October 28, 2025 • 36 mins
This inspiring episode features Devin August Sailer, teen allergy advocate and founder of Safe to Eat, an organization providing Top 9 and gluten free foods to domestic violence and emergency housing shelters in upstate New York.
We talk about what it's like navigating the world with food allergies as a young person, how Safe to Eat was created, and how even the smallest acts of advocacy are important.
Trigger warning: Devin shares a story about a severe allergic reaction. He talks about how infusing his unique sense of humor into these experiences is a part of how he has come to accept them as his reality, while learning from them to prevent future reactions.
This is a great episode to share with teens managing allergies.
Support Devin's work at https://www.safetoeatnow.com/
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.
Devin Sailer (00:00):
since I've had this lifestyle my whole life,
(00:03):
I've gotten used to it.
I've developed strategies I'vedeveloped.
A way to center my life aroundit without it necessarily
limiting my life.
When we talk to kids and when wetalk to food allergy parents, I
think we far too often focus onthe fear and the limitation of
it.
And I think it's the naturalinstinct of food allergy parents
to wanna protect their kids, butalso we can't smother them.
(00:26):
We need to help them andfacilitate their growth as
individuals and find ways tomake life work for their
allergies, not make them livelife for their allergies.
Speaker (00:37):
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 (00:58):
today's conversation is a very inspiring
chat with an amazing youngteenager.
Devin August Sailer is here totell you about the work that
he's been doing as a nonprofitfounder, a legislative advocate
working on changing the laws toimprove food allergy safety in
New York and in the UnitedStates.
Devon lives with 31life-threatening allergies and
(01:19):
has turned his personal healthcrisis into a powerful public
mission.
At 17, he founded a nonprofitcalled Safe to Eat, which brings
allergen aware food to domesticviolence and homeless shelters
across New York State.
Devon says something that Ilove, which is that he's working
so that his voice will help toreshape not only laws but lives
Dr. Amanda Whitehouse (01:38):
Devin, it is so nice to see you again.
We met in Albany early thisyear, and I loved meeting you
and seeing you in action, so I'mso glad to have you here in the
show now.
Devin Sailer (01:47):
I'm absolutely very happy to be here.
It was an honor to meet youthere.
I think we had a great littlediscussion about food allergy
anxiety and the general effectsof more the mental health side,
which I think is sort of underspoken about and
underrepresented in thecommunity.
Dr. Amanda Whitehouse (02:00):
I agree, especially from, younger people
who are the ones living it.
There's a lot of us moms outhere talking about it.
Not as many of us focusing onthe mental health, but
definitely becoming a biggerconversation.
But you are the person and thekind of people that I think we
need to hear from about thatside of things and what's needed
and, and where we need to go.
Devin Sailer (02:18):
I think sometimes the kids, it's a little
embarrassing or perhaps shamefulfor them to speak about these
sort of mental health topics,especially, For the men, they
sort of see it as a weakness orsort of emasculating, and so
that's a stigma that I reallythink programs like this can
help to break down and pave anew path for the future with
this.
Dr. Amanda Whitehou (02:38):
Absolutely.
People like you, being a part ofit is, is the most effective way
for me to do that here on myplatform.
So thank you.
And just in case people aren'tfamiliar with you, could you
introduce yourself to theaudience?
Devin Sailer (02:49):
Well, I'm Devin, August Sailor.
I'm just a boy from upstate NewYork who happens to have 31
anaphylactic food allergies.
And so throughout my life I'vealways struggled with my food
allergies and asthma.
And so really.
A few years ago, I decided thatI wanted to combine my personal
experience with food allergiesand my interest in politics and
(03:10):
government, sort of combine themtogether to see how I could
better the community.
And so that's really led me onthis very interesting course
where I've been to Congress andI've been to the state
legislature many times.
I just came back from Chicago onanother trip that I went to to
speak about food allergies andsuch with Cfar.
And so it's been the honor of alifetime so far,
Dr. Amanda Whitehouse (03:29):
yeah.
Why don't we start with, thefood allergy part.
Tell us about what life is likefrom a young age and, and how
you've, progressed over time asfar as managing that side of
things.
Devin Sailer (03:42):
Well, when you're younger, it's usually not me
who's doing all the work.
I have to give the, uh, kudosand the credit to my mother.
She's single mother, amazingwoman.
She really kept me alive verysimply.
She saved my life on multipleoccasions.
And so when you're in thatyounger era, uh, you certainly
do have a lot moreresponsibility than a typical
seven or 8-year-old.
(04:02):
You're responsible for yourepinephrine, responsible for
your own life, in some sense ofthe work.
So I don't think most seven,eight, 6-year-old kids are
reading food labels.
They're not, uh, obsessing overevery little thing they're
putting in their body.
They're typically putting thingsthat shouldn't be in their body,
like crayons, hands, and soforth.
And so when you're that age,there is that difficulty in it.
But as you progress through theyears, it certainly gets a lot
(04:25):
easier carrying an EpiPen ornephew or some other form of
epinephrine.
It just becomes second nature.
But I do also think as you.
Age into those later teen years.
It can be a little embarrassingto carry it as well as I do
think there is that, you know,hormonal sort of foolish risk
taking that often happens andthat can be a recipe for
(04:46):
disaster.
In my personal life I've, youknow, sort of abstain from that.
But it's absolutely a realityfor many, uh, who are struggling
with this condition.
Yeah.
Dr. Amanda Whitehouse (04:55):
Well, and I was going to say, you seem so
levelheaded, but so do many ofthe teenagers that I know with
food allergies so even thoughyou haven't experienced that,
can you talk about what you'veseen with peers or what you
think is going on when kids hitthat phase?
Devin Sailer (05:08):
On that?
I would just say a watch potnever boils when you're looking
at somebody from afar, theyalways look.
All pristine and perfect, myselfincluded.
But everyone has their, uh, mixups.
Everyone has their flaws.
And so I serve on somethingcalled tag, the Teen Advisory
Group.
And that is an organization fromFARE where sort of older kids
can speak, not necessarily onlyto younger people, but as well
(05:29):
as those of their peers.
And they can give them a littleguidance on the future.
And so I certainly do hear a bitabout partying and so forth and
how that can.
Impact their lives.
I come from an area in rural,upstate New York, we really
don't have many kids who havefood allergies.
But there is one otherindividual at my school who also
has food allergies.
(05:51):
And he's spoken to me a bitabout how it can be difficult,
uh, in social settings.
And it's not so much a shame,but just.
It's a little weird and clunkyto carry around these giant pens
all the time and constantlyhaving to explain them and so
that can absolutely bedifficulty.
Dr. Amanda Whitehouse (06:07):
Yeah.
Have you found that as well,even though like you said,
you've maintained yourlevelheadedness and you're not
into the risk taking but has itbeen challenging for you too?
Devin Sailer (06:15):
I've absolutely had my share of challenges with
it.
Sometimes I forget myepinephrine.
I won't lie.
I won't say that I'm some angelwho has never made a mistake.
I absolutely make mistakes.
I forget my epinephrine fromtime to time, and that can be a
very stressful experience aswell as I'm somebody who
travels.
Uh, I'm very fortunate where I'mable to travel and so when
you're going into differentcountries, when you're going
(06:36):
through airport security, uh, itcan be very difficult to carry
these epinephrines on you.
'cause they may be, I can giveyou an example.
Just a little bit ago when I wastraveling to Chicago, uh, they
man took my epinephrine and theyasked me, what is this?
I briefly explained to him, butwe were three minutes away from
my flight going off.
We had no time to do it.
And instead of putting myepinephrine back in the bin, he
(06:58):
put it in some random bin at theend of the line.
And so if a family member ofmine hadn't caught that, I
would've been without myepinephrine in a city a thousand
miles away from where I live.
And so, especially when you'reoutside of the house, or even
more so when you're outside ofyour I municipality or your
state, it can be a verystressful experience.
Dr. Amanda Whitehouse (07:15):
Yeah.
Tell us how, and I know we werevery young, but how you first
got involved in advocacy and allof the work that you've been
doing.
Devin Sailer (07:23):
Well, so we like to say that I started at age
three, but I think if anyone hasmet a 3-year-old, it's pretty
obvious.
I wasn't giving speeches, Iwasn't doing the complicated
work.
What I was doing is I was.
Uh, going on food allergy walks,we would carry little signs and
so forth.
Really the minor things you cando at that age, but it was
(07:44):
impactful to me.
And so as I matured, as I grewup, I sort of began to develop
an interest in politics andgovernment.
And so me and my family had atalk one day saying, Devin, you
love politics, you lovegovernment.
You also have this unique set ofcircumstances and challenges.
Why not combine these twointerests of yours?
Combine these two circumstancesand try to find a way to improve
(08:06):
the community.
And so then the first thing wedid is we talked to an
organization that I'd workedwith in the past called FARE,
and I was able to go to aCongress at DC and it was called
FARE Courage at Congress.
And it was really my firstexposure to the legislative
process.
And how the government works atan individual to legislator
basis.
(08:26):
And you know, it was absolutelyvery interesting for me.
Did we get everything we wanted?
No, but it's a very complicatedworld up in Washington and so
it's very difficult to meetwith, uh, legislators in
Washington.
