#78 | Underfunded Pediatric Cancer research - CancerFree Kids with Jill Brinck

This Cincinnati non-profit began with personal tragedy and two decades later, saves lives.

Executive Director Jill Brinck discusses the high-risk/high reward research they raise millions to fund.

Click here for CancerFree Kids events

Jersey Mike's Day of Giving for CancerFree Kids is March 27, 2024.

Episode Transcript

(00:02):
This week, I'm on iHeart Cincy. Imagine finding out your baby has cancer.
That's a reality for millions of familiesin the US, and it was
the reality for Ellen and Sam Flanneryof Cincinnati two decades ago. After finding
out their five month old baby girlhad eye cancer, Ellen wanted to join
a local group to help raise moneyfor pediatric cancer research, but found none.

(00:26):
Ellen she'll tell the story of Ididn't want to create a nonprofit.
That really is not what I wantedto do. I just wanted to help
fund this research that nobody else wasfunding, and so she decided to do
it herself and she did. CancerFree Kids provides research grants for the type
of high risk, high reward researchthat's almost impossible to get funding for.

(00:48):
So many promising ideas go unfunded andtherefore untried. Today you're going to hear
from the executive director of Cancer FreeKids, Jill Brink. We're going to
talk about the life saving research staysupport and their upcoming fundraiser, which includes
an overnight party for over one thousandteenagers right here in Cincinnati. No On,
iHeart Cincy with Sandy Collins. You'regonna love Today's guest Jill Brink.

(01:15):
She is the executive director of CancerFree Kids. And let's get right to
it. So let's start with you. Tell me how you started with Cancer
Free Kids, and then we'll gointo the history of the nonprofit and how
it started and all that. Sosure, So I have been a nonprofit
my entire career. I was atUnited Way for a long stint, and

(01:38):
then at the American Heart Association ontheir development team. And I had a
friend and volunteer reach out to mewhen Ellen, our founder, wanted to
make the decision and made the decisionto step back out of kind of operational
day to day and look for hersuccessor. And as they were doing that,
he reached out to me and askedto your next step And I said,

(02:00):
you know, it has to besomething with kids. I love kids.
That's where you know, my passionreally comes from and is fueled by.
And I said, I would loveto get beyond just the development function.
And I had, you know,gone back to school and gotten my
NBA from Xavior and had taken someleadership courses and really just wanted to you

(02:21):
know, continue developmentally more holistically asa leader. And he said, well,
I have somebody that I need youto meet, and Ellen and I
met and it was I think threeweeks later that the deal was done.
Wow, and I was moving intothe role. And it actually, you
know, it's serendipitous and kind ofthat red carpet. My undergrad's actually in

(02:44):
biomedical science, and I never reallythought I would ever get to use it,
and after I had been established inmy career for a few years in
the non profit sector, so thisreally was just a perfect opportunity to kind
of and not to say that Iunderstand all the technical aspects of our work
by any means, but I enjoythat and can follow along a little bit.

(03:07):
Yeah, I would imagine, Iwould imagine what a what a benefit.
All Right, So let's talk aboutCancer Free Kids. You are the
executive director, and the mission isto fund the high risk, high reward
research. Let's talk about that.Say, yeah, research that would otherwise
go unfunded is really where we wantto lean into. In pediatric cancer research

(03:30):
as a whole is tremendously underfunded.And that is why is that four percent?
Right? Is it? Four percentof the cancer dollars pediatric cancer That
number could be you know, alittle bit up or down a couple percentages
depending on how you cut the dice, but in general four percent is the

(03:51):
number that's used and funded in itstraditional manner from the National Cancer Institute.
And it's very simple from an industrystandpoint, it's not profitable, you know,
so just economics with the volume ofpatients don't make sense for drugs to
be developed for children and the patientvolume, you know, there's some there's

(04:15):
some just challenges logistically of executing clinicaltrials with patient volumes that you know,
there's only a certain number of diagnosesthroughout the whole country over the course of
a year, and that type ofthing as well, So there are lots
of complications, but it's ultimately drivenby drug companies just will not invest in

