July 2, 2025 • 51 mins
In this World Allergy Week episode, I'm joined by Ilana Golant, Founder and CEO of the Food Allergy Fund. She exposes the significant gap between the prevalence of food allergies and the amount of research dollars devoted to this. Ilana shares how the FAF is stepping into this gap, ensuring that every dollar donated goes directly to research on prevention, treatment, and eventual cures. She reports on the most exciting findings from this year's FAF Summit.
We discuss:
- How a mother's love became a catalyst for global change
- The food allergy crisis: stats, trends, and what's fueling the growth
- The disproportionately low amount of funding, and how FAF is turning the tide
- Ongoing research on the microbiome and AI predictive model for food challenges
Tune in to learn about this innovative model reshaping food allergy research and how you can be part of it.
Food Allergy Fund
Food Allergy Fund (@foodallergyfund) • Instagram photos and videos
Food Allergy Fund | Facebook
Food Allergy Fund (@foodallergyfund) / X
Ilana's mental health: Invisible Burden: The Mental Health Cost of Food Allergies - Thrive Global
2025 Summit Videos: FAF Summit April 2025 — Food Allergy Fund
Every Cure – Unlocking the hidden potential of existing drugs to save lives
Special thanks to Kyle Dine for permission to use his song The Doghouse for the podcast theme!
www.kyledine.com
Find Dr. Whitehouse:
-thefoodallergypsychologist.com
-Instagram: @thefoodallergypsychologist
-Facebook: Dr. Amanda Whitehouse, Food Allergy Anxiety Psychologist
-welcome@dramandawhitehouse.com
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Ilana Golant (00:00):
I just wanna like scream it from the rooftops, why
is food allergy skyrocketing?
Why is there very limitedinterest.
Why is there a limitedinvestment?
Why are we just asking thesequestions now?
When the numbers have beenskyrocketing for 15 to 20 years,
this didn't happen overnight.
The food allergy epidemic hasbeen growing and growing and
(00:22):
it's now reached epidemiclevels.
And the irony is, although it isat epidemic levels from a
population standpoint, from aninvestment standpoint, it's like
a rare disease.
So it's an oxymoron, right?
It's like we're effectively arare disease and if you are
classified as a rare disease,you're actually able to seek
certain funding from thegovernment and other
(00:43):
philanthropies that we don'teven qualify for.
So we kind of, we fall inbetween in, in many other ways
as well.
Speaker (00:52):
Welcome to the Don't Feed the Fear podcast, where we
dive into the complex world offood allergy anxiety.
I'm your host, Dr.
Amanda Whitehouse, food allergyanxiety psychologist and food
allergy mom.
Whether you're dealing withallergies yourself or supporting
someone who is, join us for anempathetic and informative
journey toward food allergy calmand confidence..
Amanda Whitehouse, PhD (01:14):
Welcome back to a new season of Don't
Feed The Fear.
I appreciate you listening somuch and I'm so excited that it
is summer and time to move intoa really exciting topic.
We are going to be talking aboutchoices, and choices bring us
hope.
They bring us a sense ofcontrol.
They can also sometimes.
Bring a little bit of stressabout making the correct choices
(01:37):
or the idea that there is onecorrect choice.
So my goal this season is tohelp you to learn about options
that are out there, to help youto navigate the social emotional
impact of those choices andthose possibilities, and to help
you digest the rapid changesthat are happening within the
food allergy world.
(01:57):
I've got a great list of guestslined up for you.
I'm pretty sure we're gonnaextend far past the summer into
the fall, with all of the greatpeople who have agreed to come
on and talk to me about suchimportant things.
But I really wanted to starttoday by bringing you a guest
with not just a great story, butsomeone who.
It's doing amazing things tochange the landscape of food
allergy research.
(02:18):
There are a lot of people outthere doing great, great work,
but very few who are buildingsomething as ambitious and as
impactful as the food allergyfund.
The woman behind it.
She's not a doctor or aresearcher.
She's the mother of a child withfood allergies, an individual
living with food allergiesherself, an attorney, a former
marketing and PR executive, andgovernment official with the US
(02:39):
Department of Treasury.
And what she has managed tocreate with that unique
background is a global movementthat's funding the very people
who are on the front lines offinding a cure for allergies.
I want you to meet Ilana Golantbecause I think it's important
to see what's possible when youblend, passion, your unique
skillset as an individual and abig picture vision.
(03:00):
She's bringing scientiststogether in the Food Allergy
Fund.
She's bringing funding toprojects that really matter, and
she's doing it in a way that'scollaborative, transparent, and
completely mission-driven.
So in honor of World AllergyWeek, I'm honored to bring you
this conversation, whetheryou're a food allergy parent, a
researcher, a policymaker, oranyone who is impacted or cares
(03:21):
about this growing epidemic, youare going to be so excited to
hear about the amazing work thatthe Food Allergy Fund is doing.
I want to thank you so much forbeing here.
Ilana Golant is the founder ofthe Food Allergy Fund doing
amazing things and creatingamazing innovations in the world
of allergy, and I'm so excitedto hear the latest.
Ilana Golant (03:40):
Thank you so much for having me.
Excited to be here.
Of
Amanda Whitehouse, PhD (03:42):
course.
I would love for you to start,if you don't mind, telling us
the story that amazes me abouthow one day you woke up and
decided to take on this projectthat you have created.
Ilana Golant (03:55):
Yes, it was my New Year's resolution after months
of frustration as a mother,first and foremost, and we were
living in New York.
My daughter was first diagnosedwith food allergies.
We moved to dc.
We were seeing top doctors inboth cities who were giving us
polar opposite advice, and itwas reminiscent to me of.
A children's book that I love.
Choose your own adventure.
And it's one thing to chooseyour own adventure in a book.
(04:16):
It's a totally different thingas a parent to choose your own
allergy adventure.
And that's what it really feltlike to me that I was left there
kind of.
Struggling to decide what to dowith my tiny 13 month old.
Do I expose, do I not exposewhich foods, which foods to
avoid?
And so I had more questions thanI had answers, and that really
(04:37):
set me on my mission.
I am a lawyer by training, so Ilike to ask questions and do my
research and kind of figure itout.
And so what I realized is thatresearch into food allergy has
been grossly underfunded, evenas the population numbers have
skyrocketed.
And so after months offrustration and trying to figure
(04:58):
out, okay, well what can I dothat about this?
I can't go to medical school atthis point in my life, although
I guess it's never too late.
What can I do to reallyaccelerate research funding and
find answers?
Not only for my daughter, butfor everyone living with food
allergies.
And I myself developed foodallergies in the last two years
as an adult, and we're seeingmore and more adult onset food
(05:19):
allergy as well.
So I'm in it for my daughter.
But I live it kind of from, fromdifferent directions.
My daughter's allergic to nearly10 foods.
Um, I'm allergic to now multiplefoods as well, and it's.
Really challenging.
And every day it feels like,well, maybe we'll develop
another food allergy.
And it's interesting, in thefive years that I've been doing
this work, the younger thechild, the longer the list of
(05:44):
food allergies.
And this is anecdotal, I'd loveto confirm what I'm seeing
anecdotally.
And so much of our work comesfrom the patient experience,
what families communicate to us,what's on their minds, The
families are the early detectionsystem, right?
Uh, before it gets to theresearchers, it's the families
who are managing the patients,,who are managing this on the
(06:04):
front lines and can really tellus where, where are we headed
directionally.
And unfortunately, we're notheaded in a good direction.
You know, food allergy numberscontinue to skyrocket with no
end in sight.
You know, most recently Iactually had an anaphylactic
reaction during my daughter'sfood challenge.
Um, and this was about a yearago, right before our summit
(06:27):
last year, and I had no reasonto think I was allergic.
So we were at a food challengeand it was a Friday afternoon
and she was doing well and myeyes were itchy, watery, and I
thought, oh, it's a Fridayafternoon.
I'm tired.
It happens.
Um, I didn't say anything.
(06:47):
'cause you know, as a mother youjust focus on your child and she
said, mommy, you really don'tlook good.
And I said.
What do you mean?
And she says, you need, youshould go look in a mirror.
So I went to the bathroom.
I did not look good.
Um, I took a Zyrtec at theallergist's office and then it
got progressively worse.
(07:07):
And I am grateful to say mydaughter passed the challenge.
I brought her home and I tookmyself to the emergency room,
and it took me three hours to beseen.
And to get treatment.
And there I was, someone whoknows what allergic reaction
looks like.
I could advocate for myself.
(07:28):
And I was at the best hospitalin New York City, right?
So I had access to medical careand I was fighting with the ER
team to be admitted, to betriaged, to get steroids that I
desperately needed.
And I kept getting dismissed.
It's not a big deal.
This is something else.
Everything from quote, a gnarlycase of pink eye to a virus to
(07:53):
anything.
I was like, no, no, no.
I know about food allergies.
I need to be treated now, andthe fact that it took me three
hours to get what I needed whenwe know it can be a matter of
minutes.
Sadly that's where we are interms of the awareness level.
I hear this unfortunatelytragically, that so many
(08:15):
children get admitted to the ERand they are misdiagnosed.
Call it gaslighting, call it, Imean, this is your professional,
wheelhouse, but it's, it wasreally stunning to me.
And so at our summit last year,I ripped up my remarks that I
had written, and I talked allabout this experience and
(08:36):
actually showed pictures ofmyself, like with my eyes
swollen shut.
I was completely unrecognizable.
And quite a few people said tome, you're so brave to show
those pictures.
And I said, no, I'm not Everyoneneeds to see the face of
anaphylaxis because it is adisease and it has really
(08:56):
serious consequences.
And so we need to impress uponpeople how, how serious it is
and how we need education acrossthe board.
Amanda Whitehouse, PhD (09:07):
Oh gosh.
I'm so sorry that that happened.
I'm sure people will be curious.
Did you trace it back tocontact?
Do you think you touched theallergen she was ingesting and.
Touched your eyes.
Yeah, I think I must havetouched
Ilana Golant (09:17):
my eye.
Maybe I touched my mouth.
I certainly was not sittingthere eating it, w hich is also
what makes it so scary that itwas, whatever quantity it was,
it was minimal.
Speaker 3 (09:26):
Right.
Ilana Golant (09:27):
Um, but it was.
It was quite potent.
I've developed a few otherallergies and the other ones
that I've developed I think arebecause I cut them out of my
diet because of my daughter.
And so I hear that so often andI would encourage parents to.
You know, not to cut things outof their diet because we do see
adult onset food allergy just bynot maintaining a food in one's
(09:49):
diet.
And for me as a mom, I couldn'tbring myself in the early years
to eat something that couldpoison my daughter.
And so I just couldn't eat it.
And as time went on, I didn'treally want to eat it, and then
I just stopped a nd went yearswithout eating foods.
(10:09):
And that was, you know, amistake for my own food allergy
development.
But it's what I had to do formyself as a mother.
So it's always a cost benefit.
We, we all carry the mental load
Amanda Whitehouse, PhD (10:21):
it's one of those things, it's so much
easier said than done.
Keep it in your diet, keep it inyour other kids' diet, and be
just horribly, ridiculouslyanxious all the time.
You know, just.
It's so simple I was the sameway, but, but thank you for
making that point because I'msure there are people out there
who don't realize that yet and,and need to have that reminder.
I would love your perspectivewith as much knowledge as you
have and as much as you doveinto it about the trends in
(10:43):
funding food allergy researchbeing underfunded, and if you
have insights into why that is.
Ilana Golant (10:48):
That's the million dollar question.
