October 1, 2024 • 23 mins
What does it take to find a cure for a rare disease like Cystic Fibrosis? In this episode, we sit down with Kate Hylan, Director of Development for the Cystic Fibrosis Foundation, to discuss the foundation's mission and the challenges of raising awareness for this orphan disease. We dive into the genetic nature of CF, its impact on patients, and the groundbreaking work being done to improve their quality of life. Kate also shares personal stories and highlights the importance of advocacy and fundraising. Tune in to learn more about how the CFF is fighting to make a difference!
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Dane Shoemaker (00:03):
Hi. This is Dane Shoemaker with the Shoemaker
Films podcast. I'm here withKate Hyland today of Cystic
Fibrosis Foundation. Kate, howare you today?
Kate Hylan (00:10):
Good. How are you?
Dane Shoemaker (00:11):
Doing great. Thanks for, thanks for coming on
here.
Kate Hylan (00:14):
Thank you so much for having us.
Dane Shoemaker (00:16):
Yeah. I you know, we we know each other
through the chamber mainlineChamber of Commerce, Chamber
Connect Group. So, you know,we've been planning this for a
little while. So looking forwardto learn a little bit more about
cystic fibrosis, fibrosisfoundation. I'm not too familiar
with the disease itself.
Sure. So, you know, really wannalearn, you know, your role
(00:39):
director of development.Correct?
Kate Hylan (00:41):
Yep.
Dane Shoemaker (00:41):
And what you do here. So why don't we just start
with, you know, what is themission of CFF?
Kate Hylan (00:47):
Sure. The Cystic Fibrosis Foundation's mission is
to find a cure for everyoneliving 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 ofdrug development to make their
lives easier and keep themhealthier as
Dane Shoemaker (01:06):
well. Okay.
Kate Hylan (01:07):
We also do a lot recently with lung transplants,
helping people decide whether ornot 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, justbecause the disease, cystic
fibrosis, is a disease that, athick stick thick, sticky mucus
(01:32):
builds up in your lungs andcauses it to catch different
bacterias and causes harm toyour lungs. So, eventually,
people with CF, will get chroniclung disease and that's usually
what ends them. Okay.
Dane Shoemaker (01:49):
So tell me about the disease itself, CF. Is it
genetic? I mean, what are thesymptoms? Like, what's the
scope, you know, of it in theUS?
Kate Hylan (01:57):
Yep. CF is a genetic disease. Everybody's born with 2
CF genes. You get one from yourmom and one from your dad. And
if you have 2 healthy CF genes,you're totally fine.
If you have one mutated gene,that means you're a carrier, so
that means you could pass it onto your children. And if you
(02:17):
have 2 defective genes, if youget a defective gene from your
mom and a defective gene fromyour dad, that means you have
CF. It's a very rare disease, sothere's only about 40,000 people
in the United States that haveit, which means that, it's also
an orphan's disease, which meanswe don't get any federal funding
from the government. So all ofthe money that we, raise, we
(02:41):
raise ourselves, we don't getfrom the government. But to put
it into perspective, you couldfit every single person with CF
into Citizens Bank Park wherethe Phillies play, and you would
still have 5,000 empty seats.
And Okay. So it's just a veryrare disease.
Dane Shoemaker (02:57):
Very rare disease.
Kate Hylan (02:58):
But that being said, the worst thing for someone with
CF is also is another personwith CF, so we could never put
everybody with CF in CitizensBank Park, because they pass
germs to each other that areharmful. So it's also a very
isolating disease too becausethe one person that knows what
you're going through, you can'tbe with.
Dane Shoemaker (03:18):
Oh, wow. That's that's incredible. So, yeah, I
mean, so do do a lot of peoplehave the one defective gene, or
Kate Hylan (03:28):
There are over a 1000000 symptomless carriers.
Dane Shoemaker (03:31):
Okay.
Kate Hylan (03:32):
I am a carrier of the CF gene. Everyone is
starting to know now becausegenetic testing in the United
States for CF has becomemandatory. So, when you are
pregnant, you're tested to seeif you are a carrier. And then
if the mom is a carrier, the dadis tested, but they're only
(03:53):
tested for the 30 most commonmutations, and there's 1800
mutations. So, it's kind of acrapshoot of whether or not
you'll actually find out.
But then as soon as the baby isborn, heel prick is taken and
the blood is tested to see ifthey do have CF. So they're
(04:13):
tested after birth as well.
Dane Shoemaker (04:16):
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 theyautomatically feeling symptoms
down the road? Is it the lungissues that occur?
Like, what are what does thatpath look like for for patients?
Kate Hylan (04:35):
So I'm not a doctor.
Dane Shoemaker (04:37):
Yeah. Yeah.
Kate Hylan (04:38):
But everyone has a different CF journey. Okay. Some
people, excuse me, are born withCF and diagnosed right away, and
then they're they go to the NICUand spend potentially their
whole lives in the NICU anddon't make it out of the
hospital, depending on theirlung formation, how thick and
(05:02):
sticky the mucus is. CF is alsoa disease that affects the
pancreas. So your body doesn'tbreak down foods the way that it
should.
So Yeah. Everyone with CF alsohas to take enzymes every time
they eat to help break downthose fatty foods. A lot of kids
(05:23):
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 anothersymptom of knowing that you
definitely have CF. Yeah.