So then we decided this issomething I still want to keep
doing, but we can't afford.
And it's just not feasible formost people, including myself,
(08:48):
to go to DC every year to go toDC every few months.
But what is feasible is to go toAlbany every few months where I,
New York, that's our capital,but it's dependent on your
state, obviously.
And so we decided we were goingto go to the state legislature
now and again to advocate fornew,, laws, to advocate for new
sort of.
Projects that we were workingon, and so I worked with food
(09:10):
allergy advocates of New Yorkand I continue to do so, and
it's a great organization.
We work well together and I'mvery proud of the work we've
gotten done.
Dr. Amanda Whiteho (09:19):
Absolutely., That was where I met you was
this year's, food allergyadvocates of New York, advocacy
day in all of your experienceswith this so far, do you have a
proudest moment or biggestaccomplishment that you've been
able to be involved with?
Devin Sailer (09:34):
Oh, absolutely.
For me now, it wasn't just mepersonally, but for Food Allergy
Advocates of New York, I thinkwhat has to be our sort of
crowning achievement is theepinephrine price cap.
So epinephrine costs about$8 tomanufacture with not just the
medicine but the auto injector.
All yet, they could sell as highas$800 and that's every year you
(09:55):
have to replace them.
And so in the state of New York,we got a captain$100 a year, and
that is, I truly did not believeit would get passed I thought
this is a very big ask.
Doesn't matter what party's incontrol, doesn't matter what
type of the individuals in thatparty's in control.
This is a big ask to ask for anystate legislature, but we were
(10:16):
able to get it passed and I wasshocked and I'm very glad that
it happened.
And so that has to be my, andprobably food out, food allergy
advocates of New York's, uh,crowning Achievement, I would
say.
Dr. Amanda Whitehouse (10:29):
I agree and I thank you personally for
that.
And I know, John Terry and ToniTaylor are are.
So influential and, and takingthe lead on that group, and so
thank you to them and everyoneelse for that.
I'm in New York as well.
As I mentioned, very excited forthis one to take place because
as you said, one of the biggest,ways to stay safe is just we, we
keep a pack.
You know, here we keep a pack ofgrandma and grandpa's, keep one
(10:50):
at school, keep one at youroffice and that can add up, but
it's not frivolous.
It's really necessary.
So that is not an option foreverybody the way that the
pricing is right now.
Absolutely.
Devin Sailer (10:59):
And people shouldn't have to choose
between, uh, for instance, rentand uh, epinephrine.
It's just not a situation wherewe should force to be in.
And so that's why this law is sonecessary and so groundbreaking
in my opinion.
Politics, I think people like tosay, oh, it's a game of chess
where you're making veryintricate motions.
I really don't think that it'sreally like a dominoes.
You set'em up, they fall.
(11:20):
They fall short.
That's just how it's, and so I'mhoping that we can have that
domino effect in New York thatspreads northeast, spreads down
south, and then we take it allthe way west.
That's what I hope happens.
Dr. Amanda Whitehouse (11:31):
I agree.
And I, I would have to say tocontinue on your metaphor, I
think the key part of that, thatI am learning from all of you
is.
You have to set the dominoesback up, right, and over and
over.
That's the part that gets thejob done eventually, is just
that persistence and that hardwork.
Devin Sailer (11:46):
And on that a bit, I think I've spoken to the
legislatures a bit on this, andjust if anyone out there is
working in this advocacyindustry, anyone who's working
out there in the lobbyingindustry, what I have repeatedly
heard time and time again isjust the bane of the existence
of legislatures.
Is when people come in with abill one year, it gets rejected
and they propose the exact samebill year after you.
(12:09):
If you don't speak to theopposition, if you don't speak
to the main party and see whatcaused them not to support it,
it's just going to keep havingthe same result.
So you have to modify the bill.
You have to take, uh, differentviews into account, even if it
might water down the bill alittle bit.
I would much rather have awatered down bill than no bill
at all.
Dr. Amanda Whitehouse (12:30):
Right and in time.
Continue to improve upon andmake changes as necessary,
right?
Devin Sailer (12:35):
Absolutely.
Amanda Whitehouse, PhD (12:36):
Devin, I know one of the projects that
you are so excited about issomething that you have created
So please tell us all about it.
Devin Sailer (12:43):
Well, so over the summer I founded a charity
called Safe to Eat, and so thatname comes from myself and some
of the issues that my peoplelike me have.
When it comes to, uh, domesticviolence and homeless shelters,
is that they don't have foodthat is necessarily safe for
them to eat.
And so what we do is wefacilitate the flow of top nine
(13:04):
allergen and gluten-free foodsinto domestic violence and
homeless shelters.
And so over the course of ourjourney, so far, we've had some
pretty big successes.
We've delivered hundreds ofpounds of food to, uh, several
shelters across upstate NewYork.
About the size of Jamaica is thearea that we serve, but we want
to expand.
So we want to, over the next fewyears expand to cover the
(13:27):
entirety of upstate New York andwe'll see where it takes us from
there.
Amanda Whitehouse, PhD (13:30):
How did you get the idea for this?
Devin Sailer (13:32):
Well, the idea really came from, uh, my life is
that, uh, I was never in adomestic violence shelter.
I was never in a homelessshelter.
But, grew up in an area where wehave a high population of
homeless people..
That combined with, uh, mychildhood is my mother works in
midwifery.
We're constantly around women.
(13:53):
We see them at the stores.
They say hi to us and a lot ofthem are in not great
situations.
And so that sort of inspired me.
Those two, uh, factors in myupbringing is to say, what if I
were in that situation wheresomebody like me was in that
situation?
I don't know if I would survivethat.
So somebody needs to be lookingout for these people.
Amanda Whitehouse, PhD (14:14):
Yeah.
Yeah.
We talk a lot about access tosafe foods.
When there are disasters anddisaster relief, bringing safe
and accessible food to people.
But this is another area wherepeople are in a time of probably
the most need of their lives.
Devin Sailer (14:27):
Yeah, I agree a hundred percent.
We're a small team.
It's myself, my family, mymother, and then some people
working with us.
And so we're very proud of whatwe've accomplished and we hope
that we can bring that level ofsafety, that level of comfort to
some of the families that we'vehelped out.
Amanda Whitehouse, PhD (14:45):
Tell me how you start going about
establishing something likethat.
Where do you begin with such abig undertaking?
Devin Sailer (14:51):
Well, the direction we chose is just to
become a nonprofit.
You have to get into contactwith, domestic violence
shelters, homeless shelters, andother facilities to make sure,
hey, we're somebody who exists.
We intend to continue doingthis.
We want to have a fruitfulrelationship together.
How can we get this started?
Sometimes that can be more orless, uh, accomplishments, uh,
(15:13):
depending on who you call andthe time of year.
So, uh, for us, I would argue wewere very successful.
We got our goal and we're justchugging along from there.
I can't tell you the endingphase'cause we're not there yet.
I don't think we ever will be.
Education is a major componentof what we do.
Every time we deliver food.
We have flyers and pamphletstalking about our charity,
(15:36):
talking about why we have toprovide this food.
We're not just people trying tobe good Samaritans.
We're trying to further a causeby saying, this is an issue that
is unaddressed.
Here's how, even if for somereason we're unable to deliver
this food, here's how you cancare for these people.
Amanda Whitehouse, PhD (15:51):
Who are your biggest supporters so far?
Devin Sailer (15:53):
Well, one of our biggest supporters is Vermont
Nut Free, If somebody reachesout to us, obviously we're going
to, uh, speak to them.
We love when that happens, butsometimes you have to give that
initial push and see whathappens.
Sometimes we buy our own food,so if we didn't get as much as
we would've necessarily wanted,we can top ourselves off.
We say, okay, we'll reach intoour own personal finances and
(16:15):
buy X amount of food.
Amanda Whitehouse, PhD (16:16):
That's amazing and a huge shout out to
Vermont Nut Free.
They're an amazing company.
Devin Sailer (16:20):
an amazing, uh, company.
I, in my personal life, we'renot sponsored by them, but we
have partnered with them.
We love their products and it'sso kind of them to work with us.
Okay.
Amanda Whitehouse, PhD (16:30):
Well, it's so heartwarming you know,
as a kid with food allergies,when you can have like a
chocolate bar or a special treatthat is safe for you, it's, it's
so amazing.
But especially in thatsituation,
Devin Sailer (16:40):
That is something we wanna focus on'cause we're
approaching some of what I wouldcall the major food holidays.
When you're in these, uh,situations in domestic violence
shelters, in homeless shelters.
You can't necessarily have thatsame Halloween experience, or
for instance, Thanksgiving,where a lot of it is, for
instance, pecan pies and soforth, as well as into
Christmas.
Depending on your personalculture, depending on where
(17:03):
you're from, where you are inthis country, it can have a
gargantuan amount of nuts or youcan have less.
That's something else we want tomake sure we can address, is
that we don't think that thecircumstances of your birth or
your situation should preventchildren from having a good
holiday season.
I don't think that you shouldhave a less happy holiday season
(17:23):
or life because of thecircumstance of your birth,
that's just wrong.
Amanda Whitehouse, PhD (17:27):
That's such a great point and with all
the winter holidays coming up,it's a great time and a great
reminder to ask people tosupport your organization if
they are moved by this, whichI'm sure they will be.
