means you could pass it on to your children. And if you have 2 defective genes, if you get a defective gene from your mom and a defective gene from your dad, that means you have CF. It's a very rare disease, so there's only about 40,000 people in the United States that have it, which means that, it's also an orphan's disease, which means we don't get any federal funding from the government. So all of the money that we, raise, we raise ourselves, we don't get from the government. But to put it into perspective, you could fit every single person with CF into Citizens Bank Park where the Phillies play, and you would still have 5,000 empty seats.
Kate Hylan:And Okay. So it's just a very rare disease.
Dane Shoemaker:Very rare disease.
Kate Hylan:But that being said, the worst thing for someone with CF is also is another person with CF, so we could never put everybody with CF in Citizens Bank Park, because they pass germs to each other that are harmful. So it's also a very isolating disease too because the one person that knows what you're going through, you can't be with.
Dane Shoemaker:Oh, wow. That's that's incredible. So, yeah, I mean, so do do a lot of people have the one defective gene, or
Kate Hylan:There are over a 1000000 symptomless carriers.
Dane Shoemaker:Okay.
Kate Hylan:I am a carrier of the CF gene. Everyone is starting to know now because genetic testing in the United States for CF has become mandatory. So, when you are pregnant, you're tested to see if you are a carrier. And then if the mom is a carrier, the dad is tested, but they're only tested for the 30 most common mutations, and there's 1800 mutations. So, it's kind of a crapshoot of whether or not you'll actually find out.
Kate Hylan:But then as soon as the baby is born, heel prick is taken and the blood is tested to see if they do have CF. So they're tested after birth as well.
Dane Shoemaker:Okay. Wow. And so the the main you know, when people are diagnosed with CF, they have the 2 mutated genes. Are they, like, is are they automatically feeling symptoms down the road? Is it the lung issues that occur?
Dane Shoemaker:Like, what are what does that path look like for for patients?
Kate Hylan:So I'm not a doctor.
Dane Shoemaker:Yeah. Yeah.
Kate Hylan:But everyone has a different CF journey. Okay. Some people, excuse me, are born with CF and diagnosed right away, and then they're they go to the NICU and spend potentially their whole lives in the NICU and don't make it out of the hospital, depending on their lung formation, how thick and sticky the mucus is. CF is also a disease that affects the pancreas. So your body doesn't break down foods the way that it should.
Kate Hylan:So Yeah. Everyone with CF also has to take enzymes every time they eat to help break down those fatty foods. A lot of kids with, I shouldn't say a lot, some people with CF are born with a blockage in their bowels, so they have to have surgery right away. That's another symptom of knowing that you definitely have CF. Yeah.
Kate Hylan:But everyone's CF journey is very, very different. So it really depends on how much lung damage you have in your lifetime, whether or not your pancreas works. We have some people who have CF who have are asymptomatic, who don't know they have CF until they're an adult and something happens and they get tested and
Dane Shoemaker:Oh, wow.
Kate Hylan:It's like that. We have other people who, unfortunately, they're born and they spend their whole lives in the hospital and CF just wins, and they don't make it out of the hospital. So it's really depends on the person.
Dane Shoemaker:Yeah. Yeah. Would you say is it is it mostly affect children or is it really just the full gamut? It just depends on on each individual's
Kate Hylan:Yeah. I mean, when you're born with CF, you have it your whole life.
Dane Shoemaker:Right.
Kate Hylan:So Right. For the first time in the history of the disease, we have more adults living with CF than children, which is amazing because when I started, the average life expectancy was 27. And I started with the foundation 13 years yesterday.
Dane Shoemaker:Yeah. Congratulations. Thank you.
Kate Hylan:13 years ago yesterday was my first day, and we didn't have any drugs. Well, that's not true. We had drugs to, deal with the underlying symptoms of CF and battle those. But now we have drugs that actually are working to correct the defect in the gene. And the difference in the life span of people with CF now is incredible.
Kate Hylan:Yeah. We have people living into their fifties, sixties, and beyond. People are becoming grandparents that have CF. I said for the first time in the history of the disease, there are more adults living with CF than kids, which is incredible because it was never like that before. Back in the fifties when the foundation was found and, cystic fibrosis was discovered, people weren't even living to grade school.