But everyone's CF journey isvery, very different. So it
really depends on how much lungdamage you have in your
(05:49):
lifetime, whether or not yourpancreas works. We have some
people who have CF who have areasymptomatic, who don't know
they have CF until they're anadult and something happens and
they get tested and
Dane Shoemaker (06:03):
Oh, wow.
Kate Hylan (06:03):
It's like that. We have other people who,
unfortunately, they're born andthey spend their whole lives in
the hospital and CF just wins,and they don't make it out of
the hospital. So it's reallydepends on the person.
Dane Shoemaker (06:20):
Yeah. Yeah. Would you say is it is it mostly
affect children or is it reallyjust the full gamut? It just
depends on on each individual's
Kate Hylan (06:31):
Yeah. I mean, when you're born with CF, you have it
your whole life.
Dane Shoemaker (06:35):
Right.
Kate Hylan (06:35):
So Right. For the first time in the history of the
disease, we have more adultsliving with CF than children,
which is amazing because when Istarted, the average life
expectancy was 27. And I startedwith the foundation 13 years
yesterday.
Dane Shoemaker (06:52):
Yeah. Congratulations. Thank you.
Kate Hylan (06:54):
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 underlyingsymptoms of CF and battle those.
But now we have drugs thatactually are working to correct
the defect in the gene. And thedifference in the life span of
(07:19):
people with CF now isincredible.
Yeah. We have people living intotheir fifties, sixties, and
beyond. People are becominggrandparents that have CF. I
said for the first time in thehistory of the disease, there
are more adults living with CFthan kids, which is incredible
because it was never like thatbefore. Back in the fifties when
(07:40):
the foundation was found and,cystic fibrosis was discovered,
people weren't even living tograde school.
There was just nothing to helpit. And now through everyone's
donations and the hard work ofthe CF Foundation and our
scientists that we employ andworking with different
(08:00):
pharmaceutical companies, we'vereally made a huge impact. And,
Trikafta was passed through theFDA in 2019, and that drug has
made an amazing impact on thelives of people with CF who have
the Delta f508 mutation, whichis the common the most common
(08:21):
mutation.
Dane Shoemaker (08:22):
Got it. Okay. Yeah. So you, you mentioned that
that the foundation was foundedin 19 fifties. Tell me a little
bit about the history, You know,how was it started?
Why was it started?
Kate Hylan (08:32):
Sure. It was founded in 1955, actually, in
Philadelphia, which is exciting.Our headquarters are now down in
Bethesda, Maryland Okay. Rightoutside of Washington DC. It was
founded by parents, parents whodiscovered this.
And, like I said before, becauseit is considered an orphan's
disease, which means, there'snot enough people for the
(08:55):
government to care about it. Allof the funding for medical
research, we have to raiseourselves.
Dane Shoemaker (09:04):
Sure.
Kate Hylan (09:04):
So, that's what we do all day every day, call
people and ask for money, askfor donations, encourage them to
do fundraising themselves. Butwe also wanna raise awareness
about the disease too. Not thatmany people know what CF is. I
had no idea what cystic fibrosiswas 14 years ago before my
(09:25):
nephew was born. I got involvedbecause I have a nephew who has
CF.
Dane Shoemaker (09:29):
Mhmm.
Kate Hylan (09:31):
But it now is just raising awareness and funds to
create a cure for everyonebecause we do have that amazing
drug Trikafta, but it only helpsabout 90% of the population. So
there's still that 10% that hasrare mutations that we need to
find drugs for them as well.
Dane Shoemaker (09:52):
Sure. Sure. So in terms of the activities and
the programs, can you tell me alittle bit more about that?
Like, what what CFF offers?
Kate Hylan (10:00):
Yep. We do everything. Yeah. We have
locally, we have 11 differentwalks. So it's free to walk.
You come, you form a team, youregister. We our local chapter
is the eastern half ofPennsylvania, South Jersey, and
the whole state of Delaware. Sowe cover a pretty big region.
Dane Shoemaker (10:23):
Yeah.
Kate Hylan (10:25):
We have a climb event coming up in November at,
Lincoln Financial. You climb upand down the steps through the
lower bowl of where the Eaglesplay, which is not what I do,
but a lot of people really likeit. It's a really cool event,
and, it's cool because you getto meet Swoop and see the Eagles
(10:47):
pep band, I think they'recalled.
Dane Shoemaker (10:49):
Okay. Yeah.
Kate Hylan (10:50):
And, you just get to raise funds and awareness, and
you get to see the link when noone's there. So that's pretty
cool. We also have what we callthemed events, which are finest
young professionals events,which is really cool that
usually happens in June. Okay.And we have a saver event this
(11:10):
fall, which is a chef's tasting,which is really cool too.
That's at the Lucy, one of theChesca Fete ballrooms down in
the city. Okay. That's inOctober, climbs in November. We
also have Paddle For A Cure,which is down the shore, Stone
Harbor. We have that in thesummer.
(11:33):
We also have, different type ofonline events. So we have an
event called Rose Up, which iswhich was started by adults with
CF 5 years ago. And it's reallyjust passion fundraising, which
is you pick whatever you wannado and have an event and raise
(11:53):
money that way on your ownterms. So that's pretty cool
too.
Dane Shoemaker (11:57):
Yeah.