And the thought of helpingfamilies in those situations is
so awesome.
What can people do to getinvolved and to help and support
you?
Devin Sailer (17:46):
Well to get involved, if you want to get
involved with me, you can go toour website, safe to eat now, or
you can shoot me an email.
My email is also on the website.
I will talk to anybody aboutanything.
If there's anything I could doto help people, I would love to
hear it.
As for how they can get involvedmore broadly.
I think awareness is obviously abig thing that, uh, will assist
my project and other projectslike it across our country and
(18:08):
hopefully across the globe.
But as well as it is just tomaybe have this, inspire you to
donate to a facility in yourarea.
Maybe have this be a reminderthat in more rural areas, even
outside of more metropolitancommunities, there's also a need
for this.
So if you want to make adonation to an.
(18:29):
Uh, domestic violence shelter inyour area.
Amanda Whitehouse, PhD (18:31):
Do you accept financial donations or
food, or are you encouragingpeople to donate more directly
to the facilities?
Only.
Devin Sailer (18:38):
Uh, we encourage people to do both.
We do not accept financialdonations yet.
That is something we.
I would like to do in thefuture.
We accept donations of food, thebest way to do that would just
to send me an email.
We wanna make sure that we cantruly believe in what we are
sending to these facilities.
Amanda Whitehouse, PhD (18:56):
I bet it, it would also probably be
helpful if anyone hasconnections to or wants to just
encourage the brands that weknow and trust in the food
allergy community to to know andlearn about it.
I would assume that would behelpful too, in raising
awareness of what you're doing.
Devin Sailer (19:09):
I would agree a hundred percent.
I think I, there is no step thatis too small to helping a
community.
If you do anything at all,you're doing more.
Then people more than a lot ofother people are, and if
everybody just did made onedonation every year, everyone
just did one good act every day.
We would have a lot betterworld.
Amanda Whitehouse, PhD (19:28):
What else do you want people to know
about Safe to Eat?
Devin Sailer (19:32):
I would just like people to know that we're here,
we exist.
There are lots of other entitieslike us, but we are the entity
that is trying to serve upstateNew York.
We are trying to serve our areaand I want people to know.
That there is a need, everywhereacross the United States and the
world in these ruralcommunities.
There are similar difficultieswhen it comes to domestic
(19:52):
violence and homelessness.
Amanda Whitehouse, PhD (19:53):
Well, thank you for doing that work
and thinking of such animportant area of need.
I'm just continually impressedby all of the things that you're
doing and how important they allare.
Devin Sailer (20:02):
Well, thank you for being a part of the
solution.
Thank you for helping us reachout and get the message out
there.
So I hope that this not onlywill help our organization, but
I hope it just helps communitymore broadly.
I hope it helps local andnational communities in being
able to address thesechallenges.
Amanda Whitehouse, PhD (20:20):
I am sure that it will, and the
website again is safe to eatnow.com.
And I will put that in the shownotes too,
Dr. Amanda Whitehouse (20:25):
I would like to talk about you a little
bit as far as the honors or therecognition that you've gotten.
Devin Sailer (20:30):
well, so I recently went to New Orleans to
receive an award called theBilly Michael Student Leadership
Award.
It was a great time.
We were able to tour the WorldWar II Museum.
Now, I'm personally a historybuff.
So it was great to be able tospeak to some of the staff,
speak to Billy Michael himself,and see some of those exhibits.
And of course it was also agreat honor to get the award.
(20:51):
I also recently went to Chicago.
Under the CFAAR AmbassadorsProgram.
It was an amazing time.
I was able, able to meet someextraordinary people, both youth
and adults, uh, especially thedirector of Cfar.
She's an amazing woman and oneof the most intelligent people
I've ever met.
Dr. Amanda Whitehous (21:08):
Absolutely agreed.
She is amazing and has done somuch for the food allergy
community it's wonderful thatshe knows who you are too,
because you're bringing somereally important, wonderful,
intelligent stuff to the tabletoo.
In my house, sometimes I feelreally grateful because we've
outgrown and we're left withpeanut tree, nut sesame.
And the more people I meet, themore manageable that seems
compared to someone like youwith 31 anaphylactic allergies.
(21:31):
Would you mind sharing aboutthat specifically?
Devin Sailer (21:35):
Well, so I am allergic more broadly to all
forms of nuts and fish, whichis.
Obviously a big chunk of the,uh, food plate or the food
pyramids, so to speak.
And so it's, I've grown used toit.
I think absolutely when I wasyounger and we were doing
Halloween and so forth, then itcan become very limiting.
(21:56):
But fish, I would say is themore difficult one in my day to
day, day-to-day, just because Ithink, uh, America.
We're a pretty multiculturalplace.
We have a lot of different kindsof food, a lot of different
diets.
And so I think when it comes toespecially more, uh, Eastern or
Asian foods, what's very commonis fish.
So for instance, sushi I wouldhave as the top one.
(22:18):
Those are very popular, verytrendy restaurants.
It's not really something I cando.
And so especially with peoplewho maybe aren't used to, uh,
food allergies being around,they might have.
Cooking practices, which couldput somebody at risk.
And I've had, uh, cases whereI've had a reaction to just
unsafe food equipment.
It's a reality that is everpresent for me.
Dr. Amanda Whitehouse (22:42):
I appreciate you sharing that
you've actually had a reactionfrom it, because I think that
helps people to hear that it'sreal, you know, that it has
happened.
It's not a fear, we're not beingirrational or, or having
excessive worry about it.
It's an actual risk that causespeople to have a medical issue.
I think it's very helpful topeople, for people to hear,
especially teens, to hear fromother teens, if you're
comfortable, can you share withus if there's a specific,
(23:04):
memorable reaction or the mostrecent one?
Devin Sailer (23:07):
Well, I'll share what I consider the most fun
one.
Fun in terms of it's the beststory to tell.
Certainly was not fun for me.
And so I I was gonna say yourmom doesn't, it was fun.
Oh, she certainly did not, myfamily does not see it as a very
enjoyable experience, but Ithink it's a very fun, insofar
as it is an illuminating storythat you can share.
And so, uh, I consider it thatbecause this is a story where
(23:30):
me, my mother, my sister, we dideverything right and we still
got, you know, screwed over inthe end.
And so I'm gonna leave out anybusiness names, but.
We like to go to New York Cityfrom time to time.
We, we live in upstate and sonot too much to do around me, so
we head down to the city andeverything go, goes very well.
And this is a restaurant andwe've been to many, many times
(23:52):
for amazing restaurant.
Not amazing in terms of safetyanymore, but amazing food.
And so we've been there two orthree times before and we'd get
the same dish every time.
It was delicious.
But then this time they had aitem, a new item on the menu.
Weirdly expensive.
Just too little like flammemignon bites.
(24:13):
And so I eat them.
My mother and I and my sister,we all split them where we all
get, you know, a little tinyportion.
But I'm somebody who loves meat,so I get the lion's share as the
young man who needs to grow.
Yes.
And so, and that turned out tobe a mistake, but continuing
with the story, we were eatingand eating, everything was going
great.
And then we got these littleshots, obviously non-alcoholic,
(24:35):
but they were shots of a, apaste, a soup of some kind, and
they had green onions in them.
And so I took my shot.
It was delicious, and I noticedsomething.
It's been, let's say 30 minutesor so, not too, too long on the
grand scheme of things.
Then I noticed the green onionswere getting stuck to the back
of my throat.
(24:56):
I couldn't swallow them.
And no matter how hard I triedto dislodge'em, I just couldn't.
So I drank water.
Eventually, everything was fine.
Then my mother notices, HeyDevin, you're not looking too
great.
Everything all right?
I felt okay.
So I just took Benadryl.
My mother figured this is justidiopathic angioedema, which is
a condition I have.
(25:16):
We were hoping everything isfine.
We'd ate there so many timesbefore we figured everything was
fine.
So we finish our food and westart walking to the train
station.
We had taken a train.
Uh, from Albany to Poughkeepsieand then to New York.
And so as we're walking there,my family realizes, Hey, Deb,
everything all right?
You're breathing a little weird.
You're not looking too great.
(25:38):
And so eventually I'm able towalk there, everything's okay,
but then I sit down and as I sitdown, my mother starts to get
pretty concerned.
And so we just keep giving meBenadryl and Benadryl.
And because we're, we have atrain we have to take, and if we
don't take this train, we haveno place to stay in New York
City.
We have no way out of New YorkCity.
(25:59):
And being that we live hours andhours away, that's not a good
situation to be.
So we have to make a veryimportant decision.
Are we going to go to thehospital or are we going to
catch this drain?
Now I'm here.
So we obviously made the correctdecision.
We went to the hospital and soat that point it became very
clear.
I was not okay.
We called a taxi, we wiped themdown.
(26:21):
And in that taxi I had to givemyself an epinephrine
autoinjector.
I used the generic version of anEpiPen, and up until this point,
it was very difficult tobreathe.
My nose was running.
Everything felt bad.
It was not a fun time.
So once I injected myselfthrough immediate sensation of
relief, now it was everythingjust good and dandy.
Absolutely not.
But there was that immediaterelief.
(26:43):
And so at this point, there arenow two stories.