(04:36):
research that will fuel pediatric therapies unlessthere's an alternative motive, right of profitability
in some other capacity. And onyour website you explain that children are taking
adult research medications and that can causeproblems and side effects and lifelong issues with

(05:00):
them. Can you go into detailabout that. Absolutely. I just talked
to a family over the weekend thatwas enduring that and you know, basically
there are last our account was aroundseven hundred drugs available for adults with cancer.
In pediatrics, there are thirty sixdrugs approved for pediatric cancers, and
so oftentimes when there isn't responsiveness toone of the drugs that has been approved

(05:28):
of you know, kind of standardprotocols in the pediatric space, they will
go to alternative drugs and potentially givethe child a therapy that is only improved
in adults. I literally just talkedto a family over the weekend that that
had happened, and unfortunately the leukemiaccounts were actually higher than what they were
upon diagnosis, so it didn't work, and you know, it just it's

(05:53):
it's devastating to families when they getto a point where there's no option,
and that happens way too much.And I think even the options that are
out there, so many of thedrugs that are available are from the seventies
and eighties and were developed literally decadesago, and it's chemo. It ravishes

(06:15):
their bodies. There's countless studies onjust the impact long term of what that
impact will be in other complications thatwill occur with chronic health conditions down the
road. So that is really youknow, what happened with our founder and
her journey with her daughter. SoCancer Free Kids was founded by Ellen Flannery,

(06:39):
Ellen and Sam and their daughter wasdiagnosed with retinue blastoma and both eyes
at five months old, and theykind of had this aha moment throughout the
course of their journey, which fortunatelyhad a positive outcome. And Shana's amazing
and saw she is. Yes,she's incredible, And you know, I

(07:00):
was thinking just this morning, man, this whole this whole organization started with
one child, and it's amazing whatthey did to get it off the ground
and to make a difference. Butyou know, ultimately they wanted to fill
the gap. And Ellen, Ilove she'll tell the story of I didn't
want to create a nonprofit. Thatreally is not what I wanted to do.

(07:23):
I just wanted to help fund thisresearch that nobody else was funding and
she couldn't find anyone doing it,and so she decided to do it herself.
And that was really how we cameto life. And I've been,
you know, fortunate for the lastfive years to have an opportunity to help
maybe the mission forward well for somebodythat didn't want to start a nonprofit.

(07:45):
More than seven million dollars has beenraised and granted out? Is that right?
Eight point two? Now? Eightpoint two Now I was going to
say, and that actually doesn't includeour most recent investment that we just announced.
So it's nine point four or fiveafter we cut the checks wow this
month. So so you you findhow does it work? How do you

(08:07):
notify researchers that the grants are available? So we partner with Cincinnati Children's Hospital,
a Nationwide Children's Hospital, and Columbusthe model. We fund Cincinnati for
obvious reasons, since that's where we'relocated, and most of our support comes
from the lead physician at Nationwide Children's, the head of their oncology division,

(08:30):
doctor Tim Kreipe. He was atChildren's when the organization was founded and actually
helped develop the model. And whenEllen talked to him and said, tell
me where to send the money thatwill make the biggest impact, it was
his direction to go in the space. And so what happens is we have
applications that go out and researchers canapply for what we call a New Idea

(08:52):
Award, and it's really, youknow, give us your best idea,
give us something that's untried that isnot just to incremental improvement, but can
really change the game in developing amore effective or a gentler therapy for kids.
So that's one category. And thenlast year and twenty two we added

(09:13):
on what we call our Accelerator Award, and that is an additional grant up
to one hundred thousand dollars for oneyear that will really fund the most promising
of the New Idea Awards to justcontinue to accelerate them as fast as possible,
because we were finding there was agap between the New Idea Awards success
and then being able to go andget that next grant, that subsequent funding.