Food allergy, there's thisinverse relationship between the
size of the patient populationand the amount of funding that
it receives.
Whether you look at federalfunding or pharma interest or
institutional investor interestin any of those spheres, there's
a significant mismatch betweenthe numbers.
(11:08):
The investment dollars.
And that is really not true inany other disease state.
And I think that is why wereally need to advocate for
awareness of food allergies as adisease.
And the way that you solvedisease is through research.
I think food allergyunfortunately has been, you
know, labeled helicopterparenting or a lifestyle choice,
(11:30):
or you're just anxious aboutfood.
I mean, I can't, I'm sure you,you know, as a mother you've
heard every version of foodallergy.
Uh, and, but the real versionand the most important version
is that this is a disease,right?
That we don't have control over.
We did not give our children.
Our children unfortunately, areliving with an invisible
(11:52):
disease.
It's invisible to the world, butto them it is hyper visible 24 7
on their minds.
On the minds of us as parents aswell.
Amanda Whitehouse, (12:02):
Absolutely.
And you made a good pointearlier that, before it has time
to go through the researchprocess and be validated
statistically, we know.
The people who are living withit.
We know.
In your case a huge example ofthat is, I know this is going
on.
I know this is a need.
I know there's not enough moneygoing toward it, so I'm gonna
take that into my own hands, coming from the ground up, from
(12:24):
the people who are living itYes.
Absolutely.
Yeah.
So thank you for doing that.
You said, I was a lawyer, butyou had quite a bit of
professional experience cominginto this, and so I think of
what you've done and I think howcould any person just think, oh,
I'm going to do this.
And what skills might benecessary.
And what did you pull in fromyour other professional
experience that allowed you toknow where to start taking
(12:47):
something like this on?
Ilana Golant (12:48):
Yeah, I mean, I've had a pretty varied career and I
think I've drawn on everyprofessional experience in my
work with the food allergyfunds.
So I started my career as alawyer.
I worked in the government, atthe treasury department at the
height of the financial crisis.
So thinking about how do yousolve problems that are
seemingly unsolvable, from alegal standpoint from a
communication standpoint.
(13:09):
I then worked in media and PRfor a decade and it's, it's the
storytelling part of it, right?
It's how do we tell the foodallergy story outside the
community and, I focused a lotof my work in the media world,
whether it was representingclients or producing content for
CNBC and other brands within theNBC Universal family.
(13:31):
I.
How do you tell that story tothe news consumer?
It's the same kind of skill set,right?
How do we tell the story?
How do we raise awareness in themost kind of highest impact way
to move things forward?
So drawing on all those skillsets and.
I worked in sales and, you know,fundraising is really important.
So if I'm raising money from, apremium advertiser, you have to
(13:54):
craft the pitch and we needmoney to fund research.
And what makes our structure sounique and has been so important
to me since day one, is that ahundred percent of donations go
directly to research.
And that really sets us apart.
From the rest of the foodallergy community where our
board, you know, takes on ouroverhead expenses.
So any family, whether they'regiving$10 or a thousand dollars,
(14:17):
that money is going to researchand that is critically important
to our mission, to our mindset,because we are all families,
we're all in this together.
Amanda Whitehouse, PhD (14:27):
On that note though, you left your
corporate positions, yourprofessional positions to do
this full time, right?
So how can you talk about that?
That was a big leap of faith foryou.
I.
Ilana Golant (14:37):
Yeah, and it was my side hustle at the beginning
while having other full-timeroles, but my full-time passion.
And so it's so exciting andgratifying to be able to bring
my professional lives andpersonal lives together.
It is truly the best job I'veever had.
The most exciting, the mostchallenging, the most impactful,
(14:58):
and it's.
I've had to learn a newlanguage, right?
Learning science is likelearning a new language,
learning a new ecosystem, um,earning the trust and
credibility within a totallydifferent industry with
incredibly smart, talented, youknow, researchers, the
scientific community and otherpartners that we work with.
So it's intellectuallychallenging as well and just so
(15:21):
gratifying to be able to tell mydaughter at the end of the day,
okay, I worked on food allergiesall day long.
Amanda Whitehouse, PhD (15:27):
I'm so curious what she thinks of your
work.
Ilana Golant (15:29):
Yeah, I mean, I think she is quite proud.
She spoke at the summit for thefirst time this year, which was
really wonderful to see.
And she talked about, her foodallergy journey, right?
How she wants to eat at abirthday party or eat at school,
eat at a restaurant.
I mean, the list goes on.
And how she is grateful for FAFand for science and really, she.
(15:53):
Loves FAF.
I mean, she once drew a portraitof different members of our
family and drew portraits,right?
Hair eyes, you know how youwould normally draw a portrait.
And then she got to drawing meand she drew the FAF logo
Speaker 3 (16:09):
Nice.
Instead of your face.
Ilana Golant (16:11):
Instead of my face.
Um, and so that was very, verysweet.
Aw, that's amazing.
Amanda Whitehouse, PhD (16:19):
Would you talk about what her
experience has been like
Ilana Golant (16:21):
We have had instances of bullying and k ids
can be mean very sadly.
I think in general, foodallergies make our kids more
resilient, more empathetic, morecompassionate.
So there is a silver lining.
I think they have to beresponsible at a young age, more
mature, at a younger age.
So that is the silver lining.
The flip side is that I.
(16:42):
Unfortunately kids are bulliedfor food allergies and there are
all sorts of studies that shownearly the majority of kids have
had a bullying incident in theirlives.
And you know, my daughter musthave been two and a half years
old and she was on the swings atthe playground and she had just
learned to pump her feet so shecould go on the big swing and
(17:03):
not go in the baby swing.
And so she was on the big swing,so excited that she could
finally pump her feet swing onher own.
And this other girl who wasabout a year older, but at the
same school as her, walked up toher un, provoked and said, why
are you on that swing?
You have allergies.
You should be in the baby swing.
(17:24):
She was too young to fullyunderstand it, but I as a mom
felt it viscerally.
And I, and I called the girl'smother that evening.
She was not at the playground.
She was with a caregiver.
So I called the mother and Isaid, look, this happened at the
playground, and I just want youto understand how.
(17:45):
Difficult food allergies arethat it is not a joke.
I mean, we see this in popculture all the time.
Unfortunately, food allergiesare the butts of many jokes,
including Saturday Night Live,among others, and had this
conversation with her and Ithought that it would really
lead her to apologize, to seethings differently.
(18:07):
And sadly, it led to her disinviting my daughter from her
daughter's forthcoming birthdayparty, and so it kind of went
from bad to worse.
And I know from so many familieswhat it's like, right.
In terms of their social lifesports teams, schools.
Unfortunately, everyone has someversion of that story where k
(18:31):
ids generally can be mean andthey don't understand it.
For the kids who understand itand are compassionate and
inclusive, it is remarkable andthose are really wonderful
friends and friendships to, tonurture and cherish.
Amanda Whitehouse, PhD (18:45):
It's a horrible story.
I'm so sorry for you as a mom.
I t's the best why, right?
To protect our kids from thesethings and not only to address
the medical side.
you're interested in the mentalhealth side of it too, To bring
that big picture in is, is awonderful starting point.
To address all those things.
How do you start?
How do you undertake this?
Once you decide you're gonna doit and you set your New Year's
(19:07):
resolution?
Ilana Golant (19:09):
Yeah, so I mean my first, I assembled our
scientific advisory board.
I drew up a wishlist of who arethe best and brightest minds in
food allergy and adjacentfields, who should be around the
proverbial table, thinking aboutwhere our money should go,
because I am not a doctor, I amnot a scientist, and I want to
make sure that we create acenter of excellence that can
(19:31):
really guide us in.
Where's the highest impact useof our dollars?
And so in assembling thescientific advisory board, we
have everyone frommicrobiologists to psychology,
to chemical engineering,environmental health, immuno
biologists, clinicians, you nameit, because we want this
multidisciplinary perspectivefocused on the problem.
(19:54):
Food allergy is not going to besolved with one magic solution.
I mean, that would be the dream.
That is not the case, right?
And so hopefully one day we worktowards a cure, but that cure is
going to be a combination ofapproaches, disciplines,
treatment, therapeutics,prevention, strategy as well.
(20:15):
And so kind of by forming thisscientific advisory board from
day one.
And I made a wishlist ofinitially 15 names, and I just
decided to aim high, right?
Like, go big or go home.
I'm just gonna go for the bestand see what happens.
And I cold called them and 14outta 15 said, yes.
(20:35):
We so desperately need this.
We need the research funding, weneed the multidisciplinary
collaborative perspective.
So that was kind of the firststep.
And then since then, it's reallybeen focused on how do we source
the best research projects, thebest scientists.
Our core mission is to fundresearch.
We also serve a really importanteducational purpose.
(20:57):
We host an annual summit.
In New York every spring wherewe bring together about 200
people from all parts of thefood allergy ecosystem.
So doctors, scientists fromaround the world, CEOs of early
stage therapeutic companies,early stage consumer tech
companies, and advocates andinvestors, media, right?
(21:17):
Everyone who needs to beinvolved in this discussion.
And we.
Record all of our summits andthen we make those recordings
available on our website.
So I encourage, your listenersto take a look at our website
and see not only this past year,year summit, which took place in
April, but going back through 10summits that we've done over the
(21:37):
last five years.
It's an incredible.
Repository of information,research, ideas, and I think
most importantly, hope andinspiration, right?
I think people leave the summitevery year and they tell me,
wow, I'm so hopeful because asparents, there's been so little
progress over the last 20 yearsas food auditories have
(21:58):
skyrocketed, and I'm veryimpatient, hopefully in the best
possible way, but it's.
Enough already.
Like we, we need to makeprogress.
And so our summits are reallyfocused on showcasing the
innovation, the progress that ishappening in the community, much
of which we're funding, but alsothings that we aren't funding
(22:19):
that we think are reallyimportant, contributions to the
field.
Amanda Whitehouse, PhD (22:22):
We can say it again later, but for
people who want to go find itright now, it's food allergy
fund.org.
Right.
Very easy to find.
Um, and so yes, let's dive inbecause you're just coming off
of your most recent springsummit.
So where do you wanna starttelling us what you shared and,
and what we'll find as we siftthrough the videos from the
event?
Ilana Golant (22:41):
Yeah, I mean the summit was terrific.
There was a range ofpresentations, so we actually
kicked off the Summit day with aPSA that we co-branded and
co-produced with Nickelodeon,which has been really exciting.
It's air, it aired across allNickelodeon platforms during
May, food allergy awarenessmonth, and across billboards in
Times Square and Union Station.
(23:03):
And so it was a really kind ofdrawing on my media hat targeted
at the children, right?
How do we communicate to kidsabout the kids in their
classroom?
The average classroom now hastwo kids with food allergies.
That is a startling number.
And so we need kids thinkingabout this first and foremost.
Uh, not to take us off topic,but my daughter had a reaction
(23:26):
at school recently to a non-fooditem and the kids immediately
recognized it as an allergicreaction and the adults in the
room did not.
And that was really telling tome that these kids are growing
up with food allergy,unfortunately, as part of their
daily lives, their daily socialcircles.
(23:49):
And so they figured it outbefore the adults did.
Wow.
Um, so which also kind ofunderscores why we're so excited
to have had.
The partnership of Nickelodeonin working with us and, and
co-branding this PSA.
So that was a really fun andexciting way to kick off the
day.
And then we had, earlier in theweek, right before the summit,
(24:10):
we hosted the first everresearch retreat.
And the research retreat wasreally meant to bring the best
and brightest thinkers into aroom together to come up with
new ideas.