There is the story I tell, whichis the cap hold over and I
triumphantly marched into thehospital.
We were told we had to go downanother flight of stairs or
another ramp or so, and Itriumphantly stroll in, and for
some reason these fools at thehospital decide to make me go
into this wheelchair.
(27:04):
That's my story now.
Where my family would tell itdifferently is I am barely able
to walk and they have to drag meinto the hospital where I am.
Then obviously seated in awheelchair, being that I am
unable to move.
And so then I am brought intothe hospital.
They treat me and uh, thehospital staff are very kind to
(27:25):
us.
Uh, we were allowed to staythere over the night.
Everything turned out fine and Iobviously survived, and so that
is what I consider the mostilluminating experience, but
that's not the worst part.
Because you see, up until thispoint, we don't know what caused
the reaction.
Everything seemed normal.
And so after the fact, my mothergets on the phone with this
(27:45):
restaurant to go unnamed and youknow, a woman picks up a young
woman, very aggressive, verysort of snotty, And then my
mother begins to explain thesituation and her response
sticks with us.
To this day, it's, we've beengetting tons of situations like
those, these food allergicreactions.
It turns out there was about aspoonful or so of peanut butter
(28:07):
in these, uh, little bites,filet mignon bites.
And so that's what I'd eaten.
Dr. Amanda Whitehouse (28:13):
Thank you for sharing that.
I can appreciate how you caninfuse some humor into the
story.
I'm still, the word fun isn'tstill sitting well with me, but
I get.
What you mean?
It, it grabs your attention.
Um, but then, so what next Canyou talk about after you've had
a reaction like that?
Obviously maybe you weren'tscared of the moment when you
thought you were triumphantlywalking into the hospital, but
at some point there has to besome emotion that sets in and a
(28:35):
lot of people say it's hard tomove forward and get back into
day-to-day life again afterthat.
Devin Sailer (28:39):
Well, I'll be honest, for me, it wasn't that
difficult to move into the dayto day life just'cause I've
experienced it so many times.
It's not normal at all to me.
It's definitely a abnormalexperience.
But as for fear or emotions thatI felt, I really didn't set in
with me until I was on thehospital bed until they were,
(29:00):
uh.
Putting stuff on me, differentmachines, lots beeping, lots of
panicking and rushing.
And so, you know, I tell thatstory about how I'm triumphantly
marching in.
And I think that sort of speaksto the, not cognitive dissonance
per se, but just the differencein perspective.
Because for me, once I took theepinephrine, it went from this
experience where I can'tbreathe.
(29:20):
Nothing feels right to clarity.
And so I think that at least inthe moment.
Colors, the individualcircumstances where they think
everything is far better than itis, and so, but when you're on
the hospital bed, when theepinephrine's starting to wear
off and you're in other people'scare, I think that's when it got
real for me and I realized I amin danger.
(29:41):
I am in the hospital.
This is not good.
Everything turned out well.
I'm fine now, it's normal to me.
It's not normal for the rest ofpeople, and I think we forget
that sometimes.
Dr. Amanda Whitehouse (29:50):
It changes you and shapes you in so
many ways, which are evident, inthat story and in the way you
handle that.
And even in you saying it's kindof, it's not normal, but it's
just part of life for you,unfortunately.
Are you getting better?
Is your, success rate improvingover time in terms of reducing
the reactions?
Devin Sailer (30:07):
I would say that.
You know, obviously I have a100% success rate.
I like to say with my, uh, foodanaphylaxis, I'm still here.
But what I would say is it's,you know, it's not bad to look
at it from that lens, but theway I like to look at it is just
avoidance is just my successrate in avoiding getting the
(30:28):
reaction in the first place.
And so I think I've gotten farbetter at not getting reactions,
knowing what I'm allergic to.
And, uh, my mother's told mestories about when I was young,
the hospital was my second home.
I was always having reactions, Iwas always getting tests.
This, that and the third.
I was a very annoying kid withmy allergies.
And so when you're not in thebest financial situation, when
(30:50):
you're a single mother with twokids in upstate New York, it can
be very burdensome.
It can be very difficult tonavigate that.
And so I think since I've hadthis lifestyle my whole life,
I've gotten used to it.
I've developed strategies I'vedeveloped.
A way to center my life aroundit without it necessarily
limiting my life.
And I think that's the mostimportant aspect is when we talk
(31:15):
to kids and when we talk to foodallergy parents, I think we far
too often focus on the fear andthe limitation of it.
And I think it's the naturalinstinct of food allergy parents
to wanna protect their kids, butalso we can't smother them.
We can't say You will never dothis.
So I bring up the example of.
When a woman with all of herbest interest, with all love in
(31:38):
her heart said, you know, yourson's a very impressive kid.
He's got a lot of allergies.
But you know, there was thisother kid that I knew who went
to Canada.
Maybe your son will be able todo that someday.
And now I have gone to Canada.
I've also gone to about 19 othercountries.
And so I think it's not out of aplace of malice or a place of
pity, but even when we'respeaking with the best of
(32:00):
intentions, I think wesometimes.
Put kids down when we speak likethat.
And so I think it's veryimportant to remember these are
gonna be adults someday and weneed to help them and facilitate
their growth as individuals andfind ways to make life work for
their allergies, not make themlive life for their allergies.
Yeah.
Dr. Amanda Whitehouse (32:20):
Thank you so much for saying that.
I love that.
You don't have to be in theallergy box or whatever other
thing.
You, we as a, you know, otherpeople outside of it think we
have to pity this child or thatthey are limited by or because
of.
Right.
Devin Sailer (32:32):
And that happens in school a lot is people, I've
spoken to them at tag, at Cfarat this, that, and the third is
what I hear time and time againis they don't like to be known
as the allergy kid.
And I think that's sometime alabel that's slapped on people
where they think, oh, there'sDevin.
He can't eat anything.
Oh, there's Susie, there'sBobby, so on and so forth.
(32:54):
And I, it's not dehumanizing,but it definitely strips some of
their individuality in somesense.
And they're just ascribed, hereis a label.
Here's what you are.
This is how we'll perceive you,and we will treat you this way
depending on the circumstances.
It's not done.
I think most of the time out ofa place of malice.
And I think that's veryimportant to remember is
sometimes people just don'tknow.
(33:16):
I don't think we learn enoughabout food allergies.
I don't think we learn enoughabout these very unique
circumstances.
And so that's something that Ithink programs like these can
help to change and that's one ofthe reasons why I'm so glad to
be on here to help if I caneducate one person, I'm think
I've accomplished my goal.
Yeah.
Dr. Amanda Whitehouse (33:33):
Well, I know you're educating way more
than one person.
You've so many other placesbesides here on this show With
me.
You're making such a bigdifference and I think showing
through your life that you'renot one dimensional, right?
There's so much you have to do.
There's no limits.
So I was wondering if we canwrap up by you telling us what
your goals are.
I think we're gonna see bigthings from you in the future.
What might they be?
Devin Sailer (33:53):
Well, I hope that I can do big things in the
future.
My immediate goal is just to getinto a good college.
I don't know exactly where.
I don't know exactly what, andyou know, I'm okay with that.
I think I just saw sort of gottaroll with the punches, see where
life takes me, and adjust thesales.
And so immediately.
I wanna do good in my last yearof high school, get into a good
(34:13):
college, get into a good swingat college, and I don't want to
be limited at college now.
I'm not somebody who likes toparty.
I'm not somebody who loves goingto the raves or whatnot, but I
also want to have a good collegeexperience.
And I think if I'm able to dothat and develop some tips,
develop some habits, and thenmaybe teach some of the kids
going into college or going intohigh school, how they can do
(34:36):
that.
I think that is going to be veryrewarding for me and just some
way where I can pass on myknowledge to the future
generations and those who havehad similar circumstances to me.
Dr. Amanda Whitehouse (34:48):
I have no doubt that you'll be able to
find a way to navigate that anddo that.
And, I'm saying big things inyour future, but you're already
doing big things and so thankyou for that and all of the work
that for everyone in the foodallergy community.
Last thoughts for the audience?
Devin Sailer (35:01):
I would just say some final closing remarks is.
To any kids out there, you, youcan't let your food allergies
define you and to any parentsout there, you can't let your
kids' food allergies limit them.
You have to make sure you havethe conversation with them.
You have to make sure thatyou're letting them live their
life to their fullest despitetheir food allergies.
Dr. Amanda Whitehouse (35:20):
I know I, as a mom look forward to having
my 14-year-old son listen tothis episode, as you said,
especially to have guys who arerole models and talking about
stuff like this openly is sopowerful.
Well,
Devin Sailer (35:31):
thank you for having me on.
Amanda Whitehouse, PhD (35:32):
Here are three action steps to take this
conversation further.
Number one, get involved with alocal or regional food allergy
advocacy organization.
Many of these need volunteers.
They need participants.
They need student ambassadors,families to support other
families, in creating communitysupport and change.
Number two, find Devinorganization safe to eat.
(35:54):
They're working so hard toensure that children and
families navigating foodallergies have safe, reliable
food options in moments ofcrisis.
The website is safe to eatnow.com.
And last number three, sharethis episode with a teen in your
life, or the parent of a teenwho is managing food allergies.
