Finding a Cure for Allergies: Nadim and Tanya Ednan Laperouse / Founders, Natasha Allergy Research Foundation

Direct Talk

Around the world,

food allergies are increasing
in developed countries,

especially in children.

But even adults

are suddenly becoming allergic to what they
always had thought to be "safe foods."

Scientists believe

that the rapid loss of biodiversity
in our environment

may be one contributing factor.

Natasha, the daughter of Nadim
and Tanya Ednan-Laperouse

had suffered from allergies from childhood

and was always careful about what she ate.

But 6 years ago, while setting off on holiday

she bought a sandwich at a UK airport

which unbeknown to her had
one of the ingredients she was allergic to.

Within hours she was dead.

She was 15 years old.

Since her death,

her parents have devoted much of their time
campaigning for better labelling of food

and trying to find a cure for allergies.

Direct Talk met them at their home in London.

Allergies in the world have been increasing
steadily, certainly in the last 30 years.

We've not been really that aware of
just how big an effect its having on society

and how many people are
actually affected by allergy.

It's an enormous issue

and it all started probably
in the 1950s roughly,

really, with something we call hay fever
and people having that first,

wave of allergic disease, hay fever,

that has now move on into food allergies,

sometimes known as the
second wave of allergic disease.

It's a modern disease,

it largely affects western worlds,

and it does seem to be that
there are lots of issues at play here.

But it does seem to be
a modern way of living,

lots of chemicals,

really, removing ourselves from the land.

And we live very differently
to how our ancestors lived,

Natasha had been very careful all her life to
check the ingredients of everything she ate.

From childhood, she was
allergic to several foods.

The sandwich she chose was
from a well-known food chain

but this time sesame seeds -

one of the foods she was allergic to -
had been baked into the bread.

The label on the packaging
didn't include this ingredient.

Tragically, she was mid-flight,

and both her epi pens
which she carried with her everywhere

did not prevent a
catastrophic allergic reaction.

All parents who are listening to this
now we really say that

there is nothing worse than
your child dying in front of you.

And we as a mother and father
were in a very dark place at that time.

And when we found out the reasons behind
what caused Natasha's death

it was an allergy to sesame seed,

which we'd all known she was allergic to.

however, she got caught out
by inadequate food labelling laws,

essentially, in the United Kingdom.

When that became abundantly clear

we realised something had to be done
to stop this ever happening again.

In the aftermath of their daughter's death,

their grief was such that
Nadim struggled to return to his work.

He and his wife decided that
they should do everything they could

to prevent the tragedy that
ended the life of their daughter,

happening to another family.

They decided to put their efforts
into finding a solution.

Their priority was that
labelling on food should be accurate

and that food industries
must be made accountable.

They wanted to create
a new law in Natasha's name

to insist on food labelling.

Ordinarily I run, and own, a toy company,
a children's toy company,

and that required me previously
to travel around the world,

to Japan a lot, working with
department store chains like Takashimaya.

And I just didn't have that in me anymore.

And as we started to
campaign for Natasha's law,

it really became evident the amount of energy

and drive needed to succeed in that

was enormous, huge, and all-encompassing,

and it required really for me personally
to put all my energy and time,

or the majority of it, into that sole focus,

otherwise we may not win.

I think we recognised that
the food industry were fearful of change,

but we set about writing hard,

lots of essays and articles
across all the press,

and campaigning hard on television
to bring about the change,

and in the end we won.

Because our pain was so severe,

you know, nothing was going to stop us
from pushing through.

In October 2021,
Natasha's Law came into effect.

The UK food industry in now has to list
all ingredients on prepacked food.

With every growing number
of allergic customers,

88% of the public
fully supported Natasha's Law.

Natasha's law, what that means is that

food that is made and then prepacked
and sold on the same premises,

it has to carry full ingredient labelling

and that allergens from the top 14 list
have to be in bold.

Before that, the labelling could be whatever
the shop or the outlet decided to put on it,

it could be partial labelling,
just some ingredients,

no ingredients,

and it was very confusing to the public.

So, this is something that
standardized ingredients labelling.

So when someone looks at an ingredient label

they know that it's the full list.

If sesame seeds had been on that food label,
she would be alive today,

so that was the first thing.

But then we were contacted by
hundreds of people from around the country

saying oh my gosh, what's happened to you is
what we live in fear of every single day.

And it was only then,
after the inquest, just after,

that we realised that
the number of people with allergies

had been on this huge increase,

not just in this country, but in the world.

We were being contacted from people
in countries over Europe, America, Australia,

and it was just shocking to us
that this could still keep happening

and actually other lives
could and would be lost,

so it really became a campaign to save lives.

As parents of a child with severe allergies,

Nadim and Tanya had always
followed the latest research

to help Natasha manage her illness.

They decided to create a charity in her name

in the hope that more research
may provide a cure.

When Natasha was a baby

and she'd had two anaphylactic reactions,

we looked into what research was happening,

what medical research
was happening at the time,

and there was very little,

and so this is 20 years ago, there was nothing
really that gave us hope at the time.

We were asked the question
around the time of the inquest,

what would you like to come from all of this?

We knew we had to do
something about the labelling,

that was the number one,

but it just kept coming back
to us this problem,

for us that we'd had no hope,

Natasha had these allergies

and we were just told to get on
and just do the best we could,

and it was research and
we discovered there was no charity

that was dedicated to funding
allergy research in this country,

What we found is that
there's some research here

and there's research here
and there's research here.

but there hasn't been really
that kind of core to link it up

to actually bring an end to allergic disease,

and that's what we and our foundation really
is set to do, that's what we're doing.