Kate Hylan:There was just nothing to help it. And now through everyone's donations and the hard work of the CF Foundation and our scientists that we employ and working with different pharmaceutical companies, we've really made a huge impact. And, Trikafta was passed through the FDA in 2019, and that drug has made an amazing impact on the lives of people with CF who have the Delta f508 mutation, which is the common the most common mutation.
Dane Shoemaker:Got it. Okay. Yeah. So you, you mentioned that that the foundation was founded in 19 fifties. Tell me a little bit about the history, You know, how was it started?
Dane Shoemaker:Why was it started?
Kate Hylan:Sure. It was founded in 1955, actually, in Philadelphia, which is exciting. Our headquarters are now down in Bethesda, Maryland Okay. Right outside of Washington DC. It was founded by parents, parents who discovered this.
Kate Hylan:And, like I said before, because it is considered an orphan's disease, which means, there's not enough people for the government to care about it. All of the funding for medical research, we have to raise ourselves.
Dane Shoemaker:Sure.
Kate Hylan:So, that's what we do all day every day, call people and ask for money, ask for donations, encourage them to do fundraising themselves. But we also wanna raise awareness about the disease too. Not that many people know what CF is. I had no idea what cystic fibrosis was 14 years ago before my nephew was born. I got involved because I have a nephew who has CF.
Dane Shoemaker:Mhmm.
Kate Hylan:But it now is just raising awareness and funds to create a cure for everyone because we do have that amazing drug Trikafta, but it only helps about 90% of the population. So there's still that 10% that has rare mutations that we need to find drugs for them as well.
Dane Shoemaker:Sure. Sure. So in terms of the activities and the programs, can you tell me a little bit more about that? Like, what what CFF offers?
Kate Hylan:Yep. We do everything. Yeah. We have locally, we have 11 different walks. So it's free to walk.
Kate Hylan:You come, you form a team, you register. We our local chapter is the eastern half of Pennsylvania, South Jersey, and the whole state of Delaware. So we cover a pretty big region.
Dane Shoemaker:Yeah.
Kate Hylan:We have a climb event coming up in November at, Lincoln Financial. You climb up and down the steps through the lower bowl of where the Eagles play, which is not what I do, but a lot of people really like it. It's a really cool event, and, it's cool because you get to meet Swoop and see the Eagles pep band, I think they're called.
Dane Shoemaker:Okay. Yeah.
Kate Hylan:And, you just get to raise funds and awareness, and you get to see the link when no one's there. So that's pretty cool. We also have what we call themed events, which are finest young professionals events, which is really cool that usually happens in June. Okay. And we have a saver event this fall, which is a chef's tasting, which is really cool too.
Kate Hylan:That's at the Lucy, one of the Chesca Fete ballrooms down in the city. Okay. That's in October, climbs in November. We also have Paddle For A Cure, which is down the shore, Stone Harbor. We have that in the summer.
Kate Hylan:We also have, different type of online events. So we have an event called Rose Up, which is which was started by adults with CF 5 years ago. And it's really just passion fundraising, which is you pick whatever you wanna do and have an event and raise money that way on your own terms. So that's pretty cool too.
Dane Shoemaker:Yeah.
Kate Hylan:We have had cycling events in the past. We're taking a year off with that right now, but, we've done different things with cycle. It's really we really have something for everyone.
Dane Shoemaker:Yeah.
Kate Hylan:We have Cares events for the families that are they get to get to get together, for different dinners or happy hour type events. We have a young professionals group, tomorrow's leaders, and they get together for different things. They just did their Christmas in July event, which was getting books and different, inpatient toys for, DuPont, which is one of our care centers. Okay. So that's really great.
Kate Hylan:We really have something for everyone. We have advocacy events. We have grampians events with our grandparents. Yes. So we do it all.
Dane Shoemaker:Yeah. That's great. Yeah. And then just in the terms of, like, the services you provide to patients and those types of activities, the the fundraising helps fuel some of that. Tell me about, like, what are the the the things that you guys are doing for
Kate Hylan:Sure.
Dane Shoemaker:Yeah.
Kate Hylan:We have a program called Compass within the foundation that, 844 Compass is the number for it that if anybody has insurance issues, because we know that happens a lot with medical insurance and people not wanting to cover different things that are needed.
Dane Shoemaker:Yeah.
Kate Hylan:So Compass takes care of that and helps, all of them. We have a care center network. Locally, we have 5 care centers within our region. So we, help them with supplies and we work with them on different things and ask how we can help them. We have the CARES events, which are CARES takes on different groups of people and brings them together.