It can be very powerful for bothyoung people and parents to hear
(36:15):
from a teen like Devin whounderstands them and is an
example of positive change.
You can find links to everythingwe discussed in the show notes,
and I really appreciate youlistening and being a part of
this community.
As always, it would mean so muchto me if you find the show
helpful.
If you would leave me a ratingor a review and share it with
anybody that might appreciateit.
(36:36):
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.
since I've had this lifestyle my whole life,
(00:03):
I've gotten used to it.
I've developed strategies I'vedeveloped.
A way to center my life aroundit without it necessarily
limiting my life.
When we talk to kids and when wetalk to food allergy parents, I
think we far too often focus onthe fear and the limitation of
it.
And I think it's the naturalinstinct of food allergy parents
to wanna protect their kids, butalso we can't smother them.
(00:26):
We need to help them andfacilitate their growth as
individuals and find ways tomake life work for their
allergies, not make them livelife for their allergies.
Speaker (00:37):
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 (00:58):
today's conversation is a very inspiring
chat with an amazing youngteenager.
Devin August Sailer is here totell you about the work that
he's been doing as a nonprofitfounder, a legislative advocate
working on changing the laws toimprove food allergy safety in
New York and in the UnitedStates.
Devon lives with 31life-threatening allergies and
(01:19):
has turned his personal healthcrisis into a powerful public
mission.
At 17, he founded a nonprofitcalled Safe to Eat, which brings
allergen aware food to domesticviolence and homeless shelters
across New York State.
Devon says something that Ilove, which is that he's working
so that his voice will help toreshape not only laws but lives
Dr. Amanda Whitehouse (01:38):
Devin, it is so nice to see you again.
We met in Albany early thisyear, and I loved meeting you
and seeing you in action, so I'mso glad to have you here in the
show now.
Devin Sailer (01:47):
I'm absolutely very happy to be here.
It was an honor to meet youthere.
I think we had a great littlediscussion about food allergy
anxiety and the general effectsof more the mental health side,
which I think is sort of underspoken about and
underrepresented in thecommunity.
Dr. Amanda Whitehouse (02:00):
I agree, especially from, younger people
who are the ones living it.
There's a lot of us moms outhere talking about it.
Not as many of us focusing onthe mental health, but
definitely becoming a biggerconversation.
But you are the person and thekind of people that I think we
need to hear from about thatside of things and what's needed
and, and where we need to go.
Devin Sailer (02:18):
I think sometimes the kids, it's a little
embarrassing or perhaps shamefulfor them to speak about these
sort of mental health topics,especially, For the men, they
sort of see it as a weakness orsort of emasculating, and so
that's a stigma that I reallythink programs like this can
help to break down and pave anew path for the future with
this.
Dr. Amanda Whitehou (02:38):
Absolutely.
People like you, being a part ofit is, is the most effective way
for me to do that here on myplatform.
So thank you.
And just in case people aren'tfamiliar with you, could you
introduce yourself to theaudience?
Devin Sailer (02:49):
Well, I'm Devin, August Sailor.
I'm just a boy from upstate NewYork who happens to have 31
anaphylactic food allergies.
And so throughout my life I'vealways struggled with my food
allergies and asthma.
And so really.
A few years ago, I decided thatI wanted to combine my personal
experience with food allergiesand my interest in politics and
(03:10):
government, sort of combine themtogether to see how I could
better the community.
And so that's really led me onthis very interesting course
where I've been to Congress andI've been to the state
legislature many times.
I just came back from Chicago onanother trip that I went to to
speak about food allergies andsuch with Cfar.
And so it's been the honor of alifetime so far,
Dr. Amanda Whitehouse (03:29):
yeah.
Why don't we start with, thefood allergy part.
Tell us about what life is likefrom a young age and, and how
you've, progressed over time asfar as managing that side of
things.
Devin Sailer (03:42):
Well, when you're younger, it's usually not me
who's doing all the work.
I have to give the, uh, kudosand the credit to my mother.
She's single mother, amazingwoman.
She really kept me alive verysimply.
She saved my life on multipleoccasions.
And so when you're in thatyounger era, uh, you certainly
do have a lot moreresponsibility than a typical
seven or 8-year-old.
(04:02):
You're responsible for yourepinephrine, responsible for
your own life, in some sense ofthe work.
So I don't think most seven,eight, 6-year-old kids are
reading food labels.
They're not, uh, obsessing overevery little thing they're
putting in their body.
They're typically putting thingsthat shouldn't be in their body,
like crayons, hands, and soforth.
And so when you're that age,there is that difficulty in it.
But as you progress through theyears, it certainly gets a lot
(04:25):
easier carrying an EpiPen ornephew or some other form of
epinephrine.
It just becomes second nature.
But I do also think as you.
Age into those later teen years.
It can be a little embarrassingto carry it as well as I do
think there is that, you know,hormonal sort of foolish risk
taking that often happens andthat can be a recipe for
(04:46):
disaster.
In my personal life I've, youknow, sort of abstain from that.
But it's absolutely a realityfor many, uh, who are struggling
with this condition.
Yeah.
Dr. Amanda Whitehouse (04:55):
Well, and I was going to say, you seem so
levelheaded, but so do many ofthe teenagers that I know with
food allergies so even thoughyou haven't experienced that,
can you talk about what you'veseen with peers or what you
think is going on when kids hitthat phase?
Devin Sailer (05:08):
On that?
I would just say a watch potnever boils when you're looking
at somebody from afar, theyalways look.
All pristine and perfect, myselfincluded.
But everyone has their, uh, mixups.
Everyone has their flaws.
And so I serve on somethingcalled tag, the Teen Advisory
Group.
And that is an organization fromFARE where sort of older kids
can speak, not necessarily onlyto younger people, but as well
(05:29):
as those of their peers.
And they can give them a littleguidance on the future.
And so I certainly do hear a bitabout partying and so forth and
how that can.
Impact their lives.
I come from an area in rural,upstate New York, we really
don't have many kids who havefood allergies.
But there is one otherindividual at my school who also
has food allergies.
(05:51):
And he's spoken to me a bitabout how it can be difficult,
uh, in social settings.
And it's not so much a shame,but just.
It's a little weird and clunkyto carry around these giant pens
all the time and constantlyhaving to explain them and so
that can absolutely bedifficulty.
Dr. Amanda Whitehouse (06:07):
Yeah.
Have you found that as well,even though like you said,
you've maintained yourlevelheadedness and you're not
into the risk taking but has itbeen challenging for you too?
Devin Sailer (06:15):
I've absolutely had my share of challenges with
it.
Sometimes I forget myepinephrine.
I won't lie.
I won't say that I'm some angelwho has never made a mistake.
I absolutely make mistakes.
I forget my epinephrine fromtime to time, and that can be a
very stressful experience aswell as I'm somebody who
travels.
Uh, I'm very fortunate where I'mable to travel and so when
you're going into differentcountries, when you're going
(06:36):
through airport security, uh, itcan be very difficult to carry
these epinephrines on you.
'cause they may be, I can giveyou an example.
Just a little bit ago when I wastraveling to Chicago, uh, they
man took my epinephrine and theyasked me, what is this?
I briefly explained to him, butwe were three minutes away from
my flight going off.
We had no time to do it.
And instead of putting myepinephrine back in the bin, he
(06:58):
put it in some random bin at theend of the line.
And so if a family member ofmine hadn't caught that, I
would've been without myepinephrine in a city a thousand
miles away from where I live.
And so, especially when you'reoutside of the house, or even
more so when you're outside ofyour I municipality or your
state, it can be a verystressful experience.
Dr. Amanda Whitehouse (07:15):
Yeah.
Tell us how, and I know we werevery young, but how you first
got involved in advocacy and allof the work that you've been
doing.
Devin Sailer (07:23):
Well, so we like to say that I started at age
three, but I think if anyone hasmet a 3-year-old, it's pretty
obvious.
I wasn't giving speeches, Iwasn't doing the complicated
work.
What I was doing is I was.
Uh, going on food allergy walks,we would carry little signs and
so forth.
Really the minor things you cando at that age, but it was
(07:44):
impactful to me.
And so as I matured, as I grewup, I sort of began to develop
an interest in politics andgovernment.
And so me and my family had atalk one day saying, Devin, you
love politics, you lovegovernment.
You also have this unique set ofcircumstances and challenges.
Why not combine these twointerests of yours?
Combine these two circumstancesand try to find a way to improve
(08:06):
the community.
And so then the first thing wedid is we talked to an
organization that I'd workedwith in the past called FARE,
and I was able to go to aCongress at DC and it was called
FARE Courage at Congress.
And it was really my firstexposure to the legislative
process.
And how the government works atan individual to legislator
basis.
(08:26):
And you know, it was absolutelyvery interesting for me.
Did we get everything we wanted?
No, but it's a very complicatedworld up in Washington and so
it's very difficult to meetwith, uh, legislators in
Washington.
So then we decided this issomething I still want to keep
doing, but we can't afford.
And it's just not feasible formost people, including myself,
(08:48):
to go to DC every year to go toDC every few months.
But what is feasible is to go toAlbany every few months where I,
New York, that's our capital,but it's dependent on your
state, obviously.
And so we decided we were goingto go to the state legislature
now and again to advocate fornew,, laws, to advocate for new
sort of.