Kate Hylan (11:58):
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 wereally have something for
everyone.
Dane Shoemaker (12:08):
Yeah.
Kate Hylan (12:09):
We have Cares events for the families that are they
get to get to get together, fordifferent dinners or happy hour
type events. We have a youngprofessionals group, tomorrow's
leaders, and they get togetherfor different things. They just
did their Christmas in Julyevent, which was getting books
(12:30):
and different, inpatient toysfor, DuPont, which is one of our
care centers. Okay. So that'sreally great.
We really have something foreveryone. We have advocacy
events. We have grampians eventswith our grandparents. Yes. So
we do it all.
Dane Shoemaker (12:48):
Yeah. That's great. Yeah. And then just in
the terms of, like, the servicesyou provide to patients and
those types of activities, thethe fundraising helps fuel some
of that. Tell me about, like,what are the the the things that
you guys are doing for
Kate Hylan (13:01):
Sure.
Dane Shoemaker (13:02):
Yeah.
Kate Hylan (13:03):
We have a program called Compass within the
foundation that, 844 Compass isthe number for it that if
anybody has insurance issues,because we know that happens a
lot with medical insurance andpeople not wanting to cover
different things that areneeded.
Dane Shoemaker (13:20):
Yeah.
Kate Hylan (13:21):
So Compass takes care of that and helps, all of
them. We have a care centernetwork. Locally, we have 5 care
centers within our region. Sowe, help them with supplies and
we work with them on differentthings and ask how we can help
them. We have the CARES events,which are CARES takes on
(13:48):
different groups of people andbrings them together.
So there's parents' dinners, andthere's siblings' dinners, and,
grandparents' dinners, differentthings like that.
Dane Shoemaker (13:59):
Yeah.
Kate Hylan (14:00):
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, whicheverybody goes down to DC and
talks to their senators abouttrying to get more money for the
CF Foundation now that it'sbecoming a bigger disease
(14:20):
because people are living longerand different things are
happening with that too.
Dane Shoemaker (14:24):
Yeah. Oh, that's great. And so a lot of advocacy
support Yeah. For families, fortheir patients, lobbying a
little bit. And you said youemploy scientists too?
Do you are you act?
Kate Hylan (14:33):
Yeah. So the foundation has a lab up in
Massachusetts
Dane Shoemaker (14:37):
Okay.
Kate Hylan (14:38):
That we employ all those scientists, and they're
Dane Shoemaker (14:41):
Wow.
Kate Hylan (14:41):
Doing everything. So, I don't know how much you
know about developing drugs, but
Dane Shoemaker (14:46):
Not really.
Kate Hylan (14:47):
For I'm not a scientist either. So from
concept to passing through theFDA, it costs $1,000,000,000 for
a drug. So that's why we have tokeep continuing to fundraise
because we need that money totry and get all of these
different, trials passed throughthe FDA and drugs. So, right
(15:10):
now, we have a huge pipeline ofdrugs for different things,
different aspects, new, inhaleddrugs that help with lung
function, new enzymes that canhelp as well. There's all
different drugs.
We're on, the second generationof Trikafta is Okay. Being
(15:30):
tested right now. The firstgeneration had some liver
function issues, like the sideeffects. It also had some side
effects with mental health onyounger people. So they're
trying to correct that toobecause the drug really is a
game changer.
Dane Shoemaker (15:49):
Yeah. That's great. What about any, like,
success stories that you may befrom patients or anything like
that you wanna share? Anythingthat, you know, hits home? Or
Kate Hylan (15:59):
Yeah. I mean, I can I can't really speak to that
many success stories of ourpatients? Trikafta has been
huge. I can talk about my nephewa little bit. I said I have a
nephew who is 14 who has CF.
Dane Shoemaker (16:13):
Tell me about that. Tell me about him. Yeah.
Kate Hylan (16:15):
Started Trikafta the day the world shut down. So
Friday 13th, which is Friday13th is today.
Dane Shoemaker (16:22):
That's right.
Kate Hylan (16:23):
Yeah. But that was Friday 13th March in 2020. He
started Trikafta the day theworld shut down.
Dane Shoemaker (16:30):
Yeah.
Kate Hylan (16:31):
So
Dane Shoemaker (16:32):
So how old is he now? 14?
Kate Hylan (16:33):
He's 14 now.
Dane Shoemaker (16:34):
So Okay. So 2010, he was born Yep. And he is
living with CF
Kate Hylan (16:39):
Yep.
Dane Shoemaker (16:40):
For 9 toward 10 years or so. Okay. He was
Kate Hylan (16:43):
in the hospital probably for what they call tune
ups, which, happens a lot. It'sjust a 2 week stay for inpatient
for CF patients where they getdifferent IVs, and it helps
their lung function. They dobreathing treatments. It's just
more concentrated and morehelpful that CF patients do
that. So since he startedTrikafta, he has gained £30.
(17:08):
He has grown 5 inches.
Dane Shoemaker (17:12):
Wow.
Kate Hylan (17:12):
And he was doing 4 breathing treatments a day for
30 minutes each and taking 760pills a month Wow. Which is for
a 10 year old, 12 year old, it'scrazy. That's so but that's all
he ever knew.
Dane Shoemaker (17:30):
Yeah.