(09:37):
So this was our way to helpbridge that for a year but continue
the progress on the most promising ideas. So once those applications come in,
we have an independent scientific Review Councilthat looks at those with some of the
most renowned physicians around the country.We've been really fortunate to have our chair
of that committee is highly connected andextremely experienced and has a lot of connections

(10:03):
and networks. So we have leadersfrom the Children's Hospital in Philadelphia, LA
DC, really from the best institutesfrom all over the country, and those
are the folks who make the decisionabout what grants to fund. Fortunately,
it is not me or are areeven our board that is, you know,

(10:26):
they're wonderful, but they're lay likethey're not they're not researchers. So
we really are grateful for our folkswho will take the time to do that
to make sure that our dollars thatwe do invest are two the absolute you
know, boldest and bravest ideas,but will have the greatest impact as well.

(10:46):
How do you track the success ofthe grant that you provide and then
their research? How do you howdo you keep track of that? I
think that's somewhat of the beauty ofthe local nature of our organization and the
fact that we are literally on theground with both of the institutes, and
so we not only grant the money, but oftentimes we're beside them along the

(11:11):
way in regards of how's it going, and can go and sit down with
them and they can take us throughtheir process. So it's not you know,
extremely technical. We ask we ask, you know, how are you
doing? Where's your next funding?And we continue to look for ways to
support them, or if we findorganizations that are similar to ours that want

(11:33):
to fund a specific type of research, you know, try to connect the
dots so that they continue to receivethat funding as well. My guest is
Jill Brink. She's the executive directorof Cancer Free Kids, funding pediatric cancer
research right here in the Tri State. Coming up then, they're just awesome.
I mean they are true leaders.They design, you know, the

(11:54):
games and come up with the bestideas that we could never think of.
Coming up on iHeart Since. Thisis fifty five karc an iHeartRadio station.
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(12:18):
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Radio Free never sounded so good radio. This is iHeart Since, a public

(12:41):
affairs program produced for this iHeartRadio station. I'm Sandy Collins. My guest today
is the executive director of Cancer FreeKids, Jill Brink. She is a
head of this great organization that raisesmoney for pediatric cancer research right here in
the Tri State, started by husbandand wife Ellen and Sam Flannery about twenty

(13:03):
years ago, their daughter had cancerof the eyes retino blastoma, and she
wanted to help fund cancer research atthe time for children, and found out
there wasn't anybody doing that in thisarea, so she started Cancer Free Kids
as we know it today, andthey've got a great fundraiser coming up in

(13:24):
February. Thank you. Yes,we are launching our year off with our
one of our largest fundraisers. It'scalled Night for the Fight. It's actually
student based events, so for anyoneout there that might have high school students
looking for service hours or any otherway you can that's one way to support

(13:45):
the campaign. It's an overnight event, lock in style, per say,
where these kids are amazing. Wehave a student leadership team of about fifty
that designed the programming for it throughoutthe entire night, and they don't stop
all night long. And we havespeakers there that are young adults who have
battled cancer themselves, or siblings ofkids who've perhaps lost their siblings. It's

(14:09):
just a really impressive night of bringingmission and fun and impact all together.
And then for our folks who mightbe listening that aren't high school students or
don't have high school students, wealso the next piece on deck will be
Jersey Mike's Day of Giving, andJersey Mike's were grateful here locally to be

(14:31):
the benefactor of their Day of Giving. And so all sales on March twenty
seventh go to Cancer Free Kids.And last year that was almost three hundred
thousand dollars. So it's an incredibleday. It's really fun. You'll have
to go early or order mobilely,but pick out up an hour later.
Right, it's awesome. And whatday is that again? In March?

(14:54):
It's March twenty seventh, okay.And then last year you said that A
Night for the Fight raised a quarterof a million dollars with the lock in.
All these kids did it? Didit? Did? How much does
it cost for a kid to participate? Sure? So our ask is that
they raise It's a twenty five dollarsregistration fee, and then they raise one

(15:16):
hundred and twenty five dollars in additionto that to join. And some will
do that in groups and group fundraisingor restaurant fundraisers, or we have kids
that will go out and get sponsorshipsfrom you know, parents, companies or
you know that type of thing aswell. So there's a whole host of
ways. Denados is actually a reallygreat partner in that, and they will

(15:37):
they give us their Donato cards whereyou can, you know, buy one,
get one free cards and the kidshave an opportunity to sell those for
ten dollars and we get all theproceeds from that as well. That's great.
And this is held on the campusthat you see in the fifth arena.
It is so it's a big thing. How many kids last year participated.
We had eight hundred last year.We're projecting twelve hundred this year.