Projects that we were workingon, and so I worked with food
(09:10):
allergy advocates of New Yorkand I continue to do so, and
it's a great organization.
We work well together and I'mvery proud of the work we've
gotten done.
Dr. Amanda Whiteho (09:19):
Absolutely., That was where I met you was
this year's, food allergyadvocates of New York, advocacy
day in all of your experienceswith this so far, do you have a
proudest moment or biggestaccomplishment that you've been
able to be involved with?
Devin Sailer (09:34):
Oh, absolutely.
For me now, it wasn't just mepersonally, but for Food Allergy
Advocates of New York, I thinkwhat has to be our sort of
crowning achievement is theepinephrine price cap.
So epinephrine costs about$8 tomanufacture with not just the
medicine but the auto injector.
All yet, they could sell as highas$800 and that's every year you
(09:55):
have to replace them.
And so in the state of New York,we got a captain$100 a year, and
that is, I truly did not believeit would get passed I thought
this is a very big ask.
Doesn't matter what party's incontrol, doesn't matter what
type of the individuals in thatparty's in control.
This is a big ask to ask for anystate legislature, but we were
(10:16):
able to get it passed and I wasshocked and I'm very glad that
it happened.
And so that has to be my, andprobably food out, food allergy
advocates of New York's, uh,crowning Achievement, I would
say.
Dr. Amanda Whitehouse (10:29):
I agree and I thank you personally for
that.
And I know, John Terry and ToniTaylor are are.
So influential and, and takingthe lead on that group, and so
thank you to them and everyoneelse for that.
I'm in New York as well.
As I mentioned, very excited forthis one to take place because
as you said, one of the biggest,ways to stay safe is just we, we
keep a pack.
You know, here we keep a pack ofgrandma and grandpa's, keep one
(10:50):
at school, keep one at youroffice and that can add up, but
it's not frivolous.
It's really necessary.
So that is not an option foreverybody the way that the
pricing is right now.
Absolutely.
Devin Sailer (10:59):
And people shouldn't have to choose
between, uh, for instance, rentand uh, epinephrine.
It's just not a situation wherewe should force to be in.
And so that's why this law is sonecessary and so groundbreaking
in my opinion.
Politics, I think people like tosay, oh, it's a game of chess
where you're making veryintricate motions.
I really don't think that it'sreally like a dominoes.
You set'em up, they fall.
(11:20):
They fall short.
That's just how it's, and so I'mhoping that we can have that
domino effect in New York thatspreads northeast, spreads down
south, and then we take it allthe way west.
That's what I hope happens.
Dr. Amanda Whitehouse (11:31):
I agree.
And I, I would have to say tocontinue on your metaphor, I
think the key part of that, thatI am learning from all of you
is.
You have to set the dominoesback up, right, and over and
over.
That's the part that gets thejob done eventually, is just
that persistence and that hardwork.
Devin Sailer (11:46):
And on that a bit, I think I've spoken to the
legislatures a bit on this, andjust if anyone out there is
working in this advocacyindustry, anyone who's working
out there in the lobbyingindustry, what I have repeatedly
heard time and time again isjust the bane of the existence
of legislatures.
Is when people come in with abill one year, it gets rejected
and they propose the exact samebill year after you.
(12:09):
If you don't speak to theopposition, if you don't speak
to the main party and see whatcaused them not to support it,
it's just going to keep havingthe same result.
So you have to modify the bill.
You have to take, uh, differentviews into account, even if it
might water down the bill alittle bit.
I would much rather have awatered down bill than no bill
at all.
Dr. Amanda Whitehouse (12:30):
Right and in time.
Continue to improve upon andmake changes as necessary,
right?
Devin Sailer (12:35):
Absolutely.
Amanda Whitehouse, PhD (12:36):
Devin, I know one of the projects that
you are so excited about issomething that you have created
So please tell us all about it.
Devin Sailer (12:43):
Well, so over the summer I founded a charity
called Safe to Eat, and so thatname comes from myself and some
of the issues that my peoplelike me have.
When it comes to, uh, domesticviolence and homeless shelters,
is that they don't have foodthat is necessarily safe for
them to eat.
And so what we do is wefacilitate the flow of top nine
(13:04):
allergen and gluten-free foodsinto domestic violence and
homeless shelters.
And so over the course of ourjourney, so far, we've had some
pretty big successes.
We've delivered hundreds ofpounds of food to, uh, several
shelters across upstate NewYork.
About the size of Jamaica is thearea that we serve, but we want
to expand.
So we want to, over the next fewyears expand to cover the
(13:27):
entirety of upstate New York andwe'll see where it takes us from
there.
Amanda Whitehouse, PhD (13:30):
How did you get the idea for this?
Devin Sailer (13:32):
Well, the idea really came from, uh, my life is
that, uh, I was never in adomestic violence shelter.
I was never in a homelessshelter.
But, grew up in an area where wehave a high population of
homeless people..
That combined with, uh, mychildhood is my mother works in
midwifery.
We're constantly around women.
(13:53):
We see them at the stores.
They say hi to us and a lot ofthem are in not great
situations.
And so that sort of inspired me.
Those two, uh, factors in myupbringing is to say, what if I
were in that situation wheresomebody like me was in that
situation?
I don't know if I would survivethat.
So somebody needs to be lookingout for these people.
Amanda Whitehouse, PhD (14:14):
Yeah.
Yeah.
We talk a lot about access tosafe foods.
When there are disasters anddisaster relief, bringing safe
and accessible food to people.
But this is another area wherepeople are in a time of probably
the most need of their lives.
Devin Sailer (14:27):
Yeah, I agree a hundred percent.
We're a small team.
It's myself, my family, mymother, and then some people
working with us.
And so we're very proud of whatwe've accomplished and we hope
that we can bring that level ofsafety, that level of comfort to
some of the families that we'vehelped out.
Amanda Whitehouse, PhD (14:45):
Tell me how you start going about
establishing something likethat.
Where do you begin with such abig undertaking?
Devin Sailer (14:51):
Well, the direction we chose is just to
become a nonprofit.
You have to get into contactwith, domestic violence
shelters, homeless shelters, andother facilities to make sure,
hey, we're somebody who exists.
We intend to continue doingthis.
We want to have a fruitfulrelationship together.
How can we get this started?
Sometimes that can be more orless, uh, accomplishments, uh,
(15:13):
depending on who you call andthe time of year.
So, uh, for us, I would argue wewere very successful.
We got our goal and we're justchugging along from there.
I can't tell you the endingphase'cause we're not there yet.
I don't think we ever will be.
Education is a major componentof what we do.
Every time we deliver food.
We have flyers and pamphletstalking about our charity,
(15:36):
talking about why we have toprovide this food.
We're not just people trying tobe good Samaritans.
We're trying to further a causeby saying, this is an issue that
is unaddressed.
Here's how, even if for somereason we're unable to deliver
this food, here's how you cancare for these people.
Amanda Whitehouse, PhD (15:51):
Who are your biggest supporters so far?
Devin Sailer (15:53):
Well, one of our biggest supporters is Vermont
Nut Free, If somebody reachesout to us, obviously we're going
to, uh, speak to them.
We love when that happens, butsometimes you have to give that
initial push and see whathappens.
Sometimes we buy our own food,so if we didn't get as much as
we would've necessarily wanted,we can top ourselves off.
We say, okay, we'll reach intoour own personal finances and
(16:15):
buy X amount of food.
Amanda Whitehouse, PhD (16:16):
That's amazing and a huge shout out to
Vermont Nut Free.
They're an amazing company.
Devin Sailer (16:20):
an amazing, uh, company.
I, in my personal life, we'renot sponsored by them, but we
have partnered with them.
We love their products and it'sso kind of them to work with us.
Okay.
Amanda Whitehouse, PhD (16:30):
Well, it's so heartwarming you know,
as a kid with food allergies,when you can have like a
chocolate bar or a special treatthat is safe for you, it's, it's
so amazing.
But especially in thatsituation,
Devin Sailer (16:40):
That is something we wanna focus on'cause we're
approaching some of what I wouldcall the major food holidays.
When you're in these, uh,situations in domestic violence
shelters, in homeless shelters.
You can't necessarily have thatsame Halloween experience, or
for instance, Thanksgiving,where a lot of it is, for
instance, pecan pies and soforth, as well as into
Christmas.
Depending on your personalculture, depending on where
(17:03):
you're from, where you are inthis country, it can have a
gargantuan amount of nuts or youcan have less.
That's something else we want tomake sure we can address, is
that we don't think that thecircumstances of your birth or
your situation should preventchildren from having a good
holiday season.
I don't think that you shouldhave a less happy holiday season
(17:23):
or life because of thecircumstance of your birth,
that's just wrong.
Amanda Whitehouse, PhD (17:27):
That's such a great point and with all
the winter holidays coming up,it's a great time and a great
reminder to ask people tosupport your organization if
they are moved by this, whichI'm sure they will be.
And the thought of helpingfamilies in those situations is
so awesome.
What can people do to getinvolved and to help and support
you?
Devin Sailer (17:46):
Well to get involved, if you want to get
involved with me, you can go toour website, safe to eat now, or
you can shoot me an email.
My email is also on the website.
I will talk to anybody aboutanything.