Kate Hylan (17:30):
And now he takes Trikafta in the morning and
Trikafta at night. He does nothave to do any breathing
treatments, and he just has totake enzymes when he's eating
fatty foods. And he hasn't beenin the hospital. We're gonna
knock on wood there.
Dane Shoemaker (17:45):
Oh, that's that's absolutely incredible.
Kate Hylan (17:47):
Yeah. It's Yeah. The drug is really a game changer
for people that have thespecific mutation, but we need
to get that game changer drugfor everyone. So that's why our
mission is still so important.
Dane Shoemaker (18:01):
Yeah. Yeah. Is that is that a challenge to get
that out? I mean, it's out inthe market now.
Kate Hylan (18:06):
It is. It is. Some insurances don't cover it.
Dane Shoemaker (18:09):
Yeah.
Kate Hylan (18:09):
So it's really expensive to have drugs that
insurance don't cover. So, mysister pretty much meets her
insurance deductible on the 1stday of the year every year.
Yeah. But yeah. No.
It's it's really a game changer,and the foundation is doing
amazing things to try and getother drugs for the last 10%.
Dane Shoemaker (18:32):
Sure. Yep. So, in terms of your role director
of development, are you involveda lot of those fundraising
activities, organizing thoseevents, or what else, you know,
what what are you doing here?
Kate Hylan (18:43):
Yeah. So my role consists of working on the peer
to peer program, which is ourwalks and, any type of endurance
event, which is climb and,cycle. And we used to have a
hike event, paddle, all ofthose. So I work I have worked
on every walk that we've had.When I started, we had 16 walks.
(19:06):
Some of them have combined
Dane Shoemaker (19:07):
Yeah.
Kate Hylan (19:07):
Over the years. But I work on our walk program. I'm
also the care center liaison, soI work directly with the care
centers, the 5 different carecenters. We have one at
Jefferson. So Jefferson, Penn,and ChristianaCare are our main
adult care centers, and thenCHOP and DuPont, New Moores are
(19:28):
youth care centers.
So all of our patients go tothose 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'tdone in the past 13 years. Yeah.
So mainly I work on our walkprogram and help with that.
Dane Shoemaker (19:51):
That's great. So, you know, this will this
episode will probably come outend of September.
Kate Hylan (19:58):
Okay.
Dane Shoemaker (19:58):
What, what do you have coming up this fall,
you know, that people should beaware of?
Kate Hylan (20:03):
Sure. We have, our event Savor at the Lucy on
October 21st.
Dane Shoemaker (20:09):
Okay.
Kate Hylan (20:10):
That is a chef's tasting event. There are
opportunities for sponsorships.You can buy a ticket. The food
is delicious. Yeah.
It is it comes with a, auctionthere as well, so you'll have
different items to bid on. We'llhave a bid for a cure speaker,
(20:32):
so that'll be someone with CFwill be there to tell their
story. And then bid for a cureis a $100 tax deductible
donation. That's just awesome togive at that event. Sure.
And then October 24th, we haveRose Up, which is our, event
(20:54):
started by CF adults that is,completely online. You do
whatever you want as the roseup. You can do it on the 24th.
You can do it leading up to24th. It's the 5th year for that
event.
So, nationally, we have a$555,000 goal. So we're trying
to reach that as well. And thenNovember 9th is our climb event,
(21:20):
and that takes place at thelink. You can if there's a timed
climb and a fun climb, so youcan do it as quickly as you want
with the timed climb to try andbeat everyone else's climbs.
Yeah.
Dane Shoemaker (21:36):
Yeah. Yeah.
Kate Hylan (21:36):
Or you can do it as a fun climb. There's also an
aspect of that where you cancome and just cheer for the
different people participatingin that. So that's really cool
as well. You can findinformation about those are the
last three events of the year,and then our, spring events are
when we start the walks. So wehave the walks in the spring,
(21:56):
the, registration websites openfor them in November.
Dane Shoemaker (22:03):
Yep. Okay.
Kate Hylan (22:05):
And you can find information on all of that
atcff.org. And then if you lookat the local if you look for a
find a chapter and type in yourzip code or Newtown Square,
that's where we're located.It'll take you to our home page,
and that'll give you all theother information about how to
contact us and get in touch with
Dane Shoemaker (22:24):
us. Great. Great. And you're national. You
have chapters all over thecountry?
Or Yep.
Kate Hylan (22:28):
We have chapters everywhere. The San Diego
chapter takes care of of Hawaii,and the Washington chapter takes
care of Alaska. But in thecontinental United States, we
have chapters all over. Sowherever you are, you can find a
chapter close to
Dane Shoemaker (22:45):
you. That's great. Right. Yeah. Anything
else you wanna share, Kate?
Kate Hylan (22:50):
I don't think so. Thank you so much for hosting us
and giving us a platform to talkmore about
Dane Shoemaker (22:57):
Of course. I mean, it's it's incredible work
that you do and, you know, thethe organization. It's a great
mission and, you know, congratsto 13 years as well. I mean,
it's just a
Kate Hylan (23:05):
Lucky number 13.
Dane Shoemaker (23:07):
This is
Kate Hylan (23:07):
our year. If anybody wants to donate $1,000,000, give
me a call.
Dane Shoemaker (23:11):
Absolutely. Okay. Thanks so much.
Kate Hylan (23:13):
Thank you.
