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

Since Natasha Ednan Laperouse died aged 15 in 2016 from a food allergy, her parents, Nadim and Tanya have campaigned to raise awareness and created a new law in the UK for better food labelling.

Nadim and Tanya Ednan Laperouse. Founders, Natasha Allergy Research Foundation

Transcript

00:03

Direct Talk

00:09

Around the world,

00:10

food allergies are increasing
in developed countries,

00:13

especially in children.

00:16

But even adults

00:17

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

00:23

Scientists believe

00:24

that the rapid loss of biodiversity
in our environment

00:27

may be one contributing factor.

00:31

Natasha, the daughter of Nadim
and Tanya Ednan-Laperouse

00:34

had suffered from allergies from childhood

00:37

and was always careful about what she ate.

00:40

But 6 years ago, while setting off on holiday

00:43

she bought a sandwich at a UK airport

00:46

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

00:50

Within hours she was dead.

00:52

She was 15 years old.

00:55

Since her death,

00:56

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

01:01

and trying to find a cure for allergies.

01:04

Direct Talk met them at their home in London.

01:07

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

01:14

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

01:18

and how many people are
actually affected by allergy.

01:23

It's an enormous issue

01:24

and it all started probably
in the 1950s roughly,

01:28

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

01:32

wave of allergic disease, hay fever,

01:35

that has now move on into food allergies,

01:38

sometimes known as the
second wave of allergic disease.

01:41

It's a modern disease,

01:42

it largely affects western worlds,

01:45

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

01:49

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

01:51

lots of chemicals,

01:54

really, removing ourselves from the land.

01:57

And we live very differently
to how our ancestors lived,

02:01

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

02:07

From childhood, she was
allergic to several foods.

02:12

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

02:15

but this time sesame seeds -

02:17

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

02:22

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

02:26

Tragically, she was mid-flight,

02:28

and both her epi pens
which she carried with her everywhere

02:31

did not prevent a
catastrophic allergic reaction.

02:37

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

02:40

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

02:44

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

02:49

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

02:55

it was an allergy to sesame seed,

02:58

which we'd all known she was allergic to.

03:00

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

03:05

essentially, in the United Kingdom.

03:07

When that became abundantly clear

03:10

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

03:15

In the aftermath of their daughter's death,

03:18

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

03:22

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

03:25

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

03:28

happening to another family.

03:30

They decided to put their efforts
into finding a solution.

03:34

Their priority was that
labelling on food should be accurate

03:37

and that food industries
must be made accountable.

03:41

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

03:44

to insist on food labelling.

03:48

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

03:52

and that required me previously
to travel around the world,

03:55

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

03:59

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

04:01

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

04:06

it really became evident the amount of energy

04:08

and drive needed to succeed in that

04:12

was enormous, huge, and all-encompassing,

04:15

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

04:20

or the majority of it, into that sole focus,

04:23

otherwise we may not win.

04:25

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

04:29

but we set about writing hard,

04:32

lots of essays and articles
across all the press,

04:35

and campaigning hard on television
to bring about the change,

04:39

and in the end we won.

04:40

Because our pain was so severe,

04:43

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

04:48

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

04:53

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

04:59

With every growing number
of allergic customers,

05:02

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

05:07

Natasha's law, what that means is that

05:09

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

05:16

it has to carry full ingredient labelling

05:19

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

05:24

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

05:30

it could be partial labelling,
just some ingredients,

05:32

no ingredients,

05:33

and it was very confusing to the public.

05:36

So, this is something that
standardized ingredients labelling.

05:39

So when someone looks at an ingredient label

05:42

they know that it's the full list.

05:44

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

05:48

so that was the first thing.

05:50

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

05:54

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

05:59

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

06:02

that we realised that
the number of people with allergies

06:05

had been on this huge increase,

06:07

not just in this country, but in the world.

06:09

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

06:14

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

06:18

and actually other lives
could and would be lost,

06:22

so it really became a campaign to save lives.

06:26

As parents of a child with severe allergies,

06:29

Nadim and Tanya had always
followed the latest research

06:32

to help Natasha manage her illness.

06:36

They decided to create a charity in her name

06:38

in the hope that more research
may provide a cure.

06:43

When Natasha was a baby

06:44

and she'd had two anaphylactic reactions,

06:47

we looked into what research was happening,

06:49

what medical research
was happening at the time,

06:51

and there was very little,

06:52

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

06:57

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

07:00

what would you like to come from all of this?