If there's anything I could doto help people, I would love to
hear it.
As for how they can get involvedmore broadly.
I think awareness is obviously abig thing that, uh, will assist
my project and other projectslike it across our country and
(18:08):
hopefully across the globe.
But as well as it is just tomaybe have this, inspire you to
donate to a facility in yourarea.
Maybe have this be a reminderthat in more rural areas, even
outside of more metropolitancommunities, there's also a need
for this.
So if you want to make adonation to an.
(18:29):
Uh, domestic violence shelter inyour area.
Amanda Whitehouse, PhD (18:31):
Do you accept financial donations or
food, or are you encouragingpeople to donate more directly
to the facilities?
Only.
Devin Sailer (18:38):
Uh, we encourage people to do both.
We do not accept financialdonations yet.
That is something we.
I would like to do in thefuture.
We accept donations of food, thebest way to do that would just
to send me an email.
We wanna make sure that we cantruly believe in what we are
sending to these facilities.
Amanda Whitehouse, PhD (18:56):
I bet it, it would also probably be
helpful if anyone hasconnections to or wants to just
encourage the brands that weknow and trust in the food
allergy community to to know andlearn about it.
I would assume that would behelpful too, in raising
awareness of what you're doing.
Devin Sailer (19:09):
I would agree a hundred percent.
I think I, there is no step thatis too small to helping a
community.
If you do anything at all,you're doing more.
Then people more than a lot ofother people are, and if
everybody just did made onedonation every year, everyone
just did one good act every day.
We would have a lot betterworld.
Amanda Whitehouse, PhD (19:28):
What else do you want people to know
about Safe to Eat?
Devin Sailer (19:32):
I would just like people to know that we're here,
we exist.
There are lots of other entitieslike us, but we are the entity
that is trying to serve upstateNew York.
We are trying to serve our areaand I want people to know.
That there is a need, everywhereacross the United States and the
world in these ruralcommunities.
There are similar difficultieswhen it comes to domestic
(19:52):
violence and homelessness.
Amanda Whitehouse, PhD (19:53):
Well, thank you for doing that work
and thinking of such animportant area of need.
I'm just continually impressedby all of the things that you're
doing and how important they allare.
Devin Sailer (20:02):
Well, thank you for being a part of the
solution.
Thank you for helping us reachout and get the message out
there.
So I hope that this not onlywill help our organization, but
I hope it just helps communitymore broadly.
I hope it helps local andnational communities in being
able to address thesechallenges.
Amanda Whitehouse, PhD (20:20):
I am sure that it will, and the
website again is safe to eatnow.com.
And I will put that in the shownotes too,
Dr. Amanda Whitehouse (20:25):
I would like to talk about you a little
bit as far as the honors or therecognition that you've gotten.
Devin Sailer (20:30):
well, so I recently went to New Orleans to
receive an award called theBilly Michael Student Leadership
Award.
It was a great time.
We were able to tour the WorldWar II Museum.
Now, I'm personally a historybuff.
So it was great to be able tospeak to some of the staff,
speak to Billy Michael himself,and see some of those exhibits.
And of course it was also agreat honor to get the award.
(20:51):
I also recently went to Chicago.
Under the CFAAR AmbassadorsProgram.
It was an amazing time.
I was able, able to meet someextraordinary people, both youth
and adults, uh, especially thedirector of Cfar.
She's an amazing woman and oneof the most intelligent people
I've ever met.
Dr. Amanda Whitehous (21:08):
Absolutely agreed.
She is amazing and has done somuch for the food allergy
community it's wonderful thatshe knows who you are too,
because you're bringing somereally important, wonderful,
intelligent stuff to the tabletoo.
In my house, sometimes I feelreally grateful because we've
outgrown and we're left withpeanut tree, nut sesame.
And the more people I meet, themore manageable that seems
compared to someone like youwith 31 anaphylactic allergies.
(21:31):
Would you mind sharing aboutthat specifically?
Devin Sailer (21:35):
Well, so I am allergic more broadly to all
forms of nuts and fish, whichis.
Obviously a big chunk of the,uh, food plate or the food
pyramids, so to speak.
And so it's, I've grown used toit.
I think absolutely when I wasyounger and we were doing
Halloween and so forth, then itcan become very limiting.
(21:56):
But fish, I would say is themore difficult one in my day to
day, day-to-day, just because Ithink, uh, America.
We're a pretty multiculturalplace.
We have a lot of different kindsof food, a lot of different
diets.
And so I think when it comes toespecially more, uh, Eastern or
Asian foods, what's very commonis fish.
So for instance, sushi I wouldhave as the top one.
(22:18):
Those are very popular, verytrendy restaurants.
It's not really something I cando.
And so especially with peoplewho maybe aren't used to, uh,
food allergies being around,they might have.
Cooking practices, which couldput somebody at risk.
And I've had, uh, cases whereI've had a reaction to just
unsafe food equipment.
It's a reality that is everpresent for me.
Dr. Amanda Whitehouse (22:42):
I appreciate you sharing that
you've actually had a reactionfrom it, because I think that
helps people to hear that it'sreal, you know, that it has
happened.
It's not a fear, we're not beingirrational or, or having
excessive worry about it.
It's an actual risk that causespeople to have a medical issue.
I think it's very helpful topeople, for people to hear,
especially teens, to hear fromother teens, if you're
comfortable, can you share withus if there's a specific,
(23:04):
memorable reaction or the mostrecent one?
Devin Sailer (23:07):
Well, I'll share what I consider the most fun
one.
Fun in terms of it's the beststory to tell.
Certainly was not fun for me.
And so I I was gonna say yourmom doesn't, it was fun.
Oh, she certainly did not, myfamily does not see it as a very
enjoyable experience, but Ithink it's a very fun, insofar
as it is an illuminating storythat you can share.
And so, uh, I consider it thatbecause this is a story where
(23:30):
me, my mother, my sister, we dideverything right and we still
got, you know, screwed over inthe end.
And so I'm gonna leave out anybusiness names, but.
We like to go to New York Cityfrom time to time.
We, we live in upstate and sonot too much to do around me, so
we head down to the city andeverything go, goes very well.
And this is a restaurant andwe've been to many, many times
(23:52):
for amazing restaurant.
Not amazing in terms of safetyanymore, but amazing food.
And so we've been there two orthree times before and we'd get
the same dish every time.
It was delicious.
But then this time they had aitem, a new item on the menu.
Weirdly expensive.
Just too little like flammemignon bites.
(24:13):
And so I eat them.
My mother and I and my sister,we all split them where we all
get, you know, a little tinyportion.
But I'm somebody who loves meat,so I get the lion's share as the
young man who needs to grow.
Yes.
And so, and that turned out tobe a mistake, but continuing
with the story, we were eatingand eating, everything was going
great.
And then we got these littleshots, obviously non-alcoholic,
(24:35):
but they were shots of a, apaste, a soup of some kind, and
they had green onions in them.
And so I took my shot.
It was delicious, and I noticedsomething.
It's been, let's say 30 minutesor so, not too, too long on the
grand scheme of things.
Then I noticed the green onionswere getting stuck to the back
of my throat.
(24:56):
I couldn't swallow them.
And no matter how hard I triedto dislodge'em, I just couldn't.
So I drank water.
Eventually, everything was fine.
Then my mother notices, HeyDevin, you're not looking too
great.
Everything all right?
I felt okay.
So I just took Benadryl.
My mother figured this is justidiopathic angioedema, which is
a condition I have.
(25:16):
We were hoping everything isfine.
We'd ate there so many timesbefore we figured everything was
fine.
So we finish our food and westart walking to the train
station.
We had taken a train.
Uh, from Albany to Poughkeepsieand then to New York.
And so as we're walking there,my family realizes, Hey, Deb,
everything all right?
You're breathing a little weird.
You're not looking too great.
(25:38):
And so eventually I'm able towalk there, everything's okay,
but then I sit down and as I sitdown, my mother starts to get
pretty concerned.
And so we just keep giving meBenadryl and Benadryl.
And because we're, we have atrain we have to take, and if we
don't take this train, we haveno place to stay in New York
City.
We have no way out of New YorkCity.
(25:59):
And being that we live hours andhours away, that's not a good
situation to be.
So we have to make a veryimportant decision.
Are we going to go to thehospital or are we going to
catch this drain?
Now I'm here.
So we obviously made the correctdecision.
We went to the hospital and soat that point it became very
clear.
I was not okay.
We called a taxi, we wiped themdown.
(26:21):
And in that taxi I had to givemyself an epinephrine
autoinjector.
I used the generic version of anEpiPen, and up until this point,
it was very difficult tobreathe.
My nose was running.
Everything felt bad.
It was not a fun time.
So once I injected myselfthrough immediate sensation of
relief, now it was everythingjust good and dandy.
Absolutely not.
But there was that immediaterelief.
(26:43):
And so at this point, there arenow two stories.
There is the story I tell, whichis the cap hold over and I
triumphantly marched into thehospital.
We were told we had to go downanother flight of stairs or
another ramp or so, and Itriumphantly stroll in, and for
some reason these fools at thehospital decide to make me go
into this wheelchair.
(27:04):
That's my story now.
Where my family would tell itdifferently is I am barely able
to walk and they have to drag meinto the hospital where I am.