Dane Shoemaker (23:16):
Thanks for listening today. Shoemaker Lab
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(23:39):
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Hi. This is Dane Shoemaker with the Shoemaker
Films podcast. I'm here withKate Hyland today of Cystic
Fibrosis Foundation. Kate, howare you today?
Kate Hylan (00:10):
Good. How are you?
Dane Shoemaker (00:11):
Doing great. Thanks for, thanks for coming on
here.
Kate Hylan (00:14):
Thank you so much for having us.
Dane Shoemaker (00:16):
Yeah. I you know, we we know each other
through the chamber mainlineChamber of Commerce, Chamber
Connect Group. So, you know,we've been planning this for a
little while. So looking forwardto learn a little bit more about
cystic fibrosis, fibrosisfoundation. I'm not too familiar
with the disease itself.
Sure. So, you know, really wannalearn, you know, your role
(00:39):
director of development.Correct?
Kate Hylan (00:41):
Yep.
Dane Shoemaker (00:41):
And what you do here. So why don't we just start
with, you know, what is themission of CFF?
Kate Hylan (00:47):
Sure. The Cystic Fibrosis Foundation's mission is
to find a cure for everyoneliving 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 ofdrug development to make their
lives easier and keep themhealthier as
Dane Shoemaker (01:06):
well. Okay.
Kate Hylan (01:07):
We also do a lot recently with lung transplants,
helping people decide whether ornot 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, justbecause the disease, cystic
fibrosis, is a disease that, athick stick thick, sticky mucus
(01:32):
builds up in your lungs andcauses it to catch different
bacterias and causes harm toyour lungs. So, eventually,
people with CF, will get chroniclung disease and that's usually
what ends them. Okay.
Dane Shoemaker (01:49):
So tell me about the disease itself, CF. Is it
genetic? I mean, what are thesymptoms? Like, what's the
scope, you know, of it in theUS?
Kate Hylan (01:57):
Yep. CF is a genetic disease. Everybody's born with 2
CF genes. You get one from yourmom and one from your dad. And
if you have 2 healthy CF genes,you're totally fine.
If you have one mutated gene,that means you're a carrier, so
that means you could pass it onto your children. And if you
(02:17):
have 2 defective genes, if youget a defective gene from your
mom and a defective gene fromyour dad, that means you have
CF. It's a very rare disease, sothere's only about 40,000 people
in the United States that haveit, which means that, it's also
an orphan's disease, which meanswe don't get any federal funding
from the government. So all ofthe money that we, raise, we
(02:41):
raise ourselves, we don't getfrom the government. But to put
it into perspective, you couldfit every single person with CF
into Citizens Bank Park wherethe Phillies play, and you would
still have 5,000 empty seats.
And Okay. So it's just a veryrare disease.
Dane Shoemaker (02:57):
Very rare disease.
Kate Hylan (02:58):
But that being said, the worst thing for someone with
CF is also is another personwith CF, so we could never put
everybody with CF in CitizensBank Park, because they pass
germs to each other that areharmful. So it's also a very
isolating disease too becausethe one person that knows what
you're going through, you can'tbe with.
Dane Shoemaker (03:18):
Oh, wow. That's that's incredible. So, yeah, I
mean, so do do a lot of peoplehave the one defective gene, or
Kate Hylan (03:28):
There are over a 1000000 symptomless carriers.
Dane Shoemaker (03:31):
Okay.
Kate Hylan (03:32):
I am a carrier of the CF gene. Everyone is
starting to know now becausegenetic testing in the United
States for CF has becomemandatory. So, when you are
pregnant, you're tested to seeif you are a carrier. And then
if the mom is a carrier, the dadis tested, but they're only
(03:53):
tested for the 30 most commonmutations, and there's 1800
mutations. So, it's kind of acrapshoot of whether or not
you'll actually find out.
But then as soon as the baby isborn, heel prick is taken and
the blood is tested to see ifthey do have CF. So they're
(04:13):
tested after birth as well.
Dane Shoemaker (04:16):
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 theyautomatically feeling symptoms
down the road? Is it the lungissues that occur?
Like, what are what does thatpath look like for for patients?
Kate Hylan (04:35):
So I'm not a doctor.
Dane Shoemaker (04:37):
Yeah. Yeah.
Kate Hylan (04:38):
But everyone has a different CF journey. Okay. Some
people, excuse me, are born withCF and diagnosed right away, and
then they're they go to the NICUand spend potentially their
whole lives in the NICU anddon't make it out of the
hospital, depending on theirlung formation, how thick and
(05:02):
sticky the mucus is. CF is alsoa disease that affects the
pancreas. So your body doesn'tbreak down foods the way that it
should.
So Yeah. Everyone with CF alsohas to take enzymes every time
they eat to help break downthose fatty foods. A lot of kids
(05:23):
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 anothersymptom of knowing that you
definitely have CF. Yeah.
But everyone's CF journey isvery, very different. So it
really depends on how much lungdamage you have in your
(05:49):
lifetime, whether or not yourpancreas works. We have some
people who have CF who have areasymptomatic, who don't know
they have CF until they're anadult and something happens and
they get tested and
Dane Shoemaker (06:03):
Oh, wow.
Kate Hylan (06:03):
It's like that. We have other people who,
unfortunately, they're born andthey spend their whole lives in
the hospital and CF just wins,and they don't make it out of
the hospital. So it's reallydepends on the person.