(16:00):
So we before the pandemic, wewere we maxed out at sixteen hundred and
then, as you can imagine,had a couple of hybrid type events the
next two years and then but wewere back in its traditional form last year
in eight hundred, and you know, numbers were down because the kids didn't
know what it was. And nowthat they do, everyone's back and we're

(16:22):
already about I think we actually doubledour fundraising in November and December compared to
the year prior. From these students. And they're just awesome. I mean,
they are true leaders. They design, you know, the games and
come up with the best ideas thatwe could never think of, so really
fun from all this Cincinnati area schoolsin northern Kentucky. Is there a limit

(16:48):
or any sort of you know,requirement, Yeah, there's not at all.
We try to reach out to asmany high schools as possible and it
varies, so some we'll just haveindof an organic groups that you know,
comes from their school because they heardabout it from someone they play with on
a you know, on a teamwith from another school. And other schools

(17:11):
will you know, post a wholerally party and recruitment party for Night for
the Fight. It kind of justdepends on the school's interest. So if
we've got people of all ages listeningto the show right now. For young
people that are under I guess nineteen, right, they would have to be
in high school, how do theyfind out more about Night for the Fight?

(17:34):
Sure, you can go to ourwebsite is probably the easiest. It's
Cancer Free Kids dot org and thenNightfothefight dot org. Either way gives you
all the details and information and wemake sure you know, to communicate with
parents along the way to make surethat they know what their their child is
up to and can support their efforts. So yeah, it's kind of like

(17:56):
the the after prom. But noproblem. There's I mean, there's a
dance party at four in the morning, you know that students and come and
participate. And I got to tellyou that the karaoke is off the charts.
They really get into the karaoke innot a great way and they like,

(18:18):
how painful can I make it forothers that are standing around me?
That's funny. That hilarious. Allthe poor chaperones too, they have to
go through that, particularly like thesecurity guards that have to stand near the
karaoke. We have to be reallycareful with who we put in that spot.

(18:40):
That sounds like a blast. AndI would imagine too, you're going
to make friends cross school districts whenyou hang out with a thousand people your
age. We see a lot ofthat we do, and that's kind of
the the beauty of it not beingschool based. You know, the teams
are not a lot of them arefrom the same school, but it doesn't

(19:00):
have to be. You know,the teams are just whoever you know,
whoever you're friends with, and itcan you know, really pull kids together
as well as give them that leadershipopportunity that we love to see and love
to see that come to life insupport of the kids that we're trying to
support. That's great. If youjust tuned in, I'm talking with Jill

(19:22):
Brinks. She is the executive directorof Cancer Free Kids, which funds research
that otherwise would go unfunded for pediatriccancer. What has been the biggest impact
that you have been involved with inyour time with Cancer Free Kids. That's
a great question. I think inmy tenure, we've had two new FDA

(19:42):
approved drugs that you know, haveoriginal roots back to Cancer Free Kids.
The two startup companies that have alsoroots back to Cancer Free Kids are making
great progress. One of them inparticular, progress against development for a drug
for DPG, which is terminal.It's what Lauren Hill passed away from,

(20:04):
and so anything that we can dofor that type of diagnosis is extreme.
But we've funded some research that ifyou've heard about Children's new proton flash therapy
work that they're doing, we've fundedsome really exciting work in that space,
and that is life saving. Imean at the you know, and if

(20:26):
it's we we don't have that.Here's a kid who was saved by Cancer
Free Kids because of the nature ofthe early stage work, but we do
have those new drugs and new therapytreatments in technology advancements that have those roots
that we confidently can say, andthe doctors at Cincinnati Children's have said,