Kate Hylan:So there's parents' dinners, and there's siblings' dinners, and, grandparents' dinners, different things like that.
Dane Shoemaker:Yeah.
Kate Hylan:We do a lot of different advocacy things too. There's a teen advocacy day and, a regular advocacy day where, they do march on the hill, which everybody goes down to DC and talks to their senators about trying to get more money for the CF Foundation now that it's becoming a bigger disease because people are living longer and different things are happening with that too.
Dane Shoemaker:Yeah. Oh, that's great. And so a lot of advocacy support Yeah. For families, for their patients, lobbying a little bit. And you said you employ scientists too?
Dane Shoemaker:Do you are you act?
Kate Hylan:Yeah. So the foundation has a lab up in Massachusetts
Dane Shoemaker:Okay.
Kate Hylan:That we employ all those scientists, and they're
Dane Shoemaker:Wow.
Kate Hylan:Doing everything. So, I don't know how much you know about developing drugs, but
Dane Shoemaker:Not really.
Kate Hylan:For I'm not a scientist either. So from concept to passing through the FDA, it costs $1,000,000,000 for a drug. So that's why we have to keep continuing to fundraise because we need that money to try and get all of these different, trials passed through the FDA and drugs. So, right now, we have a huge pipeline of drugs for different things, different aspects, new, inhaled drugs that help with lung function, new enzymes that can help as well. There's all different drugs.
Kate Hylan:We're on, the second generation of Trikafta is Okay. Being tested right now. The first generation had some liver function issues, like the side effects. It also had some side effects with mental health on younger people. So they're trying to correct that too because the drug really is a game changer.
Dane Shoemaker:Yeah. That's great. What about any, like, success stories that you may be from patients or anything like that you wanna share? Anything that, you know, hits home? Or
Kate Hylan:Yeah. I mean, I can I can't really speak to that many success stories of our patients? Trikafta has been huge. I can talk about my nephew a little bit. I said I have a nephew who is 14 who has CF.
Dane Shoemaker:Tell me about that. Tell me about him. Yeah.
Kate Hylan:Started Trikafta the day the world shut down. So Friday 13th, which is Friday 13th is today.
Dane Shoemaker:That's right.
Kate Hylan:Yeah. But that was Friday 13th March in 2020. He started Trikafta the day the world shut down.
Dane Shoemaker:Yeah.
Kate Hylan:So
Dane Shoemaker:So how old is he now? 14?
Kate Hylan:He's 14 now.
Dane Shoemaker:So Okay. So 2010, he was born Yep. And he is living with CF
Kate Hylan:Yep.
Dane Shoemaker:For 9 toward 10 years or so. Okay. He was
Kate Hylan:in the hospital probably for what they call tune ups, which, happens a lot. It's just a 2 week stay for inpatient for CF patients where they get different IVs, and it helps their lung function. They do breathing treatments. It's just more concentrated and more helpful that CF patients do that. So since he started Trikafta, he has gained £30.
Kate Hylan:He has grown 5 inches.
Dane Shoemaker:Wow.
Kate Hylan:And he was doing 4 breathing treatments a day for 30 minutes each and taking 760 pills a month Wow. Which is for a 10 year old, 12 year old, it's crazy. That's so but that's all he ever knew.
Dane Shoemaker:Yeah.
Kate Hylan:And now he takes Trikafta in the morning and Trikafta at night. He does not have to do any breathing treatments, and he just has to take enzymes when he's eating fatty foods. And he hasn't been in the hospital. We're gonna knock on wood there.
Dane Shoemaker:Oh, that's that's absolutely incredible.
Kate Hylan:Yeah. It's Yeah. The drug is really a game changer for people that have the specific mutation, but we need to get that game changer drug for everyone. So that's why our mission is still so important.
Dane Shoemaker:Yeah. Yeah. Is that is that a challenge to get that out? I mean, it's out in the market now.
Kate Hylan:It is. It is. Some insurances don't cover it.
Dane Shoemaker:Yeah.
Kate Hylan:So it's really expensive to have drugs that insurance don't cover. So, my sister pretty much meets her insurance deductible on the 1st day of the year every year. Yeah. But yeah. No.
Kate Hylan:It's it's really a game changer, and the foundation is doing amazing things to try and get other drugs for the last 10%.