In May 2022,

the foundation announced
funding of a £2.2 million trial

led by the University of Southampton.

The three-year oral immunotherapy (OIT) trial

will be the first major study funded by
The Natasha Allergy Research Foundation.

If successful,

participants with persistent food allergies

will be able to live lives where
they no longer have to avoid popular foods

which might contain traces of allergens.

We set out to prove that the cheapest
and most cost-effective way

for the National Health system
in the United Kingdom

to treat people for their allergies

it's called oral immunotherapy.

And the principle of that is a,
one-hundred-year-old science,

basically, which is, the point is

you take micro dose amounts of
the very food you're allergic to.

so peanuts, for example,

or dairy, which is cow's protein,

and you micro dose the patient,

every few weeks in increasing amounts,

to build up their tolerance,
to the very food.

And after a year,

you can end up for example eating
around six to eight peanuts per day

whereas even a fraction of a peanut
before would have killed you,

that's how dramatic.

But the key thing is
you have to eat that food regularly

in order to stay out of allergy,

so it's not a cure,

it's a way to live with allergy,

to stop it being life-threatening,

This is huge, huge, really very exciting,

because it's going to produce
an enormous amount of data,

clinical data, that can be looked
at by all the scientists

to see just how wonderful and effective
this treatment is going to be.

The fact that we are doing this
at a huge scale

across six university hospitals
all at once in the UK

is to prove to the UK government
that this works,

and therefore should become
the de facto treatment

for all the two million people
in the UK with allergy.

As often in countries around the world,

you can't always rely on
your government to solve problems.

What we did was we met
with around 40 or 50 CEOs

of some of the biggest food companies
in the United Kingdom,

both British companies
and international companies,

and we made a case,
a logical business case, and a moral case

as to why they as businesses
in the food sector,

who make all their money selling food,

should play a part in solving this problem

for the sake of
not just our nation, but humanity.

And we're really happy to say
many of the people

that heard us speak and listened
decided it was the right thing to do.

Prince Charles, who is now King of England,

has talked about how he was moved
to tears about Natasha's story.

So in September 2022,

he personally hosted a meeting of
the world's leading allergy specialists

at Dumfries castle in Scotland.

We got seventeen of the best allergy
scientists from around the world

into one room for two days.

They loved being in a
collaborative situation,

and they all had
amazing specialities within research,

it could be genetics,

it could be the microbiome,

it could be the environment, et cetera,

and everybody brought
something unique to the table.

And over two days

there was so much energy and good will

to come to a point
where we do make allergy history,

and that's something obviously
that is going to

really guide us into what we fund next,

and we're already looking at that now.

King Charles believes very passionately
about solving allergy,

because it is an
environmental problem essentially,

and he's said that
my foundation, the Prince's Foundation,

will work with yours,
Natasha Allergy Research Foundation,

together we'll solve this problem.

That's really amazing news.

For Nadim and Tanya,

the healing process continues, as they
adapt to a life without their daughter,

focusing their energy in ways
their daughter would have approved of.

She did want to be a lawyer,

I mean, she was 15,

so whether she would have gone down
that path or not we'll never know,

but she was a real fighter for justice,

that she was really watching the news,

she was, you know, interested in
all sorts of issues that affect people

and especially the underdogs,

she really didn't like it
when people suffered unfairly.

And so knowing that her name
is actually helping other people

would have been enormous to her.

She was a teenager that had a voice

and that would be very important to her.

After Natasha died,

we, just started framing pictures,

all we had was photos, really,

and so we were looking at pictures
all the time, photos, and framing them

so much so that we didn't really have
any surfaces left to put them on.

And she's looking at us
from every angle that we're in here,

and that's important.

We go to her room, regularly, in her bedroom,

we'll sit at her desk, and we'll work there,

her room is very much
a part of the house still for a while.

Nobody went in there, it was too painful,

and then there was this awful guilt
that we had over that,

and so we really made an effort and
now it's just such a lovely room to go in,

and it, you know, it gives us
an enormous amount of peace.

It has been a hugely difficult
six years for Nadim and Tanya,

but they have found comfort in knowing that
they have changed the law to saved lives.

They remain determined
not to rest till a cure is found.

So one day no one else will have to endure
what they have suffered.

Often we're asked how is it you both are
able to do these things, they say, you know,

as a mother and father
who've lost their child,

how do you have the strength to
keep doing what you do, unrelentingly,

I mean, the truth is, you know,
the answer is very simple, you know,

there are two aspects to it.

One, when you have come from
the worst place in the world,

of your child dying,

you have no more fear,

that is taken from you,
there is no fear left,

because you have nothing more
that you could lose.

And secondly, both Tanya and I and our son,
Alex, Natasha's brother, younger brother,

all three of us have
a very firm Christian faith.

And we believe she's in heaven

and we believe she's looking down

and saying, come on, daddy,
come on, Alex, come on, mummy,

win this, you can do it,

and she's looking down upon us in that way,
and that spurs us on as well,

We know what is right and what is wrong,

and we believe helping people
wherever they are in world,

in Japan, in China, Korea,

Taiwan, Australia,

it's the right thing to do,

and every piece of work
that we do in the Foundation

will be open sourced for
the whole world to benefit.

Join us to make allergy history.