(20:51):
you know, there are kids runningaround today because of the research that Cancer
Free Kids has funded. So it'sit's emotional, it's very emotional. That's
it's thank you. So you you'vegot this fundraiser in February and then March
with the jersey Mike's anything farther downthe road, Do you want to kind
of save a date? Sure,we have, as you can imagine,

(21:15):
we have beings throughout the entire year, and our website is probably the best
place to see all the things.But the big, you know, mass
scale events that we work on.We have a Butterfly Walk at the Zoo,
which is really great, very familyfriendly, and that's in the middle
of May, beautiful Day morning wherewe bring families together in celebration of all

(21:38):
the warriors and their courage. Andand then in the fall September Childhood Cancer
Awareness Month, so that's a hugemonth for us. We have something called
one hundred Mile Challenge, and thatis just an engagement opportunity where you can
raise one hundred dollars and complete onehundred miles to say of activity. So

(22:00):
that can be daily steps, thatcan be bike rides. We have conversion
charts on you know, an hourof yoga equals you know, two miles.
It's it's as you can imagine,it's really more just about bringing awareness
to the cause and getting the communityinvolved. So that's a new initiative for
us that's been really successful and issomething we're excited about. And then we

(22:23):
finish that month with our Celebration ofChampions, which is our kind of dinner
and auction events. But then wethe last two years and we'll continue it
this year of tact on an afterparty concert and we have that at Ovation
over in Newport, and so wedo the dinner and auction programming inside and

(22:44):
then we go outside afterwards for theconcert and it's just a really fun night
and anyone can can come to thatas well. I love to give people
opportunities to volunteer because it's it's it'srewarding to give back and you certainly need
volunteers. I would imagine what kindof volunteer opportunities do you have? We
do. We're actually night for thefight is a huge one. We require

(23:07):
about four hundred volunteers for that night, So if anyone's interested in stand up
all night with a bunch of kidsand listening to god awful karaoke, like
right there, let's go. Butif that's not your speed, we also
need a lot of volunteers leading upto the event, as you can imagine,
just preparing for it and whatnot.And then we're actually just starting to

(23:30):
recruit volunteers for our day of givingat Jersey Mike's as well. What we
do is we put volunteers in thestores during peak times to just help support
their team. They work so hardand they're slammed all day. So our
volunteers are there to greet customers,to help us tables, restock chips,
you know, really whatever it isthat the stores need that way, and

(23:53):
just take care of the store andtheir staff and us to help and however
we can. And those are justtwo hour shifts. I think we do
it around lunchtime and then again arounddinner time just to support their team.
So we're actively recruiting for that aswell. That's great, and if businesses
want to get involved with you yourcontact information is there cancer Free Kids dot

(24:14):
org. There's a lot of reallywonderful businesses in town. They have money,
they have the interest, but theydon't always have the inspiration. And
I think Jill Cancer Free Kids isa great organization, and I'm really glad
that we got a chance to talkand promote your Night for the Fight event
starring young people and karaoke singers andfood and fun and all in an effort

(24:42):
to knock out childhood cancer. Sothank you for what you do. It
was great. Let us know afterwardshow you did. We'll do a follow
up and talk about the next onewith Jersey Mike, so maybe sometime in
February. How's that sound. That'sawesome. Thank you so much, Sandy,
really appreciate it. So nice tomeet you and YouTube. Jill Cancer

(25:03):
Free Kids Night for the Fight,presented by TQL Foundation is coming up February
twenty fourth. If you've got ahigh schooler, this lock in overnight party
starts at seven pm on the twentyfourth, goes to seven am, and
the kids will be up all nightlong, of course, raising money for
pediatric cancer research right here in Cincinnati. Find out more at Cancerfreekids dot org

(25:30):
or just search Night for the Fight. If you have any questions, comments,
suggestions, just shoot me an email. iHeart Sinsey with an Ie at
the end at iHeartMedia dot com.Look forward to hearing from you. Look
forward to seeing you here next week. iHeart sixty is a production of iHeartMedia, Cincinnati,