Then obviously seated in awheelchair, being that I am
unable to move.
And so then I am brought intothe hospital.
They treat me and uh, thehospital staff are very kind to
(27:25):
us.
Uh, we were allowed to staythere over the night.
Everything turned out fine and Iobviously survived, and so that
is what I consider the mostilluminating experience, but
that's not the worst part.
Because you see, up until thispoint, we don't know what caused
the reaction.
Everything seemed normal.
And so after the fact, my mothergets on the phone with this
(27:45):
restaurant to go unnamed and youknow, a woman picks up a young
woman, very aggressive, verysort of snotty, And then my
mother begins to explain thesituation and her response
sticks with us.
To this day, it's, we've beengetting tons of situations like
those, these food allergicreactions.
It turns out there was about aspoonful or so of peanut butter
(28:07):
in these, uh, little bites,filet mignon bites.
And so that's what I'd eaten.
Dr. Amanda Whitehouse (28:13):
Thank you for sharing that.
I can appreciate how you caninfuse some humor into the
story.
I'm still, the word fun isn'tstill sitting well with me, but
I get.
What you mean?
It, it grabs your attention.
Um, but then, so what next Canyou talk about after you've had
a reaction like that?
Obviously maybe you weren'tscared of the moment when you
thought you were triumphantlywalking into the hospital, but
at some point there has to besome emotion that sets in and a
(28:35):
lot of people say it's hard tomove forward and get back into
day-to-day life again afterthat.
Devin Sailer (28:39):
Well, I'll be honest, for me, it wasn't that
difficult to move into the dayto day life just'cause I've
experienced it so many times.
It's not normal at all to me.
It's definitely a abnormalexperience.
But as for fear or emotions thatI felt, I really didn't set in
with me until I was on thehospital bed until they were,
(29:00):
uh.
Putting stuff on me, differentmachines, lots beeping, lots of
panicking and rushing.
And so, you know, I tell thatstory about how I'm triumphantly
marching in.
And I think that sort of speaksto the, not cognitive dissonance
per se, but just the differencein perspective.
Because for me, once I took theepinephrine, it went from this
experience where I can'tbreathe.
(29:20):
Nothing feels right to clarity.
And so I think that at least inthe moment.
Colors, the individualcircumstances where they think
everything is far better than itis, and so, but when you're on
the hospital bed, when theepinephrine's starting to wear
off and you're in other people'scare, I think that's when it got
real for me and I realized I amin danger.
(29:41):
I am in the hospital.
This is not good.
Everything turned out well.
I'm fine now, it's normal to me.
It's not normal for the rest ofpeople, and I think we forget
that sometimes.
Dr. Amanda Whitehouse (29:50):
It changes you and shapes you in so
many ways, which are evident, inthat story and in the way you
handle that.
And even in you saying it's kindof, it's not normal, but it's
just part of life for you,unfortunately.
Are you getting better?
Is your, success rate improvingover time in terms of reducing
the reactions?
Devin Sailer (30:07):
I would say that.
You know, obviously I have a100% success rate.
I like to say with my, uh, foodanaphylaxis, I'm still here.
But what I would say is it's,you know, it's not bad to look
at it from that lens, but theway I like to look at it is just
avoidance is just my successrate in avoiding getting the
(30:28):
reaction in the first place.
And so I think I've gotten farbetter at not getting reactions,
knowing what I'm allergic to.
And, uh, my mother's told mestories about when I was young,
the hospital was my second home.
I was always having reactions, Iwas always getting tests.
This, that and the third.
I was a very annoying kid withmy allergies.
And so when you're not in thebest financial situation, when
(30:50):
you're a single mother with twokids in upstate New York, it can
be very burdensome.
It can be very difficult tonavigate that.
And so I think since I've hadthis lifestyle my whole life,
I've gotten used to it.
I've developed strategies I'vedeveloped.
A way to center my life aroundit without it necessarily
limiting my life.
And I think that's the mostimportant aspect is when we talk
(31:15):
to kids and when we talk to foodallergy parents, I think we far
too often focus on the fear andthe limitation of it.
And I think it's the naturalinstinct of food allergy parents
to wanna protect their kids, butalso we can't smother them.
We can't say You will never dothis.
So I bring up the example of.
When a woman with all of herbest interest, with all love in
(31:38):
her heart said, you know, yourson's a very impressive kid.
He's got a lot of allergies.
But you know, there was thisother kid that I knew who went
to Canada.
Maybe your son will be able todo that someday.
And now I have gone to Canada.
I've also gone to about 19 othercountries.
And so I think it's not out of aplace of malice or a place of
pity, but even when we'respeaking with the best of
(32:00):
intentions, I think wesometimes.
Put kids down when we speak likethat.
And so I think it's veryimportant to remember these are
gonna be adults someday and weneed to help them and facilitate
their growth as individuals andfind ways to make life work for
their allergies, not make themlive life for their allergies.
Yeah.
Dr. Amanda Whitehouse (32:20):
Thank you so much for saying that.
I love that.
You don't have to be in theallergy box or whatever other
thing.
You, we as a, you know, otherpeople outside of it think we
have to pity this child or thatthey are limited by or because
of.
Right.
Devin Sailer (32:32):
And that happens in school a lot is people, I've
spoken to them at tag, at Cfarat this, that, and the third is
what I hear time and time againis they don't like to be known
as the allergy kid.
And I think that's sometime alabel that's slapped on people
where they think, oh, there'sDevin.
He can't eat anything.
Oh, there's Susie, there'sBobby, so on and so forth.
(32:54):
And I, it's not dehumanizing,but it definitely strips some of
their individuality in somesense.
And they're just ascribed, hereis a label.
Here's what you are.
This is how we'll perceive you,and we will treat you this way
depending on the circumstances.
It's not done.
I think most of the time out ofa place of malice.
And I think that's veryimportant to remember is
sometimes people just don'tknow.
(33:16):
I don't think we learn enoughabout food allergies.
I don't think we learn enoughabout these very unique
circumstances.
And so that's something that Ithink programs like these can
help to change and that's one ofthe reasons why I'm so glad to
be on here to help if I caneducate one person, I'm think
I've accomplished my goal.
Yeah.
Dr. Amanda Whitehouse (33:33):
Well, I know you're educating way more
than one person.
You've so many other placesbesides here on this show With
me.
You're making such a bigdifference and I think showing
through your life that you'renot one dimensional, right?
There's so much you have to do.
There's no limits.
So I was wondering if we canwrap up by you telling us what
your goals are.
I think we're gonna see bigthings from you in the future.
What might they be?
Devin Sailer (33:53):
Well, I hope that I can do big things in the
future.
My immediate goal is just to getinto a good college.
I don't know exactly where.
I don't know exactly what, andyou know, I'm okay with that.
I think I just saw sort of gottaroll with the punches, see where
life takes me, and adjust thesales.
And so immediately.
I wanna do good in my last yearof high school, get into a good
(34:13):
college, get into a good swingat college, and I don't want to
be limited at college now.
I'm not somebody who likes toparty.
I'm not somebody who loves goingto the raves or whatnot, but I
also want to have a good collegeexperience.
And I think if I'm able to dothat and develop some tips,
develop some habits, and thenmaybe teach some of the kids
going into college or going intohigh school, how they can do
(34:36):
that.
I think that is going to be veryrewarding for me and just some
way where I can pass on myknowledge to the future
generations and those who havehad similar circumstances to me.
Dr. Amanda Whitehouse (34:48):
I have no doubt that you'll be able to
find a way to navigate that anddo that.
And, I'm saying big things inyour future, but you're already
doing big things and so thankyou for that and all of the work
that for everyone in the foodallergy community.
Last thoughts for the audience?
Devin Sailer (35:01):
I would just say some final closing remarks is.
To any kids out there, you, youcan't let your food allergies
define you and to any parentsout there, you can't let your
kids' food allergies limit them.
You have to make sure you havethe conversation with them.
You have to make sure thatyou're letting them live their
life to their fullest despitetheir food allergies.
Dr. Amanda Whitehouse (35:20):
I know I, as a mom look forward to having
my 14-year-old son listen tothis episode, as you said,
especially to have guys who arerole models and talking about
stuff like this openly is sopowerful.
Well,
Devin Sailer (35:31):
thank you for having me on.
Amanda Whitehouse, PhD (35:32):
Here are three action steps to take this
conversation further.
Number one, get involved with alocal or regional food allergy
advocacy organization.
Many of these need volunteers.
They need participants.
They need student ambassadors,families to support other
families, in creating communitysupport and change.
Number two, find Devinorganization safe to eat.
(35:54):
They're working so hard toensure that children and
families navigating foodallergies have safe, reliable
food options in moments ofcrisis.
The website is safe to eatnow.com.
And last number three, sharethis episode with a teen in your
life, or the parent of a teenwho is managing food allergies.
It can be very powerful for bothyoung people and parents to hear
(36:15):
from a teen like Devin whounderstands them and is an
example of positive change.
You can find links to everythingwe discussed in the show notes,
and I really appreciate youlistening and being a part of
this community.
As always, it would mean so muchto me if you find the show
helpful.
If you would leave me a ratingor a review and share it with
anybody that might appreciateit.
(36:36):
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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