07:03

We knew we had to do
something about the labelling,

07:05

that was the number one,

07:07

but it just kept coming back
to us this problem,

07:10

for us that we'd had no hope,

07:12

Natasha had these allergies

07:13

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

07:17

and it was research and
we discovered there was no charity

07:20

that was dedicated to funding
allergy research in this country,

07:25

What we found is that
there's some research here

07:27

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

07:30

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

07:34

to actually bring an end to allergic disease,

07:37

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

07:44

In May 2022,

07:46

the foundation announced
funding of a £2.2 million trial

07:50

led by the University of Southampton.

07:54

The three-year oral immunotherapy (OIT) trial

07:56

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

08:02

If successful,

08:03

participants with persistent food allergies

08:06

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

08:10

which might contain traces of allergens.

08:13

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

08:18

for the National Health system
in the United Kingdom

08:20

to treat people for their allergies

08:23

it's called oral immunotherapy.

08:26

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

08:30

basically, which is, the point is

08:32

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

08:36

so peanuts, for example,

08:37

or dairy, which is cow's protein,

08:40

and you micro dose the patient,

08:43

every few weeks in increasing amounts,

08:46

to build up their tolerance,
to the very food.

08:49

And after a year,

08:51

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

08:55

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

08:59

that's how dramatic.

09:01

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

09:05

in order to stay out of allergy,

09:07

so it's not a cure,

09:09

it's a way to live with allergy,

09:12

to stop it being life-threatening,

09:14

This is huge, huge, really very exciting,

09:17

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

09:20

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

09:24

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

09:29

The fact that we are doing this
at a huge scale

09:31

across six university hospitals
all at once in the UK

09:35

is to prove to the UK government
that this works,

09:39

and therefore should become
the de facto treatment

09:41

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

09:45

As often in countries around the world,

09:47

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

09:51

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

09:56

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

09:59

both British companies
and international companies,

10:02

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

10:06

as to why they as businesses
in the food sector,

10:09

who make all their money selling food,

10:11

should play a part in solving this problem

10:15

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

10:18

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

10:23

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

10:28

Prince Charles, who is now King of England,

10:30

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

10:35

So in September 2022,

10:37

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

10:41

at Dumfries castle in Scotland.

10:45

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

10:50

into one room for two days.

10:53

They loved being in a
collaborative situation,

10:56

and they all had
amazing specialities within research,

11:00

it could be genetics,

11:02

it could be the microbiome,

11:03

it could be the environment, et cetera,

11:06

and everybody brought
something unique to the table.

11:09

And over two days

11:11

there was so much energy and good will

11:15

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

11:18

and that's something obviously
that is going to

11:20

really guide us into what we fund next,

11:24

and we're already looking at that now.

11:25

King Charles believes very passionately
about solving allergy,

11:31

because it is an
environmental problem essentially,

11:34

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

11:37

will work with yours,
Natasha Allergy Research Foundation,

11:40

together we'll solve this problem.

11:42

That's really amazing news.

11:46

For Nadim and Tanya,

11:47

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

11:52

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

11:57

She did want to be a lawyer,

11:58

I mean, she was 15,

11:59

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

12:02

but she was a real fighter for justice,

12:05

that she was really watching the news,

12:08

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

12:13

and especially the underdogs,

12:15

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

12:18

And so knowing that her name
is actually helping other people

12:23

would have been enormous to her.

12:25

She was a teenager that had a voice

12:28

and that would be very important to her.

12:31

After Natasha died,

12:33

we, just started framing pictures,

12:35

all we had was photos, really,

12:37

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

12:42

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

12:45

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

12:50

and that's important.

12:52

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

12:55

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

12:57

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

13:01

Nobody went in there, it was too painful,

13:03

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

13:06

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

13:11

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

13:16

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

13:20

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

13:25

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

13:28

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

13:33

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

13:39

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

13:41

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

13:47

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

13:51

there are two aspects to it.

13:53

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

13:56

of your child dying,

13:58

you have no more fear,

14:00

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

14:03

because you have nothing more
that you could lose.

14:05

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

14:11

all three of us have
a very firm Christian faith.

14:15

And we believe she's in heaven

14:16

and we believe she's looking down

14:18

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

14:22

win this, you can do it,

14:23

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

14:29

We know what is right and what is wrong,

14:31

and we believe helping people
wherever they are in world,

14:34

in Japan, in China, Korea,

14:37

Taiwan, Australia,

14:38

it's the right thing to do,

14:40

and every piece of work
that we do in the Foundation

14:43

will be open sourced for
the whole world to benefit.

14:53

Join us to make allergy history.