And I said to them in my openingremarks.
Only half jokingly, we're gonnado this escape the room style,
right?
You're here with us in New Yorkbrainstorming, but we really
(24:33):
expect that you're going to comeup with new, innovative,
collaborative projects comingout of this retreat.
And the ideas flying during theretreat it was incredible.
And since the amount ofengagement, creativity, and
collaboration that has emerged,so as part of the summit we.
Highlighted a little bit of whathappened at the retreat and
(24:54):
tried to bring that magic tolife to the broader audience.
So that was incredible.
And we had a series ofpresentations by early stage
companies from around the world,from the uk, from Australia,
from Germany, and across theUnited States, talking about
everything from analyzing yourbreath for gut health.
(25:15):
To an inhalable epinephrine, toa new version of Xolair to the
interaction between mold andfood allergies.
So just a really wide range ofcompanies and business models
and new kind of infant formulathat takes out the allergenicity
of milk, which 20% of infants inthe US cannot consume cows
(25:37):
based, milk formula.
And so this is a formula thatsimulates kind of.
What it would be, but withoutthe Allergenicity, which is
pretty incredible.
So a wide range of really cooland interesting companies.
And then we had researchers fromacross the country, across
disciplines present.
(25:57):
We unveiled three projects thatwe're funding, one of which is
the first AI predictive modelfor food challenges.
So, you know, as parents, weknow how anxiety inducing the
food challenge is for.
The parents and for the kids asthey get older and kind of more
cognizant.
I mean, I remember the firstfood challenge that my daughter
(26:18):
was really aware of.
She must have been around fiveyears old.
Until then, she kind of didn'treally understand what was going
on, but at five, she suddenlygot very upset with me.
I mean, totally reasonably and,and to be expected, but like,
mommy, why are you doing this tome?
You told me I can't have this.
That's dangerous.
How could you do this to me?
And so, you know, there's thattrust between a parent and child
(26:42):
that the food challenge reallychallenges.
And so I.
We are funding the first AIpredictive model, uh, at the
Teknion to look at all of thefood challenge data that is
available, as well as certaindata sets that we have worked on
in collaboration with CincinnatiChildren's Hospital to start to
predict food challenge outcomesand take the guesswork out of it
(27:05):
for both the doctor and thefamily and the early results.
You can watch the video on ourwebsite.
It's.
Truly remarkable, but alsounderscores our interest in
bringing AI and other noveltechnologies into the food
allergy sphere.
Um, another study that we sharedis looking at the level of
(27:26):
comorbidities with foodallergies.
So I mentioned earlier, youknow, anecdotally again, like
what do we hear on the frontlines?
Well, we hear the younger, thekid, the longer the list of
foods.
But we also hear the longer thelist of other allergic
conditions, whether it's eeo, e,F, PIs, asthma, the list goes
on.
And so we asked the team atNorthwestern, which is the only
(27:48):
epidemiological team in thecountry to look at this level of
comorbidity and is our anecdotalsense.
Correct.
And I am sad or happy to reportthat it is correct, right?
Like kids are dealing with moreand more.
simultaneous chronic diseases,like what accounts for that?
And so that kind of ties with athird area that was, a project
(28:13):
in, in the gut microbiome.
And we actually had quite a fewpresenters focused on the gut
microbiome as the commondenominator and what can be done
from symbiotic therapies to kindof infancy and prevention
strategy, but a, a themethroughout the day was
definitely focused on the gutmicrobiome and what is going on
(28:34):
with the gut health of foodallergic kids.
Amanda Whitehouse, PhD (28:38):
Wow.
That's all sides of it.
You're addressing, diagnosis,root cause, preventing
eventually would be the goal andtreating now, which is all
angles that we need to beapproaching it from.
So it does sound very exciting.
What do you think you left withthe most excited about in terms
of timelines.
Will be out there and helpingand making changes soon.
Ilana Golant (29:01):
Yeah.
I mean, science takes time,right?
Right.
So I think in the next three tofive years we'll have really
significant breakthroughs.
We're already seeing.
Improved therapeutics.
We're seeing needle free optionsfor epinephrine.
But in terms of real cuttingedge breakthroughs that are
going to modify the disease, Ithink we're three to five years
(29:23):
out.
Which, is not soon enough,right?
As a parent, I wish it wasyesterday, but on the other
hand, I think we've reallyaccelerated the research
paradigm, the funding, theinterest in it.
And so, it takes a village,right?
And for us, no one wants to jointhe food allergy club, but once
you're in it, it's an incrediblydedicated, passionate, committed
(29:47):
community.
And so I think as a community,we have a lot to be excited
about and hopeful for, butscience takes time.
I wish, I wish we could speed itup and we're doing everything we
can and like I said, using ai,using CRISPR technology.
I mean these are all things thatwe are working into the work
that we're doing.
It was an important part of ourresearch retreat as well.
(30:09):
Another area that we're workingon that is gonna be faster and
really exciting is we're theonly repurposing program for
food allergy in the world.
And what that means is we'retaking drugs that are already
approved by the FDA, so we knowthey're safe and testing whether
they can be repurposed and usedfor food allergy.
(30:30):
So we're already funding tworepurposing studies when at
Mount Sinai and one atNorthwestern.
And we'll be announcing a fewnew repurposing studies.
Later this year.
Um, but that is kind of thefastest way in some ways to get
it in patients' hands.
And I was really inspired by,uh, David Fajgenbaum to do this.
(30:52):
So David is the founder of EveryCure.
He has a remarkable personalstory that is being made into a
movie now.
But he was diagnosed with a raredisease and given very little
time to live and went aboutfinding a drug that could be
repurposed to save his life.
And it saved his life.
And now he's made it his life'swork to continue repurposing
(31:15):
drugs and they're the largest AIdriven platform to repurpose
drugs.
And they helped kick off ourresearch retreat this year,
which was really, really greatto think about, okay, how can we
all be working towardsrepurposing while we're also
trying to find new solutions,
Amanda Whitehouse, PhD (31:32):
right?
So since those medications havealready been demonstrated to be
safe and are already FDAapproved, that's a fast track to
just demonstrating that they'reeffective for other things?.
Yeah.
And
Ilana Golant (31:41):
they're, and they're more often than not,
they're generic.
So they're cheaper.
And already sitting on yourshelf at CVS,
Amanda Whitehouse, PhD (31:49):
is that the reason that maybe that
hasn't been done?
Is it a financial thing where ifwe can't create a new
medication, why would apharmaceutical company devote
the research to repurposing it?
Yeah,
Ilana Golant (31:58):
from a financial incentive standpoint for pharma,
once a drug lose, its, itspatent and goes generic, right?
Like.
There's what's known as a patentcliff and they're not gonna make
as much money.
Speaker 3 (32:10):
Yeah.
Ilana Golant (32:10):
Um, and so that's where repurposing steps in, in
the nonprofit community, youknow, with us, with every cure,
really thinking about how we canadvance these drugs for other
lifesaving purposes.
Amanda Whitehouse, PhD (32:24):
Some of what I've heard about that is a
lot of overlap in medicationsthat are being used for cancer
or cancer research and how thatapplies in food allergies and
other allergic conditions.
Am I correct and if so, can youexplain that a little bit more?
I think a lot of us from theoutside are flabbergasted by
that.
Ilana Golant (32:39):
Yeah, I mean we're, we're looking at
everything from cancer drugs toeczema, drugs, um, diabetes,
metabolic disease.
So it really ranges and we'reencouraging our researchers to
think as creatively as possibleto use AI to generate ideas and
hypotheses that obviously needto be tested.
(33:02):
But we're taking a wide lens andso.
I think all disease drugs arekind of on the table.
There's one drug that weworkshopped at our research
retreat where one researcher putthe idea forth and everyone
universe is like, oh yes,absolutely.
Like, why haven't we consideredthat?
And there's just kind ofunanimity around it.
(33:25):
And.
We're not always going to get toa resounding like, yes, yes,
yes.
But that is what we're thinkingabout.
We're looking at a cancer drugnow as well.
We just don't know where thesolution's going to come from
and so I think keeping an openmind, a creative mind is really
important.
And by the way, it could be acombination of drugs that
ultimately needs to be used andit's not gonna be one drug.
Amanda Whitehouse, PhD (33:49):
Right.
So many bodily systems areinvolved with food allergy, so
that would make sense.
It's so complex.
You mentioned that there aremultiple gut microbiome
approaches that you're workingon.
Can you share with us thespecifics?
I know one of them is one thatpeople love to talk about fecal
matter transplant.
Ilana Golant (34:05):
Everyone likes to talk about poop.
Um,
Amanda Whitehouse, PhD (34:08):
I do it all day long with the kids I
work with in therapy, so lots ofpotty talk.
Absolutely.
Um,
Ilana Golant (34:13):
so we are funding the first fecal transplant for
food allergy at BostonChildren's.
We have funded two phases ofthat project, and most recently
we added an additional phaselooking at the metabolomics,
metagenomics of that work.
And so the idea with a fecaltransplant is your gut or one's
gut has gone haywire.
(34:34):
And so the best analogy I liketo think of is if our bodies are
computers.
Our body has hardware and it hassoftware updates, right?
Inputs from the environment,food we eat, et cetera.
And so our hardware can't keepup with all the software updates
that have been happening.
And so something has gone wrongin the hardware.
We need to fix the motherboard.
(34:54):
And so if we think of it inthose terms, and the fecal
transplant is really trying toreprogram the gut to get it to a
place where it is.
Less dysregulated and tolerantof the allergens, and we're
seeing really, really promisingresults there.
And as part of that work, we'vealso discovered that there are
(35:17):
various bacterial strains thateither are very low or missing
entirely for food allergicpatients.
So how do we think aboutreplenishing that bacteria?
So in any work that we do,there's like the initial project
that we're funding, but what ifthere's an interesting finding
whether it's intentional oraccidental, we like to follow
(35:38):
those detective clues as welland leave no stone unturned.
So fecal transplant is, isreally interesting.
Fecal transplant.
Is still not widely used as atherapy.
It is only approved for c diffin the US.
it is approved for otherconditions globally.
And so this is the first kind offood allergy, fecal transplant
(36:01):
and it's really, reallyexciting.
There's a symbiotic therapy thatwe're funding at the University
of Chicago, which again is kindof focused on the gut microbiome
and how.
You replenish or repopulate thegut?
One of our scientific advisoryboard members, Marty Blazer, his
whole thesis and has been forlike 30 years, but is now fully
(36:25):
proven and established, is earlychildhood use of antibiotics
leads to onset of various earlychildhood diseases including
food allergy, asthma, autism,and others.
And so the overuse ofantibiotics is real.
It is significant for childrenand adults alike.
And so his book is titledMissing Microbes.
(36:46):
It's been translated into morethan 20 languages.
And you know, I just use that asan example of, that's something
very simple, where reducingantibiotic consumption can help,
like that can help one's gut.
Now.
Right today that we can takeimmediately.
Yeah, exactly.
Or probiotics, right?
(37:07):
So those are things that can bedone immediately.
But I think if you look at thethrough line from early
childhood disease to agingdisease, Parkinson's,
Alzheimer's, we know the gut isimplicated in both.
And then in between, cancer,unfortunately is skyrocketing in
people under age 45 or evenunder age 40.
And so if you look at kind ofthat common denominator all the
(37:29):
way through, it is.
You know, heavily gut andinflammation related.
And so what can we do to changethat environmentally, diet wise,
therapeutically?
It's gonna take a lot of toolsin the toolbox.