Dane Shoemaker (06:20):
Yeah. Yeah. Would you say is it is it mostly
affect children or is it reallyjust the full gamut? It just
depends on on each individual's
Kate Hylan (06:31):
Yeah. I mean, when you're born with CF, you have it
your whole life.
Dane Shoemaker (06:35):
Right.
Kate Hylan (06:35):
So Right. For the first time in the history of the
disease, we have more adultsliving with CF than children,
which is amazing because when Istarted, the average life
expectancy was 27. And I startedwith the foundation 13 years
yesterday.
Dane Shoemaker (06:52):
Yeah. Congratulations. Thank you.
Kate Hylan (06:54):
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 underlyingsymptoms of CF and battle those.
But now we have drugs thatactually are working to correct
the defect in the gene. And thedifference in the life span of
(07:19):
people with CF now isincredible.
Yeah. We have people living intotheir fifties, sixties, and
beyond. People are becominggrandparents that have CF. I
said for the first time in thehistory of the disease, there
are more adults living with CFthan kids, which is incredible
because it was never like thatbefore. Back in the fifties when
(07:40):
the foundation was found and,cystic fibrosis was discovered,
people weren't even living tograde school.
There was just nothing to helpit. And now through everyone's
donations and the hard work ofthe CF Foundation and our
scientists that we employ andworking with different
(08:00):
pharmaceutical companies, we'vereally made a huge impact. And,
Trikafta was passed through theFDA in 2019, and that drug has
made an amazing impact on thelives of people with CF who have
the Delta f508 mutation, whichis the common the most common
(08:21):
mutation.
Dane Shoemaker (08:22):
Got it. Okay. Yeah. So you, you mentioned that
that the foundation was foundedin 19 fifties. Tell me a little
bit about the history, You know,how was it started?
Why was it started?
Kate Hylan (08:32):
Sure. It was founded in 1955, actually, in
Philadelphia, which is exciting.Our headquarters are now down in
Bethesda, Maryland Okay. Rightoutside of Washington DC. It was
founded by parents, parents whodiscovered this.
And, like I said before, becauseit is considered an orphan's
disease, which means, there'snot enough people for the
(08:55):
government to care about it. Allof the funding for medical
research, we have to raiseourselves.
Dane Shoemaker (09:04):
Sure.
Kate Hylan (09:04):
So, that's what we do all day every day, call
people and ask for money, askfor donations, encourage them to
do fundraising themselves. Butwe also wanna raise awareness
about the disease too. Not thatmany people know what CF is. I
had no idea what cystic fibrosiswas 14 years ago before my
(09:25):
nephew was born. I got involvedbecause I have a nephew who has
CF.
Dane Shoemaker (09:29):
Mhmm.
Kate Hylan (09:31):
But it now is just raising awareness and funds to
create a cure for everyonebecause we do have that amazing
drug Trikafta, but it only helpsabout 90% of the population. So
there's still that 10% that hasrare mutations that we need to
find drugs for them as well.
Dane Shoemaker (09:52):
Sure. Sure. So in terms of the activities and
the programs, can you tell me alittle bit more about that?
Like, what what CFF offers?
Kate Hylan (10:00):
Yep. We do everything. Yeah. We have
locally, we have 11 differentwalks. So it's free to walk.
You come, you form a team, youregister. We our local chapter
is the eastern half ofPennsylvania, South Jersey, and
the whole state of Delaware. Sowe cover a pretty big region.
Dane Shoemaker (10:23):
Yeah.
Kate Hylan (10:25):
We have a climb event coming up in November at,
Lincoln Financial. You climb upand down the steps through the
lower bowl of where the Eaglesplay, which is not what I do,
but a lot of people really likeit. It's a really cool event,
and, it's cool because you getto meet Swoop and see the Eagles
(10:47):
pep band, I think they'recalled.
Dane Shoemaker (10:49):
Okay. Yeah.
Kate Hylan (10:50):
And, you just get to raise funds and awareness, and
you get to see the link when noone's there. So that's pretty
cool. We also have what we callthemed events, which are finest
young professionals events,which is really cool that
usually happens in June. Okay.And we have a saver event this
(11:10):
fall, which is a chef's tasting,which is really cool too.
That's at the Lucy, one of theChesca Fete ballrooms down in
the city. Okay. That's inOctober, climbs in November. We
also have Paddle For A Cure,which is down the shore, Stone
Harbor. We have that in thesummer.
(11:33):
We also have, different type ofonline events. So we have an
event called Rose Up, which iswhich was started by adults with
CF 5 years ago. And it's reallyjust passion fundraising, which
is you pick whatever you wannado and have an event and raise
(11:53):
money that way on your ownterms. So that's pretty cool
too.
Dane Shoemaker (11:57):
Yeah.
Kate Hylan (11:58):
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 wereally have something for
everyone.
Dane Shoemaker (12:08):
Yeah.
Kate Hylan (12:09):
We have Cares events for the families that are they
get to get to get together, fordifferent dinners or happy hour
type events. We have a youngprofessionals group, tomorrow's
leaders, and they get togetherfor different things. They just
did their Christmas in Julyevent, which was getting books
(12:30):
and different, inpatient toysfor, DuPont, which is one of our
care centers. Okay. So that'sreally great.