Dane Shoemaker:Sure. Yep. So, in terms of your role director of development, are you involved a lot of those fundraising activities, organizing those events, or what else, you know, what what are you doing here?
Kate Hylan:Yeah. So my role consists of working on the peer to peer program, which is our walks and, any type of endurance event, which is climb and, cycle. And we used to have a hike event, paddle, all of those. So I work I have worked on every walk that we've had. When I started, we had 16 walks.
Kate Hylan:Some of them have combined
Dane Shoemaker:Yeah.
Kate Hylan:Over the years. But I work on our walk program. I'm also the care center liaison, so I work directly with the care centers, the 5 different care centers. We have one at Jefferson. So Jefferson, Penn, and ChristianaCare are our main adult care centers, and then CHOP and DuPont, New Moores are youth care centers.
Kate Hylan:So all of our patients go to those care centers in the area, and I work with those doctors. I'm also I've also worked on different things over the years, different events. There's not really a whole lot I haven't done in the past 13 years. Yeah. So mainly I work on our walk program and help with that.
Dane Shoemaker:That's great. So, you know, this will this episode will probably come out end of September.
Kate Hylan:Okay.
Dane Shoemaker:What, what do you have coming up this fall, you know, that people should be aware of?
Kate Hylan:Sure. We have, our event Savor at the Lucy on October 21st.
Dane Shoemaker:Okay.
Kate Hylan:That is a chef's tasting event. There are opportunities for sponsorships. You can buy a ticket. The food is delicious. Yeah.
Kate Hylan:It is it comes with a, auction there as well, so you'll have different items to bid on. We'll have a bid for a cure speaker, so that'll be someone with CF will be there to tell their story. And then bid for a cure is a $100 tax deductible donation. That's just awesome to give at that event. Sure.
Kate Hylan:And then October 24th, we have Rose Up, which is our, event started by CF adults that is, completely online. You do whatever you want as the rose up. You can do it on the 24th. You can do it leading up to 24th. It's the 5th year for that event.
Kate Hylan:So, nationally, we have a $555,000 goal. So we're trying to reach that as well. And then November 9th is our climb event, and that takes place at the link. You can if there's a timed climb and a fun climb, so you can do it as quickly as you want with the timed climb to try and beat everyone else's climbs. Yeah.
Dane Shoemaker:Yeah. Yeah.
Kate Hylan:Or you can do it as a fun climb. There's also an aspect of that where you can come and just cheer for the different people participating in that. So that's really cool as well. You can find information about those are the last three events of the year, and then our, spring events are when we start the walks. So we have the walks in the spring, the, registration websites open for them in November.
Dane Shoemaker:Yep. Okay.
Kate Hylan:And you can find information on all of that atcff.org. And then if you look at the local if you look for a find a chapter and type in your zip code or Newtown Square, that's where we're located. It'll take you to our home page, and that'll give you all the other information about how to contact us and get in touch with
Dane Shoemaker:us. Great. Great. And you're national. You have chapters all over the country?
Dane Shoemaker:Or Yep.
Kate Hylan:We have chapters everywhere. The San Diego chapter takes care of of Hawaii, and the Washington chapter takes care of Alaska. But in the continental United States, we have chapters all over. So wherever you are, you can find a chapter close to
Dane Shoemaker:you. That's great. Right. Yeah. Anything else you wanna share, Kate?
Kate Hylan:I don't think so. Thank you so much for hosting us and giving us a platform to talk more about
Dane Shoemaker:Of course. I mean, it's it's incredible work that you do and, you know, the the organization. It's a great mission and, you know, congrats to 13 years as well. I mean, it's just a
Kate Hylan:Lucky number 13.
Dane Shoemaker:This is
Kate Hylan:our year. If anybody wants to donate $1,000,000, give me a call.
Dane Shoemaker:Absolutely. Okay. Thanks so much.
Kate Hylan:Thank you.
Dane Shoemaker:Thanks for listening today. Shoemaker Lab is an original production by Shoemaker Films LLC. If you enjoyed today's content, please consider subscribing on YouTube, Spotify, Apple Podcasts, and wherever you get your content. Follow us on Instagram at shoemaker.films. And if you're a business that's either interested in our video production services or would like to be a guest on the show, get in touch by using the contact form on our website, shoemakerfilms.com.