It's not gonna be one fix.
Amanda Whitehouse, (37:46):
Absolutely.
And that takes me back to thisidea of, cause and prevention
and as you said, it's been toolong, it's taking way too long
for us to understand this.
But that sounds like one of thebiggest areas of getting closer
to understanding that.
Am I correct with the gutmicrobiome and antibiotic use
and, and compromising the gut atan early age.
(38:07):
Is that a movement toward theultimate question of ending and
preventing food allergies?
Ilana Golant (38:13):
Yeah, I mean, if we knew what the underlying
cause or causes are, we couldaccelerate progress.
There was a recent discoveryaround bile acid pathways or a
specific cell type that one ofour grant recipients, discovered
around specific cells beingactivated.
Right.
We just don't, I, I really don'tthink it's a singular cause.
(38:36):
Right.
It's kind of the perfect storm.
But even within this perfectstorm, we still don't have
enough information on which ofthe storm clouds are like the
most dominant ones.
There are hypotheses that overthe years have been, disproven,
There was a time when wethought, okay, it's a hygiene
hypothesis.
(38:56):
We're just too clean.
As a society that is no longerthe belief, right?
The gut piece is a veryimportant piece of the puzzle
for sure.
It is not the entirety of thepuzzle.
It's kind of the gut coupledwith environmental exposures,
food production, manufacturingintake, along with many, many
(39:16):
other contributing factors.
And then kind of the actual.
We know what happens inanaphylaxis, right?
But what we don't know is how dowe stop it?
And so from my perspective as amother, we can all live with
food allergies.
As long as we can get rid of theanaphylaxis piece.
We can all live with hives, wecan all live with vomiting,
(39:39):
diarrhea, et cetera.
That is not what keeps me up atnight.
It's really the anaphylaxis thatkeeps.
Food allergy parents up atnight.
And so if we can figure out whatmechanisms can be turned on or
off and what the causes of thosedifferent mechanisms are, then
we're one step closer.
Amanda Whitehouse, PhD (39:58):
That's a great point because short of a
cure, that's the problem.
It's the life-threatening natureof this disease.
None of us want our kids to missout on certain things, but we
can avoid pretty well and stillhave a full life and find
alternatives.
So on that note could you saymore about the research
confirming that comorbidity ison the rise, not just the number
of food allergens.
(40:20):
What else are they noticing whenthey look at the data?
Ilana Golant (40:23):
So the population data is still quite limited.
We don't have a patientregistry, for example, like if
you look at other diseasestates, we're missing the basics
in food allergy.
We don't have good reliablediagnostics other than the food
challenge, which.
Yeah, we already touched on, wedon't have a patient registry
(40:44):
that actually collects the datain a way that is easily usable,
searchable, analyzable.
Um, not sure that's a word, but,uh, but, but these are the
things that we lack, right?
And so we're starting alreadybehind and as a disease state,
(41:05):
as a community, as a researchpiece.
And so.
We're kind of trying to leapfrogthat and figure out, okay, how
can we get to more answers?
And one, another area that we'rereally interested in is
biomarker discoveries.
So if you talk about asthma, forexample, 30 years ago, you would
say, kid has asthma.
We now know there are differentsubtypes of asthma and.
(41:29):
You treat those typesdifferently based on the
phenotype of the patient.
We don't know anything aboutfood allergy, right?
Is food allergy one disease?
Is it.
20 is each food its own disease.
We have this, speaker at oursummit who mentioned breast
cancer we now know is more than20 diseases.
(41:50):
Is food allergy more than 20diseases?
Is it one disease?
Can we start to createbiomarkers.
And so that's something thatwe're really interested in as
well, is how do we start toidentify different patient types
and subgroups, and what doesthat tell us about what causes
the disease?
How can we prevent it?
Not only in the next generation,but how do we prevent the next
(42:11):
allergen from forming, right?
Most kids aren't immediatelyallergic to 10 foods.
You kind of learn about it foodby food.
Often, rapidly within months ofeach other, but sometimes it
takes years and times, you know,everything is fine or at least
stable, and all of a sudden youdevelop a new allergy.
Why?
(42:32):
These are all unknowns and we'retrying to answer as many of them
as we can.
Amanda Whitehouse, PhD (42:38):
So many questions.
With other medical concerns howdoes a patient registry happen?
Why is there not one for foodallergies?
Ilana Golant (42:47):
I don't know.
I mean, I wish there had beenone for the last 15 to 20 years
because you could really buildthat data.
Normally it comes from thenonprofit community, but in the
food allergy community, kind ofthe existing nonprofits, 10 or
15 years ago, didn'tself-organize to create a robust
registry that we could allbenefit from.
(43:08):
Why?
I don't know.
Amanda Whitehouse, PhD (43:09):
Okay.
Another piece of this that I'mcurious about is funding.
I mean, you mentioned that if,if.
Everyday person or familiesdonate, all of that money will
go to the research.
Where's the motivation comingfrom to fund what you're doing?
Families?
Is it, is
Ilana Golant (43:22):
it all mostly that first and foremost, it's
families.
Families who want.
Want to make a difference, atvarying levels and size of
donation, obviously, but it'sfamilies.
Amanda Whitehouse, PhD (43:37):
That's amazing.
Ilana Golant (43:38):
Yeah.
Amanda Whitehouse, PhD (43:39):
Are you matching financial investors
with people who are potentiallydeveloping treatments as well?
Okay.
Okay.
So that's what happens at thesummit.
Ilana Golant (43:47):
Yeah, part of the summit is really giving a
platform to investors andcompanies to meet each other,
match-make, and, hopefully growinvestment in those companies
because they're a reallyimportant part of this
ecosystem.
Pharma, big pharma is generallynot.
Interested not invested in foodallergy at these early stages.
(44:09):
There are some exceptions tothat, but by and large it is
happening in the biotech world,that is not happening in big
pharma.
And so for us, we're reallyfocused on how do we surface
those companies.
We've had 40 companies fromaround the world over the past
few years present at oursummits.
Some of which are exclusivelyfocused on food allergy, others
who have really importantadjacent t ools or expertise
(44:34):
where it can be applied to foodallergy.
And so for us, it's really kindof creating that platform for
the companies and the investorsto meet and hopefully connect.
Amanda Whitehouse, PhD (44:46):
That's amazing.
I just have to say again,there's so much innovation
happening.
It's an exciting time for thefood allergy world and all of
these new treatments andmedications that are coming out.
But to me, what you have done isso innovative to just create
that space for funding projectsand matching researchers and
investors and getting thecommunity involved.
I just want to thank you forthat because it really is so
(45:06):
different from what a lot ofother people are out there
doing.
Ilana Golant (45:10):
That's, yeah, no, we tried to break the mold and I
think we've done that quitesuccessfully and it's just
really exciting to see how muchmomentum we're gaining and
there's now increased interestand increasing public
conversation around food allergyas well.
Amanda Whitehouse, PhD (45:28):
And that's a piece that I wanted to
come back to.
You mentioned that severaltimes.
We have a great community,right?
But what's important is to getoutside of that community, like
you said, with your Nickelodeoncampaign, getting other kids and
targeting information to them.
Ilana Golant (45:41):
We really need to reach outside the community to
affect change.
At this point, the food allergynumbers are so high that
everyone knows someone affectedby food allergy, the way they
know someone affected by cancer,sadly, like they're in the same
place in that respect.
It's one degree of separation atmost.
I would like for food allergy toget the same level of attention,
(46:05):
seriousness, interest as cancerdoes outside the community.
And people are so, you know,rightfully so, obviously
motivated to figure out thecancer puzzle, but if we can
figure out the food allergypuzzle alongside it, or even
earlier in life, I think it willhave clues for the cancer puzzle
as well because of this kind ofgut inflammation, common thread.
(46:28):
Yeah.
Amanda Whitehouse, PhD (46:28):
Could that be a key to increasing that
motivation?.
Why, why do people care so muchmore about cancer than food
allergies?
Ilana Golant (46:35):
I think it's been the storytelling around the
disease.
We have donors whose kids are intheir late thirties, right?
And so the idea that a39-year-old and my 9-year-old
are kind of sitting in the sameplace is A: unacceptable, and B:
leaves me speechless becausethat is not the case in cancer,
(46:56):
right?
In 30 years we've made huge,huge strides in cancer research.
But that kind of comes back tothe storytelling of like, how do
you get society writ largeinterested in the disease,
involved in the disease, andkind of go from there.
Amanda Whitehouse, PhD (47:14):
So we can obviously watch and learn
all the videos and learn aboutyour work and follow along.
We can donate to you, right?
And, and, and support theseprojects.
And then how can we, as everydaypeople do what you just said and
share and spread the word?
Ilana Golant (47:30):
Volunteer, right.
I mean, we're, we're so gratefulto and reliant on food allergy
families who volunteer theirtime, their effort, their
professional skill sets, but tospread the word in their
communities about the importanceof food allergy as a disease and
that it is a, this is a solvabledisease.
It is a solvable problem.
(47:51):
It is perhaps more so thancancer, but it has really
suffered from a lack ofinvestment and attention.
And so if we can get theattention where it needs to go
and the investment where itneeds to go.
Yeah.
My hope is to go out of businessas soon as I can.
Amanda Whitehouse, PhD (48:09):
I, I, I think we would all agree with
you.
You're giving us so much hopewith what you're doing that that
is possible and that isrealistic.
I think sometimes we buy that,um, story that we hear in
society, and I think we kind ofaccept like, okay, food
allergies are just for life andthis is something chronic we'll
always have to manage.
And you didn't accept that.
I love that.
(48:29):
Yeah.
What, what else do you wannashare about what you're doing or
what we should know?
Ilana Golant (48:33):
We've touched on, on so much and, and to your
point, I think we should behopeful.
There is a lot on the horizon tobe excited about.
Food allergy really impedesone's quality of life, not only
for the patient, but for thefamily as well.
And so there's a lot to behopeful and it really takes
everyone to be involved and toaffect change.
(48:55):
So I'd encourage folks to, watchour summit content, volunteer,
donate, get involved.
We're really always very eagerto hear from families and a bout
how they can help theorganization and most
importantly, how we can helpthem.
Right?
What are they seeing?
What are they feeling?
What is the patient experienceand how is that evolving?
(49:16):
And so all of that is incrediblyhelpful to us as we continue to
grow and, and make a difference.
Amanda Whitehouse, PhD (49:23):
That's amazing.
You wrapped it up perfectly, Ithink.
I think we'll leave it at that.
But I wanna thank you so muchfor taking the time to share all
of it with us and share theexcitement and the hope we need
it.
Thank
Ilana Golant (49:32):
you.
Thank you so much.
Amanda Whitehouse, PhD (49:34):
I hope that you're feeling as inspired
as I am after hearing thatconversation.
What the Food Allergy Fund isdoing isn't just hopeful.
It is strategic data-driven andfocused on real results, and it
is powered by people like youand me who want better for our
kids, for our communities, forthe world, and everyone impacted
by allergies.
So if you're wondering how youcan help, here are three action
(49:56):
steps that you can take rightnow.
Number one, donate if you'reable.
Any amount helps because 100% ofthe donations to the Food
Allergy Fund go directly toresearch that is rare and very
powerful.
Every dollar moves us closer toprevention and a cure.
So you can go towww.foodallergyfund.org to learn
(50:16):
more, and you can also easilyfind the Food Allergy Fund on
social media by searching forthe name of the organization.
Number two.
The Fund's recent Summit broughttogether the brightest minds in
allergy research to share theirprogress and findings.