We really have something foreveryone. We have advocacy
events. We have grampians eventswith our grandparents. Yes. So
we do it all.
Dane Shoemaker (12:48):
Yeah. That's great. Yeah. And then just in
the terms of, like, the servicesyou provide to patients and
those types of activities, thethe fundraising helps fuel some
of that. Tell me about, like,what are the the the things that
you guys are doing for
Kate Hylan (13:01):
Sure.
Dane Shoemaker (13:02):
Yeah.
Kate Hylan (13:03):
We have a program called Compass within the
foundation that, 844 Compass isthe number for it that if
anybody has insurance issues,because we know that happens a
lot with medical insurance andpeople not wanting to cover
different things that areneeded.
Dane Shoemaker (13:20):
Yeah.
Kate Hylan (13:21):
So Compass takes care of that and helps, all of
them. We have a care centernetwork. Locally, we have 5 care
centers within our region. Sowe, help them with supplies and
we work with them on differentthings and ask how we can help
them. We have the CARES events,which are CARES takes on
(13:48):
different groups of people andbrings them together.
So there's parents' dinners, andthere's siblings' dinners, and,
grandparents' dinners, differentthings like that.
Dane Shoemaker (13:59):
Yeah.
Kate Hylan (14:00):
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, whicheverybody goes down to DC and
talks to their senators abouttrying to get more money for the
CF Foundation now that it'sbecoming a bigger disease
(14:20):
because people are living longerand different things are
happening with that too.
Dane Shoemaker (14:24):
Yeah. Oh, that's great. And so a lot of advocacy
support Yeah. For families, fortheir patients, lobbying a
little bit. And you said youemploy scientists too?
Do you are you act?
Kate Hylan (14:33):
Yeah. So the foundation has a lab up in
Massachusetts
Dane Shoemaker (14:37):
Okay.
Kate Hylan (14:38):
That we employ all those scientists, and they're
Dane Shoemaker (14:41):
Wow.
Kate Hylan (14:41):
Doing everything. So, I don't know how much you
know about developing drugs, but
Dane Shoemaker (14:46):
Not really.
Kate Hylan (14:47):
For I'm not a scientist either. So from
concept to passing through theFDA, it costs $1,000,000,000 for
a drug. So that's why we have tokeep continuing to fundraise
because we need that money totry and get all of these
different, trials passed throughthe FDA and drugs. So, right
(15:10):
now, we have a huge pipeline ofdrugs for different things,
different aspects, new, inhaleddrugs that help with lung
function, new enzymes that canhelp as well. There's all
different drugs.
We're on, the second generationof Trikafta is Okay. Being
(15:30):
tested right now. The firstgeneration had some liver
function issues, like the sideeffects. It also had some side
effects with mental health onyounger people. So they're
trying to correct that toobecause the drug really is a
game changer.
Dane Shoemaker (15:49):
Yeah. That's great. What about any, like,
success stories that you may befrom patients or anything like
that you wanna share? Anythingthat, you know, hits home? Or
Kate Hylan (15:59):
Yeah. I mean, I can I can't really speak to that
many success stories of ourpatients? Trikafta has been
huge. I can talk about my nephewa little bit. I said I have a
nephew who is 14 who has CF.
Dane Shoemaker (16:13):
Tell me about that. Tell me about him. Yeah.
Kate Hylan (16:15):
Started Trikafta the day the world shut down. So
Friday 13th, which is Friday13th is today.
Dane Shoemaker (16:22):
That's right.
Kate Hylan (16:23):
Yeah. But that was Friday 13th March in 2020. He
started Trikafta the day theworld shut down.
Dane Shoemaker (16:30):
Yeah.
Kate Hylan (16:31):
So
Dane Shoemaker (16:32):
So how old is he now? 14?
Kate Hylan (16:33):
He's 14 now.
Dane Shoemaker (16:34):
So Okay. So 2010, he was born Yep. And he is
living with CF
Kate Hylan (16:39):
Yep.
Dane Shoemaker (16:40):
For 9 toward 10 years or so. Okay. He was
Kate Hylan (16:43):
in the hospital probably for what they call tune
ups, which, happens a lot. It'sjust a 2 week stay for inpatient
for CF patients where they getdifferent IVs, and it helps
their lung function. They dobreathing treatments. It's just
more concentrated and morehelpful that CF patients do
that. So since he startedTrikafta, he has gained £30.
(17:08):
He has grown 5 inches.
Dane Shoemaker (17:12):
Wow.
Kate Hylan (17:12):
And he was doing 4 breathing treatments a day for
30 minutes each and taking 760pills a month Wow. Which is for
a 10 year old, 12 year old, it'scrazy. That's so but that's all
he ever knew.
Dane Shoemaker (17:30):
Yeah.
Kate Hylan (17:30):
And now he takes Trikafta in the morning and
Trikafta at night. He does nothave to do any breathing
treatments, and he just has totake enzymes when he's eating
fatty foods. And he hasn't beenin the hospital. We're gonna
knock on wood there.
Dane Shoemaker (17:45):
Oh, that's that's absolutely incredible.
Kate Hylan (17:47):
Yeah. It's Yeah. The drug is really a game changer
for people that have thespecific mutation, but we need
to get that game changer drugfor everyone. So that's why our
mission is still so important.