You can watch those sessions andsee what breakthroughs are
happening right now by checkingthem out at the
foodallergyfund.org/summit.
(50:38):
And number three, please sharethis episode.
Help to raise awareness bysharing this conversation with
someone you know who cares aboutfood allergies.
All of us who are invested inthis topic need that hope and
encouragement that real progressis being made.
Thanks again to Ilana Golant forall your work and for joining us
here.
And thank you to everyone forlistening to Don't Feed the
(50:59):
Fear.
the content of this podcast isfor informational and
educational purposes only, andis not a substitute for
professional medical or mentalhealth advice, diagnosis, or
treatment.
If you have any questions aboutyour own medical experience or
mental health needs, pleaseconsult a professional.
I'm Dr.
Amanda Whitehouse.
Thanks for joining me.
And until we chat again,remember don't feed the fear.
I just wanna like scream it from the rooftops, why
is food allergy skyrocketing?
Why is there very limitedinterest.
Why is there a limitedinvestment?
Why are we just asking thesequestions now?
When the numbers have beenskyrocketing for 15 to 20 years,
this didn't happen overnight.
The food allergy epidemic hasbeen growing and growing and
(00:22):
it's now reached epidemiclevels.
And the irony is, although it isat epidemic levels from a
population standpoint, from aninvestment standpoint, it's like
a rare disease.
So it's an oxymoron, right?
It's like we're effectively arare disease and if you are
classified as a rare disease,you're actually able to seek
certain funding from thegovernment and other
(00:43):
philanthropies that we don'teven qualify for.
So we kind of, we fall inbetween in, in many other ways
as well.
Speaker (00:52):
Welcome to the Don't Feed the Fear podcast, where we
dive into the complex world offood allergy anxiety.
I'm your host, Dr.
Amanda Whitehouse, food allergyanxiety psychologist and food
allergy mom.
Whether you're dealing withallergies yourself or supporting
someone who is, join us for anempathetic and informative
journey toward food allergy calmand confidence..
Amanda Whitehouse, PhD (01:14):
Welcome back to a new season of Don't
Feed The Fear.
I appreciate you listening somuch and I'm so excited that it
is summer and time to move intoa really exciting topic.
We are going to be talking aboutchoices, and choices bring us
hope.
They bring us a sense ofcontrol.
They can also sometimes.
Bring a little bit of stressabout making the correct choices
(01:37):
or the idea that there is onecorrect choice.
So my goal this season is tohelp you to learn about options
that are out there, to help youto navigate the social emotional
impact of those choices andthose possibilities, and to help
you digest the rapid changesthat are happening within the
food allergy world.
(01:57):
I've got a great list of guestslined up for you.
I'm pretty sure we're gonnaextend far past the summer into
the fall, with all of the greatpeople who have agreed to come
on and talk to me about suchimportant things.
But I really wanted to starttoday by bringing you a guest
with not just a great story, butsomeone who.
It's doing amazing things tochange the landscape of food
allergy research.
(02:18):
There are a lot of people outthere doing great, great work,
but very few who are buildingsomething as ambitious and as
impactful as the food allergyfund.
The woman behind it.
She's not a doctor or aresearcher.
She's the mother of a child withfood allergies, an individual
living with food allergiesherself, an attorney, a former
marketing and PR executive, andgovernment official with the US
(02:39):
Department of Treasury.
And what she has managed tocreate with that unique
background is a global movementthat's funding the very people
who are on the front lines offinding a cure for allergies.
I want you to meet Ilana Golantbecause I think it's important
to see what's possible when youblend, passion, your unique
skillset as an individual and abig picture vision.
(03:00):
She's bringing scientiststogether in the Food Allergy
Fund.
She's bringing funding toprojects that really matter, and
she's doing it in a way that'scollaborative, transparent, and
completely mission-driven.
So in honor of World AllergyWeek, I'm honored to bring you
this conversation, whetheryou're a food allergy parent, a
researcher, a policymaker, oranyone who is impacted or cares
(03:21):
about this growing epidemic, youare going to be so excited to
hear about the amazing work thatthe Food Allergy Fund is doing.
I want to thank you so much forbeing here.
Ilana Golant is the founder ofthe Food Allergy Fund doing
amazing things and creatingamazing innovations in the world
of allergy, and I'm so excitedto hear the latest.
Ilana Golant (03:40):
Thank you so much for having me.
Excited to be here.
Of
Amanda Whitehouse, PhD (03:42):
course.
I would love for you to start,if you don't mind, telling us
the story that amazes me abouthow one day you woke up and
decided to take on this projectthat you have created.
Ilana Golant (03:55):
Yes, it was my New Year's resolution after months
of frustration as a mother,first and foremost, and we were
living in New York.
My daughter was first diagnosedwith food allergies.
We moved to dc.
We were seeing top doctors inboth cities who were giving us
polar opposite advice, and itwas reminiscent to me of.
A children's book that I love.
Choose your own adventure.
And it's one thing to chooseyour own adventure in a book.
(04:16):
It's a totally different thingas a parent to choose your own
allergy adventure.
And that's what it really feltlike to me that I was left there
kind of.
Struggling to decide what to dowith my tiny 13 month old.
Do I expose, do I not exposewhich foods, which foods to
avoid?
And so I had more questions thanI had answers, and that really
(04:37):
set me on my mission.
I am a lawyer by training, so Ilike to ask questions and do my
research and kind of figure itout.
And so what I realized is thatresearch into food allergy has
been grossly underfunded, evenas the population numbers have
skyrocketed.
And so after months offrustration and trying to figure
(04:58):
out, okay, well what can I dothat about this?
I can't go to medical school atthis point in my life, although
I guess it's never too late.
What can I do to reallyaccelerate research funding and
find answers?
Not only for my daughter, butfor everyone living with food
allergies.
And I myself developed foodallergies in the last two years
as an adult, and we're seeingmore and more adult onset food
(05:19):
allergy as well.
So I'm in it for my daughter.
But I live it kind of from, fromdifferent directions.
My daughter's allergic to nearly10 foods.
Um, I'm allergic to now multiplefoods as well, and it's.
Really challenging.
And every day it feels like,well, maybe we'll develop
another food allergy.
And it's interesting, in thefive years that I've been doing
this work, the younger thechild, the longer the list of
(05:44):
food allergies.
And this is anecdotal, I'd loveto confirm what I'm seeing
anecdotally.
And so much of our work comesfrom the patient experience,
what families communicate to us,what's on their minds, The
families are the early detectionsystem, right?
Uh, before it gets to theresearchers, it's the families
who are managing the patients,,who are managing this on the
(06:04):
front lines and can really tellus where, where are we headed
directionally.
And unfortunately, we're notheaded in a good direction.
You know, food allergy numberscontinue to skyrocket with no
end in sight.
You know, most recently Iactually had an anaphylactic
reaction during my daughter'sfood challenge.
Um, and this was about a yearago, right before our summit
(06:27):
last year, and I had no reasonto think I was allergic.
So we were at a food challengeand it was a Friday afternoon
and she was doing well and myeyes were itchy, watery, and I
thought, oh, it's a Fridayafternoon.
I'm tired.
It happens.
Um, I didn't say anything.
(06:47):
'cause you know, as a mother youjust focus on your child and she
said, mommy, you really don'tlook good.
And I said.
What do you mean?
And she says, you need, youshould go look in a mirror.
So I went to the bathroom.
I did not look good.
Um, I took a Zyrtec at theallergist's office and then it
got progressively worse.
(07:07):
And I am grateful to say mydaughter passed the challenge.
I brought her home and I tookmyself to the emergency room,
and it took me three hours to beseen.
And to get treatment.
And there I was, someone whoknows what allergic reaction
looks like.
I could advocate for myself.
(07:28):
And I was at the best hospitalin New York City, right?
So I had access to medical careand I was fighting with the ER
team to be admitted, to betriaged, to get steroids that I
desperately needed.
And I kept getting dismissed.
It's not a big deal.
This is something else.
Everything from quote, a gnarlycase of pink eye to a virus to
(07:53):
anything.
I was like, no, no, no.
I know about food allergies.
I need to be treated now, andthe fact that it took me three
hours to get what I needed whenwe know it can be a matter of
minutes.
Sadly that's where we are interms of the awareness level.
I hear this unfortunatelytragically, that so many
(08:15):
children get admitted to the ERand they are misdiagnosed.
Call it gaslighting, call it, Imean, this is your professional,
wheelhouse, but it's, it wasreally stunning to me.
And so at our summit last year,I ripped up my remarks that I
had written, and I talked allabout this experience and
(08:36):
actually showed pictures ofmyself, like with my eyes
swollen shut.
I was completely unrecognizable.
And quite a few people said tome, you're so brave to show
those pictures.
And I said, no, I'm not Everyoneneeds to see the face of
anaphylaxis because it is adisease and it has really
(08:56):
serious consequences.
And so we need to impress uponpeople how, how serious it is
and how we need education acrossthe board.
Amanda Whitehouse, PhD (09:07):
Oh gosh.
I'm so sorry that that happened.
I'm sure people will be curious.
Did you trace it back tocontact?
Do you think you touched theallergen she was ingesting and.
Touched your eyes.
Yeah, I think I must havetouched
Ilana Golant (09:17):
my eye.
Maybe I touched my mouth.
I certainly was not sittingthere eating it, w hich is also
what makes it so scary that itwas, whatever quantity it was,
it was minimal.
Speaker 3 (09:26):
Right.
Ilana Golant (09:27):
Um, but it was.
It was quite potent.
I've developed a few otherallergies and the other ones
that I've developed I think arebecause I cut them out of my
diet because of my daughter.
And so I hear that so often andI would encourage parents to.
You know, not to cut things outof their diet because we do see
adult onset food allergy just bynot maintaining a food in one's
(09:49):
diet.
And for me as a mom, I couldn'tbring myself in the early years
to eat something that couldpoison my daughter.
And so I just couldn't eat it.
And as time went on, I didn'treally want to eat it, and then
I just stopped a nd went yearswithout eating foods.
(10:09):
And that was, you know, amistake for my own food allergy
development.
But it's what I had to do formyself as a mother.
So it's always a cost benefit.
We, we all carry the mental load
Amanda Whitehouse, PhD (10:21):
it's one of those things, it's so much
easier said than done.
Keep it in your diet, keep it inyour other kids' diet, and be
just horribly, ridiculouslyanxious all the time.
You know, just.
It's so simple I was the sameway, but, but thank you for
making that point because I'msure there are people out there
who don't realize that yet and,and need to have that reminder.
I would love your perspectivewith as much knowledge as you
have and as much as you doveinto it about the trends in
(10:43):
funding food allergy researchbeing underfunded, and if you
have insights into why that is.
Ilana Golant (10:48):
That's the million dollar question.
Food allergy, there's thisinverse relationship between the
size of the patient populationand the amount of funding that
it receives.
Whether you look at federalfunding or pharma interest or
institutional investor interestin any of those spheres, there's
a significant mismatch betweenthe numbers.
(11:08):
The investment dollars.
And that is really not true inany other disease state.
And I think that is why wereally need to advocate for
awareness of food allergies as adisease.
And the way that you solvedisease is through research.
I think food allergyunfortunately has been, you
know, labeled helicopterparenting or a lifestyle choice,
(11:30):
or you're just anxious aboutfood.
I mean, I can't, I'm sure you,you know, as a mother you've
heard every version of foodallergy.
Uh, and, but the real versionand the most important version
is that this is a disease,right?
That we don't have control over.
We did not give our children.
Our children unfortunately, areliving with an invisible
(11:52):
disease.