Dane Shoemaker (18:01):
Yeah. Yeah. Is that is that a challenge to get
that out? I mean, it's out inthe market now.
Kate Hylan (18:06):
It is. It is. Some insurances don't cover it.
Dane Shoemaker (18:09):
Yeah.
Kate Hylan (18:09):
So it's really expensive to have drugs that
insurance don't cover. So, mysister pretty much meets her
insurance deductible on the 1stday of the year every year.
Yeah. But yeah. No.
It's it's really a game changer,and the foundation is doing
amazing things to try and getother drugs for the last 10%.
Dane Shoemaker (18:32):
Sure. Yep. So, in terms of your role director
of development, are you involveda lot of those fundraising
activities, organizing thoseevents, or what else, you know,
what what are you doing here?
Kate Hylan (18:43):
Yeah. So my role consists of working on the peer
to peer program, which is ourwalks and, any type of endurance
event, which is climb and,cycle. And we used to have a
hike event, paddle, all ofthose. So I work I have worked
on every walk that we've had.When I started, we had 16 walks.
(19:06):
Some of them have combined
Dane Shoemaker (19:07):
Yeah.
Kate Hylan (19:07):
Over the years. But I work on our walk program. I'm
also the care center liaison, soI work directly with the care
centers, the 5 different carecenters. We have one at
Jefferson. So Jefferson, Penn,and ChristianaCare are our main
adult care centers, and thenCHOP and DuPont, New Moores are
(19:28):
youth care centers.
So all of our patients go tothose 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'tdone in the past 13 years. Yeah.
So mainly I work on our walkprogram and help with that.
Dane Shoemaker (19:51):
That's great. So, you know, this will this
episode will probably come outend of September.
Kate Hylan (19:58):
Okay.
Dane Shoemaker (19:58):
What, what do you have coming up this fall,
you know, that people should beaware of?
Kate Hylan (20:03):
Sure. We have, our event Savor at the Lucy on
October 21st.
Dane Shoemaker (20:09):
Okay.
Kate Hylan (20:10):
That is a chef's tasting event. There are
opportunities for sponsorships.You can buy a ticket. The food
is delicious. Yeah.
It is it comes with a, auctionthere as well, so you'll have
different items to bid on. We'llhave a bid for a cure speaker,
(20:32):
so that'll be someone with CFwill be there to tell their
story. And then bid for a cureis a $100 tax deductible
donation. That's just awesome togive at that event. Sure.
And then October 24th, we haveRose Up, which is our, event
(20:54):
started by CF adults that is,completely online. You do
whatever you want as the roseup. You can do it on the 24th.
You can do it leading up to24th. It's the 5th year for that
event.
So, nationally, we have a$555,000 goal. So we're trying
to reach that as well. And thenNovember 9th is our climb event,
(21:20):
and that takes place at thelink. You can if there's a timed
climb and a fun climb, so youcan do it as quickly as you want
with the timed climb to try andbeat everyone else's climbs.
Yeah.
Dane Shoemaker (21:36):
Yeah. Yeah.
Kate Hylan (21:36):
Or you can do it as a fun climb. There's also an
aspect of that where you cancome and just cheer for the
different people participatingin that. So that's really cool
as well. You can findinformation about those are the
last three events of the year,and then our, spring events are
when we start the walks. So wehave the walks in the spring,
(21:56):
the, registration websites openfor them in November.
Dane Shoemaker (22:03):
Yep. Okay.
Kate Hylan (22:05):
And you can find information on all of that
atcff.org. And then if you lookat the local if you look for a
find a chapter and type in yourzip code or Newtown Square,
that's where we're located.It'll take you to our home page,
and that'll give you all theother information about how to
contact us and get in touch with
Dane Shoemaker (22:24):
us. Great. Great. And you're national. You
have chapters all over thecountry?
Or Yep.
Kate Hylan (22:28):
We have chapters everywhere. The San Diego
chapter takes care of of Hawaii,and the Washington chapter takes
care of Alaska. But in thecontinental United States, we
have chapters all over. Sowherever you are, you can find a
chapter close to
Dane Shoemaker (22:45):
you. That's great. Right. Yeah. Anything
else you wanna share, Kate?
Kate Hylan (22:50):
I don't think so. Thank you so much for hosting us
and giving us a platform to talkmore about
Dane Shoemaker (22:57):
Of course. I mean, it's it's incredible work
that you do and, you know, thethe organization. It's a great
mission and, you know, congratsto 13 years as well. I mean,
it's just a
Kate Hylan (23:05):
Lucky number 13.
Dane Shoemaker (23:07):
This is
Kate Hylan (23:07):
our year. If anybody wants to donate $1,000,000, give
me a call.
Dane Shoemaker (23:11):
Absolutely. Okay. Thanks so much.
Kate Hylan (23:13):
Thank you.
Dane Shoemaker (23:16):
Thanks for listening today. Shoemaker Lab
is an original production byShoemaker Films LLC. If you
enjoyed today's content, pleaseconsider subscribing on YouTube,
Spotify, Apple Podcasts, andwherever you get your content.
Follow us on Instagram atshoemaker.films. And if you're a
business that's eitherinterested in our video
production services or wouldlike to be a guest on the show,
(23:39):
get in touch by using thecontact form on our website,
shoemakerfilms.com.
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