It's invisible to the world, butto them it is hyper visible 24 7
on their minds.
On the minds of us as parents aswell.
Amanda Whitehouse, (12:02):
Absolutely.
And you made a good pointearlier that, before it has time
to go through the researchprocess and be validated
statistically, we know.
The people who are living withit.
We know.
In your case a huge example ofthat is, I know this is going
on.
I know this is a need.
I know there's not enough moneygoing toward it, so I'm gonna
take that into my own hands, coming from the ground up, from
(12:24):
the people who are living itYes.
Absolutely.
Yeah.
So thank you for doing that.
You said, I was a lawyer, butyou had quite a bit of
professional experience cominginto this, and so I think of
what you've done and I think howcould any person just think, oh,
I'm going to do this.
And what skills might benecessary.
And what did you pull in fromyour other professional
experience that allowed you toknow where to start taking
(12:47):
something like this on?
Ilana Golant (12:48):
Yeah, I mean, I've had a pretty varied career and I
think I've drawn on everyprofessional experience in my
work with the food allergyfunds.
So I started my career as alawyer.
I worked in the government, atthe treasury department at the
height of the financial crisis.
So thinking about how do yousolve problems that are
seemingly unsolvable, from alegal standpoint from a
communication standpoint.
(13:09):
I then worked in media and PRfor a decade and it's, it's the
storytelling part of it, right?
It's how do we tell the foodallergy story outside the
community and, I focused a lotof my work in the media world,
whether it was representingclients or producing content for
CNBC and other brands within theNBC Universal family.
(13:31):
I.
How do you tell that story tothe news consumer?
It's the same kind of skill set,right?
How do we tell the story?
How do we raise awareness in themost kind of highest impact way
to move things forward?
So drawing on all those skillsets and.
I worked in sales and, you know,fundraising is really important.
So if I'm raising money from, apremium advertiser, you have to
(13:54):
craft the pitch and we needmoney to fund research.
And what makes our structure sounique and has been so important
to me since day one, is that ahundred percent of donations go
directly to research.
And that really sets us apart.
From the rest of the foodallergy community where our
board, you know, takes on ouroverhead expenses.
So any family, whether they'regiving$10 or a thousand dollars,
(14:17):
that money is going to researchand that is critically important
to our mission, to our mindset,because we are all families,
we're all in this together.
Amanda Whitehouse, PhD (14:27):
On that note though, you left your
corporate positions, yourprofessional positions to do
this full time, right?
So how can you talk about that?
That was a big leap of faith foryou.
I.
Ilana Golant (14:37):
Yeah, and it was my side hustle at the beginning
while having other full-timeroles, but my full-time passion.
And so it's so exciting andgratifying to be able to bring
my professional lives andpersonal lives together.
It is truly the best job I'veever had.
The most exciting, the mostchallenging, the most impactful,
(14:58):
and it's.
I've had to learn a newlanguage, right?
Learning science is likelearning a new language,
learning a new ecosystem, um,earning the trust and
credibility within a totallydifferent industry with
incredibly smart, talented, youknow, researchers, the
scientific community and otherpartners that we work with.
So it's intellectuallychallenging as well and just so
(15:21):
gratifying to be able to tell mydaughter at the end of the day,
okay, I worked on food allergiesall day long.
Amanda Whitehouse, PhD (15:27):
I'm so curious what she thinks of your
work.
Ilana Golant (15:29):
Yeah, I mean, I think she is quite proud.
She spoke at the summit for thefirst time this year, which was
really wonderful to see.
And she talked about, her foodallergy journey, right?
How she wants to eat at abirthday party or eat at school,
eat at a restaurant.
I mean, the list goes on.
And how she is grateful for FAFand for science and really, she.
(15:53):
Loves FAF.
I mean, she once drew a portraitof different members of our
family and drew portraits,right?
Hair eyes, you know how youwould normally draw a portrait.
And then she got to drawing meand she drew the FAF logo
Speaker 3 (16:09):
Nice.
Instead of your face.
Ilana Golant (16:11):
Instead of my face.
Um, and so that was very, verysweet.
Aw, that's amazing.
Amanda Whitehouse, PhD (16:19):
Would you talk about what her
experience has been like
Ilana Golant (16:21):
We have had instances of bullying and k ids
can be mean very sadly.
I think in general, foodallergies make our kids more
resilient, more empathetic, morecompassionate.
So there is a silver lining.
I think they have to beresponsible at a young age, more
mature, at a younger age.
So that is the silver lining.
The flip side is that I.
(16:42):
Unfortunately kids are bulliedfor food allergies and there are
all sorts of studies that shownearly the majority of kids have
had a bullying incident in theirlives.
And you know, my daughter musthave been two and a half years
old and she was on the swings atthe playground and she had just
learned to pump her feet so shecould go on the big swing and
(17:03):
not go in the baby swing.
And so she was on the big swing,so excited that she could
finally pump her feet swing onher own.
And this other girl who wasabout a year older, but at the
same school as her, walked up toher un, provoked and said, why
are you on that swing?
You have allergies.
You should be in the baby swing.
(17:24):
She was too young to fullyunderstand it, but I as a mom
felt it viscerally.
And I, and I called the girl'smother that evening.
She was not at the playground.
She was with a caregiver.
So I called the mother and Isaid, look, this happened at the
playground, and I just want youto understand how.
(17:45):
Difficult food allergies arethat it is not a joke.
I mean, we see this in popculture all the time.
Unfortunately, food allergiesare the butts of many jokes,
including Saturday Night Live,among others, and had this
conversation with her and Ithought that it would really
lead her to apologize, to seethings differently.
(18:07):
And sadly, it led to her disinviting my daughter from her
daughter's forthcoming birthdayparty, and so it kind of went
from bad to worse.
And I know from so many familieswhat it's like, right.
In terms of their social lifesports teams, schools.
Unfortunately, everyone has someversion of that story where k
(18:31):
ids generally can be mean andthey don't understand it.
For the kids who understand itand are compassionate and
inclusive, it is remarkable andthose are really wonderful
friends and friendships to, tonurture and cherish.
Amanda Whitehouse, PhD (18:45):
It's a horrible story.
I'm so sorry for you as a mom.
I t's the best why, right?
To protect our kids from thesethings and not only to address
the medical side.
you're interested in the mentalhealth side of it too, To bring
that big picture in is, is awonderful starting point.
To address all those things.
How do you start?
How do you undertake this?
Once you decide you're gonna doit and you set your New Year's
(19:07):
resolution?
Ilana Golant (19:09):
Yeah, so I mean my first, I assembled our
scientific advisory board.
I drew up a wishlist of who arethe best and brightest minds in
food allergy and adjacentfields, who should be around the
proverbial table, thinking aboutwhere our money should go,
because I am not a doctor, I amnot a scientist, and I want to
make sure that we create acenter of excellence that can
(19:31):
really guide us in.
Where's the highest impact useof our dollars?
And so in assembling thescientific advisory board, we
have everyone frommicrobiologists to psychology,
to chemical engineering,environmental health, immuno
biologists, clinicians, you nameit, because we want this
multidisciplinary perspectivefocused on the problem.
(19:54):
Food allergy is not going to besolved with one magic solution.
I mean, that would be the dream.
That is not the case, right?
And so hopefully one day we worktowards a cure, but that cure is
going to be a combination ofapproaches, disciplines,
treatment, therapeutics,prevention, strategy as well.
(20:15):
And so kind of by forming thisscientific advisory board from
day one.
And I made a wishlist ofinitially 15 names, and I just
decided to aim high, right?
Like, go big or go home.
I'm just gonna go for the bestand see what happens.
And I cold called them and 14outta 15 said, yes.
(20:35):
We so desperately need this.
We need the research funding, weneed the multidisciplinary
collaborative perspective.
So that was kind of the firststep.
And then since then, it's reallybeen focused on how do we source
the best research projects, thebest scientists.
Our core mission is to fundresearch.
We also serve a really importanteducational purpose.
(20:57):
We host an annual summit.
In New York every spring wherewe bring together about 200
people from all parts of thefood allergy ecosystem.
So doctors, scientists fromaround the world, CEOs of early
stage therapeutic companies,early stage consumer tech
companies, and advocates andinvestors, media, right?
(21:17):
Everyone who needs to beinvolved in this discussion.
And we.
Record all of our summits andthen we make those recordings
available on our website.
So I encourage, your listenersto take a look at our website
and see not only this past year,year summit, which took place in
April, but going back through 10summits that we've done over the
(21:37):
last five years.
It's an incredible.
Repository of information,research, ideas, and I think
most importantly, hope andinspiration, right?
I think people leave the summitevery year and they tell me,
wow, I'm so hopeful because asparents, there's been so little
progress over the last 20 yearsas food auditories have
(21:58):
skyrocketed, and I'm veryimpatient, hopefully in the best
possible way, but it's.
Enough already.
Like we, we need to makeprogress.
And so our summits are reallyfocused on showcasing the
innovation, the progress that ishappening in the community, much
of which we're funding, but alsothings that we aren't funding
(22:19):
that we think are reallyimportant, contributions to the
field.
Amanda Whitehouse, PhD (22:22):
We can say it again later, but for
people who want to go find itright now, it's food allergy
fund.org.
Right.
Very easy to find.
Um, and so yes, let's dive inbecause you're just coming off
of your most recent springsummit.
So where do you wanna starttelling us what you shared and,
and what we'll find as we siftthrough the videos from the
event?
Ilana Golant (22:41):
Yeah, I mean the summit was terrific.
There was a range ofpresentations, so we actually
kicked off the Summit day with aPSA that we co-branded and
co-produced with Nickelodeon,which has been really exciting.
It's air, it aired across allNickelodeon platforms during
May, food allergy awarenessmonth, and across billboards in
Times Square and Union Station.
(23:03):
And so it was a really kind ofdrawing on my media hat targeted
at the children, right?
How do we communicate to kidsabout the kids in their
classroom?
The average classroom now hastwo kids with food allergies.
That is a startling number.
And so we need kids thinkingabout this first and foremost.
Uh, not to take us off topic,but my daughter had a reaction
(23:26):
at school recently to a non-fooditem and the kids immediately
recognized it as an allergicreaction and the adults in the
room did not.
And that was really telling tome that these kids are growing
up with food allergy,unfortunately, as part of their
daily lives, their daily socialcircles.
(23:49):
And so they figured it outbefore the adults did.
Wow.
Um, so which also kind ofunderscores why we're so excited
to have had.
The partnership of Nickelodeonin working with us and, and
co-branding this PSA.
So that was a really fun andexciting way to kick off the
day.
And then we had, earlier in theweek, right before the summit,
(24:10):
we hosted the first everresearch retreat.
And the research retreat wasreally meant to bring the best
and brightest thinkers into aroom together to come up with
new ideas.
And I said to them in my openingremarks.
Only half jokingly, we're gonnado this escape the room style,
right?
You're here with us in New Yorkbrainstorming, but we really
(24:33):
expect that you're going to comeup with new, innovative,
collaborative projects comingout of this retreat.
And the ideas flying during theretreat it was incredible.
And since the amount ofengagement, creativity, and
collaboration that has emerged,so as part of the summit we.
Highlighted a little bit of whathappened at the retreat and
(24:54):
tried to bring that magic tolife to the broader audience.
So that was incredible.
And we had a series ofpresentations by early stage
companies from around the world,from the uk, from Australia,
from Germany, and across theUnited States, talking about
everything from analyzing yourbreath for gut health.
(25:15):
To an inhalable epinephrine, toa new version of Xolair to the
interaction between mold andfood allergies.
So just a really wide range ofcompanies and business models
and new kind of infant formulathat takes out the allergenicity
of milk, which 20% of infants inthe US cannot consume cows
(25:37):
based, milk formula.
And so this is a formula thatsimulates kind of.
What it would be, but withoutthe Allergenicity, which is
pretty incredible.
So a wide range of really cooland interesting companies.
And then we had researchers fromacross the country, across
disciplines present.
(25:57):
We unveiled three projects thatwe're funding, one of which is
the first AI predictive modelfor food challenges.
So, you know, as parents, weknow how anxiety inducing the
food challenge is for.
The parents and for the kids asthey get older and kind of more
cognizant.
I mean, I remember the firstfood challenge that my daughter
(26:18):
was really aware of.
She must have been around fiveyears old.
Until then, she kind of didn'treally understand what was going
on, but at five, she suddenlygot very upset with me.
I mean, totally reasonably and,and to be expected, but like,
mommy, why are you doing this tome?
You told me I can't have this.
That's dangerous.
How could you do this to me?
And so, you know, there's thattrust between a parent and child
(26:42):
that the food challenge reallychallenges.
And so I.
We are funding the first AIpredictive model, uh, at the
Teknion to look at all of thefood challenge data that is
available, as well as certaindata sets that we have worked on
in collaboration with CincinnatiChildren's Hospital to start to
predict food challenge outcomesand take the guesswork out of it
(27:05):
for both the doctor and thefamily and the early results.
You can watch the video on ourwebsite.
It's.
Truly remarkable, but alsounderscores our interest in
bringing AI and other noveltechnologies into the food
allergy sphere.
Um, another study that we sharedis looking at the level of
(27:26):
comorbidities with foodallergies.
So I mentioned earlier, youknow, anecdotally again, like
what do we hear on the frontlines?
Well, we hear the younger, thekid, the longer the list of
foods.
But we also hear the longer thelist of other allergic
conditions, whether it's eeo, e,F, PIs, asthma, the list goes
on.
And so we asked the team atNorthwestern, which is the only
(27:48):
epidemiological team in thecountry to look at this level of
comorbidity and is our anecdotalsense.
Correct.
And I am sad or happy to reportthat it is correct, right?
Like kids are dealing with moreand more.
simultaneous chronic diseases,like what accounts for that?
And so that kind of ties with athird area that was, a project
(28:13):
in, in the gut microbiome.
And we actually had quite a fewpresenters focused on the gut
microbiome as the commondenominator and what can be done
from symbiotic therapies to kindof infancy and prevention
strategy, but a, a themethroughout the day was
definitely focused on the gutmicrobiome and what is going on
(28:34):
with the gut health of foodallergic kids.
Amanda Whitehouse, PhD (28:38):
Wow.
That's all sides of it.
You're addressing, diagnosis,root cause, preventing
eventually would be the goal andtreating now, which is all
angles that we need to beapproaching it from.
So it does sound very exciting.
What do you think you left withthe most excited about in terms
of timelines.
Will be out there and helpingand making changes soon.
Ilana Golant (29:01):
Yeah.
I mean, science takes time,right?
Right.
So I think in the next three tofive years we'll have really
significant breakthroughs.
We're already seeing.
Improved therapeutics.
We're seeing needle free optionsfor epinephrine.
But in terms of real cuttingedge breakthroughs that are
going to modify the disease, Ithink we're three to five years
(29:23):
out.
Which, is not soon enough,right?
As a parent, I wish it wasyesterday, but on the other
hand, I think we've reallyaccelerated the research
paradigm, the funding, theinterest in it.
And so, it takes a village,right?
And for us, no one wants to jointhe food allergy club, but once
you're in it, it's an incrediblydedicated, passionate, committed
(29:47):
community.
And so I think as a community,we have a lot to be excited
about and hopeful for, butscience takes time.
I wish, I wish we could speed itup and we're doing everything we
can and like I said, using ai,using CRISPR technology.
I mean these are all things thatwe are working into the work
that we're doing.
It was an important part of ourresearch retreat as well.
(30:09):
Another area that we're workingon that is gonna be faster and
really exciting is we're theonly repurposing program for
food allergy in the world.
And what that means is we'retaking drugs that are already
approved by the FDA, so we knowthey're safe and testing whether
they can be repurposed and usedfor food allergy.
(30:30):
So we're already funding tworepurposing studies when at
Mount Sinai and one atNorthwestern.
And we'll be announcing a fewnew repurposing studies.
Later this year.
Um, but that is kind of thefastest way in some ways to get
it in patients' hands.
And I was really inspired by,uh, David Fajgenbaum to do this.
(30:52):
So David is the founder of EveryCure.
He has a remarkable personalstory that is being made into a
movie now.
But he was diagnosed with a raredisease and given very little
time to live and went aboutfinding a drug that could be
repurposed to save his life.
And it saved his life.
And now he's made it his life'swork to continue repurposing
(31:15):
drugs and they're the largest AIdriven platform to repurpose
drugs.
And they helped kick off ourresearch retreat this year,
which was really, really greatto think about, okay, how can we
all be working towardsrepurposing while we're also
trying to find new solutions,
Amanda Whitehouse, PhD (31:32):
right?
So since those medications havealready been demonstrated to be
safe and are already FDAapproved, that's a fast track to
just demonstrating that they'reeffective for other things?.
Yeah.
And
Ilana Golant (31:41):
they're, and they're more often than not,
they're generic.
So they're cheaper.
And already sitting on yourshelf at CVS,
Amanda Whitehouse, PhD (31:49):
is that the reason that maybe that
hasn't been done?
Is it a financial thing where ifwe can't create a new
medication, why would apharmaceutical company devote
the research to repurposing it?
Yeah,
Ilana Golant (31:58):
from a financial incentive standpoint for pharma,
once a drug lose, its, itspatent and goes generic, right?
Like.
There's what's known as a patentcliff and they're not gonna make
as much money.
Speaker 3 (32:10):
Yeah.
Ilana Golant (32:10):
Um, and so that's where repurposing steps in, in
the nonprofit community, youknow, with us, with every cure,
really thinking about how we canadvance these drugs for other
lifesaving purposes.
Amanda Whitehouse, PhD (32:24):
Some of what I've heard about that is a
lot of overlap in medicationsthat are being used for cancer
or cancer research and how thatapplies in food allergies and
other allergic conditions.
Am I correct and if so, can youexplain that a little bit more?
I think a lot of us from theoutside are flabbergasted by
that.
Ilana Golant (32:39):
Yeah, I mean we're, we're looking at
everything from cancer drugs toeczema, drugs, um, diabetes,
metabolic disease.
So it really ranges and we'reencouraging our researchers to
think as creatively as possibleto use AI to generate ideas and
hypotheses that obviously needto be tested.
(33:02):
But we're taking a wide lens andso.
I think all disease drugs arekind of on the table.
There's one drug that weworkshopped at our research
retreat where one researcher putthe idea forth and everyone
universe is like, oh yes,absolutely.
Like, why haven't we consideredthat?
And there's just kind ofunanimity around it.
(33:25):
And.
We're not always going to get toa resounding like, yes, yes,
yes.
But that is what we're thinkingabout.
We're looking at a cancer drugnow as well.
We just don't know where thesolution's going to come from
and so I think keeping an openmind, a creative mind is really
important.
And by the way, it could be acombination of drugs that
ultimately needs to be used andit's not gonna be one drug.
Amanda Whitehouse, PhD (33:49):
Right.
So many bodily systems areinvolved with food allergy, so
that would make sense.
It's so complex.
You mentioned that there aremultiple gut microbiome
approaches that you're workingon.
Can you share with us thespecifics?
I know one of them is one thatpeople love to talk about fecal
matter transplant.
Ilana Golant (34:05):
Everyone likes to talk about poop.
Um,
Amanda Whitehouse, PhD (34:08):
I do it all day long with the kids I
work with in therapy, so lots ofpotty talk.
Absolutely.
Um,
Ilana Golant (34:13):
so we are funding the first fecal transplant for
food allergy at BostonChildren's.
We have funded two phases ofthat project, and most recently
we added an additional phaselooking at the metabolomics,
metagenomics of that work.
And so the idea with a fecaltransplant is your gut or one's
gut has gone haywire.
(34:34):
And so the best analogy I liketo think of is if our bodies are
computers.
Our body has hardware and it hassoftware updates, right?
Inputs from the environment,food we eat, et cetera.
And so our hardware can't keepup with all the software updates
that have been happening.
And so something has gone wrongin the hardware.
We need to fix the motherboard.
(34:54):
And so if we think of it inthose terms, and the fecal
transplant is really trying toreprogram the gut to get it to a
place where it is.
Less dysregulated and tolerantof the allergens, and we're
seeing really, really promisingresults there.
And as part of that work, we'vealso discovered that there are
(35:17):
various bacterial strains thateither are very low or missing
entirely for food allergicpatients.
So how do we think aboutreplenishing that bacteria?
So in any work that we do,there's like the initial project
that we're funding, but what ifthere's an interesting finding
whether it's intentional oraccidental, we like to follow
(35:38):
those detective clues as welland leave no stone unturned.
So fecal transplant is, isreally interesting.
Fecal transplant.
Is still not widely used as atherapy.
It is only approved for c diffin the US.
it is approved for otherconditions globally.
And so this is the first kind offood allergy, fecal transplant
(36:01):
and it's really, reallyexciting.
There's a symbiotic therapy thatwe're funding at the University
of Chicago, which again is kindof focused on the gut microbiome
and how.
You replenish or repopulate thegut?
One of our scientific advisoryboard members, Marty Blazer, his
whole thesis and has been forlike 30 years, but is now fully
(36:25):
proven and established, is earlychildhood use of antibiotics
leads to onset of various earlychildhood diseases including
food allergy, asthma, autism,and others.
And so the overuse ofantibiotics is real.
It is significant for childrenand adults alike.
And so his book is titledMissing Microbes.
(36:46):
It's been translated into morethan 20 languages.
And you know, I just use that asan example of, that's something
very simple, where reducingantibiotic consumption can help,
like that can help one's gut.
Now.
Right today that we can takeimmediately.
Yeah, exactly.
Or probiotics, right?
(37:07):
So those are things that can bedone immediately.
But I think if you look at thethrough line from early
childhood disease to agingdisease, Parkinson's,
Alzheimer's, we know the gut isimplicated in both.
And then in between, cancer,unfortunately is skyrocketing in
people under age 45 or evenunder age 40.
And so if you look at kind ofthat common denominator all the
(37:29):
way through, it is.
You know, heavily gut andinflammation related.
And so what can we do to changethat environmentally, diet wise,
therapeutically?
It's gonna take a lot of toolsin the toolbox.
It's not gonna be one fix.
Amanda Whitehouse, (37:46):
Absolutely.
And that takes me back to thisidea of, cause and prevention
and as you said, it's been toolong, it's taking way too long
for us to understand this.
But that sounds like one of thebiggest areas of getting closer
to understanding that.
Am I correct with the gutmicrobiome and antibiotic use
and, and compromising the gut atan early age.
(38:07):
Is that a movement toward theultimate question of ending and
preventing food allergies?
Ilana Golant (38:13):
Yeah, I mean, if we knew what the underlying
cause or causes are, we couldaccelerate progress.
There was a recent discoveryaround bile acid pathways or a
specific cell type that one ofour grant recipients, discovered
around specific cells beingactivated.
Right.
We just don't, I, I really don'tthink it's a singular cause.
(38:36):
Right.
It's kind of the perfect storm.
But even within this perfectstorm, we still don't have
enough information on which ofthe storm clouds are like the
most dominant ones.
There are hypotheses that overthe years have been, disproven,
There was a time when wethought, okay, it's a hygiene
hypothesis.
(38:56):
We're just too clean.
As a society that is no longerthe belief, right?
The gut piece is a veryimportant piece of the puzzle
for sure.
It is not the entirety of thepuzzle.
It's kind of the gut coupledwith environmental exposures,
food production, manufacturingintake, along with many, many
(39:16):
other contributing factors.
And then kind of the actual.
We know what happens inanaphylaxis, right?
But what we don't know is how dowe stop it?
And so from my perspective as amother, we can all live with
food allergies.
As long as we can get rid of theanaphylaxis piece.
We can all live with hives, wecan all live with vomiting,
(39:39):
diarrhea, et cetera.
That is not what keeps me up atnight.
It's really the anaphylaxis thatkeeps.
Food allergy parents up atnight.
And so if we can figure out whatmechanisms can be turned on or
off and what the causes of thosedifferent mechanisms are, then
we're one step closer.
Amanda Whitehouse, PhD (39:58):
That's a great point because short of a
cure, that's the problem.
It's the life-threatening natureof this disease.
None of us want our kids to missout on certain things, but we
can avoid pretty well and stillhave a full life and find
alternatives.
So on that note could you saymore about the research
confirming that comorbidity ison the rise, not just the number
of food allergens.
(40:20):
What else are they noticing whenthey look at the data?
Ilana Golant (40:23):
So the population data is still quite limited.
We don't have a patientregistry, for example, like if
you look at other diseasestates, we're missing the basics
in food allergy.
We don't have good reliablediagnostics other than the food
challenge, which.
Yeah, we already touched on, wedon't have a patient registry
(40:44):
that actually collects the datain a way that is easily usable,
searchable, analyzable.
Um, not sure that's a word, but,uh, but, but these are the
things that we lack, right?
And so we're starting alreadybehind and as a disease state,
(41:05):
as a community, as a researchpiece.
And so.
We're kind of trying to leapfrogthat and figure out, okay, how
can we get to more answers?
And one, another area that we'rereally interested in is
biomarker discoveries.
So if you talk about asthma, forexample, 30 years ago, you would
say, kid has asthma.
We now know there are differentsubtypes of asthma and.
(41:29):
You treat those typesdifferently based on the
phenotype of the patient.
We don't know anything aboutfood allergy, right?
Is food allergy one disease?
Is it.
20 is each food its own disease.
We have this, speaker at oursummit who mentioned breast
cancer we now know is more than20 diseases.
(41:50):
Is food allergy more than 20diseases?
Is it one disease?
Can we start to createbiomarkers.
And so that's something thatwe're really interested in as
well, is how do we start toidentify different patient types
and subgroups, and what doesthat tell us about what causes
the disease?
How can we prevent it?
Not only in the next generation,but how do we prevent the next
(42:11):
allergen from forming, right?
Most kids aren't immediatelyallergic to 10 foods.
You kind of learn about it foodby food.
Often, rapidly within months ofeach other, but sometimes it
takes years and times, you know,everything is fine or at least
stable, and all of a sudden youdevelop a new allergy.
Why?
(42:32):
These are all unknowns and we'retrying to answer as many of them
as we can.
Amanda Whitehouse, PhD (42:38):
So many questions.
With other medical concerns howdoes a patient registry happen?
Why is there not one for foodallergies?
Ilana Golant (42:47):
I don't know.
I mean, I wish there had beenone for the last 15 to 20 years
because you could really buildthat data.
Normally it comes from thenonprofit community, but in the
food allergy community, kind ofthe existing nonprofits, 10 or
15 years ago, didn'tself-organize to create a robust
registry that we could allbenefit from.
(43:08):
Why?
I don't know.
Amanda Whitehouse, PhD (43:09):
Okay.
Another piece of this that I'mcurious about is funding.
I mean, you mentioned that if,if.
Everyday person or familiesdonate, all of that money will
go to the research.
Where's the motivation comingfrom to fund what you're doing?
Families?
Is it, is
Ilana Golant (43:22):
it all mostly that first and foremost, it's
families.
Families who want.
Want to make a difference, atvarying levels and size of
donation, obviously, but it'sfamilies.
Amanda Whitehouse, PhD (43:37):
That's amazing.
Ilana Golant (43:38):
Yeah.
Amanda Whitehouse, PhD (43:39):
Are you matching financial investors
with people who are potentiallydeveloping treatments as well?
Okay.
Okay.
So that's what happens at thesummit.
Ilana Golant (43:47):
Yeah, part of the summit is really giving a
platform to investors andcompanies to meet each other,
match-make, and, hopefully growinvestment in those companies
because they're a reallyimportant part of this
ecosystem.
Pharma, big pharma is generallynot.
Interested not invested in foodallergy at these early stages.
(44:09):
There are some exceptions tothat, but by and large it is
happening in the biotech world,that is not happening in big
pharma.
And so for us, we're reallyfocused on how do we surface
those companies.
We've had 40 companies fromaround the world over the past
few years present at oursummits.
Some of which are exclusivelyfocused on food allergy, others
who have really importantadjacent t ools or expertise
(44:34):
where it can be applied to foodallergy.
And so for us, it's really kindof creating that platform for
the companies and the investorsto meet and hopefully connect.
Amanda Whitehouse, PhD (44:46):
That's amazing.
I just have to say again,there's so much innovation
happening.
It's an exciting time for thefood allergy world and all of
these new treatments andmedications that are coming out.
But to me, what you have done isso innovative to just create
that space for funding projectsand matching researchers and
investors and getting thecommunity involved.
I just want to thank you forthat because it really is so
(45:06):
different from what a lot ofother people are out there
doing.
Ilana Golant (45:10):
That's, yeah, no, we tried to break the mold and I
think we've done that quitesuccessfully and it's just
really exciting to see how muchmomentum we're gaining and
there's now increased interestand increasing public
conversation around food allergyas well.
Amanda Whitehouse, PhD (45:28):
And that's a piece that I wanted to
come back to.
You mentioned that severaltimes.
We have a great community,right?
But what's important is to getoutside of that community, like
you said, with your Nickelodeoncampaign, getting other kids and
targeting information to them.
Ilana Golant (45:41):
We really need to reach outside the community to
affect change.
At this point, the food allergynumbers are so high that
everyone knows someone affectedby food allergy, the way they
know someone affected by cancer,sadly, like they're in the same
place in that respect.
It's one degree of separation atmost.
I would like for food allergy toget the same level of attention,
(46:05):
seriousness, interest as cancerdoes outside the community.
And people are so, you know,rightfully so, obviously
motivated to figure out thecancer puzzle, but if we can
figure out the food allergypuzzle alongside it, or even
earlier in life, I think it willhave clues for the cancer puzzle
as well because of this kind ofgut inflammation, common thread.
(46:28):
Yeah.
Amanda Whitehouse, PhD (46:28):
Could that be a key to increasing that
motivation?.
Why, why do people care so muchmore about cancer than food
allergies?
Ilana Golant (46:35):
I think it's been the storytelling around the
disease.
We have donors whose kids are intheir late thirties, right?
And so the idea that a39-year-old and my 9-year-old
are kind of sitting in the sameplace is A: unacceptable, and B:
leaves me speechless becausethat is not the case in cancer,
(46:56):
right?
In 30 years we've made huge,huge strides in cancer research.
But that kind of comes back tothe storytelling of like, how do
you get society writ largeinterested in the disease,
involved in the disease, andkind of go from there.
Amanda Whitehouse, PhD (47:14):
So we can obviously watch and learn
all the videos and learn aboutyour work and follow along.
We can donate to you, right?
And, and, and support theseprojects.
And then how can we, as everydaypeople do what you just said and
share and spread the word?
Ilana Golant (47:30):
Volunteer, right.
I mean, we're, we're so gratefulto and reliant on food allergy
families who volunteer theirtime, their effort, their
professional skill sets, but tospread the word in their
communities about the importanceof food allergy as a disease and
that it is a, this is a solvabledisease.
It is a solvable problem.
(47:51):
It is perhaps more so thancancer, but it has really
suffered from a lack ofinvestment and attention.
And so if we can get theattention where it needs to go
and the investment where itneeds to go.
Yeah.
My hope is to go out of businessas soon as I can.
Amanda Whitehouse, PhD (48:09):
I, I, I think we would all agree with
you.
You're giving us so much hopewith what you're doing that that
is possible and that isrealistic.
I think sometimes we buy that,um, story that we hear in
society, and I think we kind ofaccept like, okay, food
allergies are just for life andthis is something chronic we'll
always have to manage.
And you didn't accept that.
I love that.
(48:29):
Yeah.
What, what else do you wannashare about what you're doing or
what we should know?
Ilana Golant (48:33):
We've touched on, on so much and, and to your
point, I think we should behopeful.
There is a lot on the horizon tobe excited about.
Food allergy really impedesone's quality of life, not only
for the patient, but for thefamily as well.
And so there's a lot to behopeful and it really takes
everyone to be involved and toaffect change.
(48:55):
So I'd encourage folks to, watchour summit content, volunteer,
donate, get involved.
We're really always very eagerto hear from families and a bout
how they can help theorganization and most
importantly, how we can helpthem.
Right?
What are they seeing?
What are they feeling?
What is the patient experienceand how is that evolving?
(49:16):
And so all of that is incrediblyhelpful to us as we continue to
grow and, and make a difference.
Amanda Whitehouse, PhD (49:23):
That's amazing.
You wrapped it up perfectly, Ithink.
I think we'll leave it at that.
But I wanna thank you so muchfor taking the time to share all
of it with us and share theexcitement and the hope we need
it.
Thank
Ilana Golant (49:32):
you.
Thank you so much.
Amanda Whitehouse, PhD (49:34):
I hope that you're feeling as inspired
as I am after hearing thatconversation.
What the Food Allergy Fund isdoing isn't just hopeful.
It is strategic data-driven andfocused on real results, and it
is powered by people like youand me who want better for our
kids, for our communities, forthe world, and everyone impacted
by allergies.
So if you're wondering how youcan help, here are three action
(49:56):
steps that you can take rightnow.
Number one, donate if you'reable.
Any amount helps because 100% ofthe donations to the Food
Allergy Fund go directly toresearch that is rare and very
powerful.
Every dollar moves us closer toprevention and a cure.
So you can go towww.foodallergyfund.org to learn
(50:16):
more, and you can also easilyfind the Food Allergy Fund on
social media by searching forthe name of the organization.
Number two.
The Fund's recent Summit broughttogether the brightest minds in
allergy research to share theirprogress and findings.
You can watch those sessions andsee what breakthroughs are
happening right now by checkingthem out at the
foodallergyfund.org/summit.
(50:38):
And number three, please sharethis episode.
Help to raise awareness bysharing this conversation with
someone you know who cares aboutfood allergies.
All of us who are invested inthis topic need that hope and
encouragement that real progressis being made.
Thanks again to Ilana Golant forall your work and for joining us
here.
And thank you to everyone forlistening to Don't Feed the
(50:59):
Fear.
the content of this podcast isfor informational and
educational purposes only, andis not a substitute for
professional medical or mentalhealth advice, diagnosis, or
treatment.
If you have any questions aboutyour own medical experience or
mental health needs, pleaseconsult a professional.
I'm Dr.
Amanda Whitehouse.
Thanks for joining me.
And until we chat again,remember don't feed the fear.
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