Tragedy changes lives but devastating though tragic events may be they are also the spur to extraordinary achievements – and that cannot be more true than of the Ednan-Laperouse family.
There can be few people in the allergy world who have not have heard about Natasha, the 15 year old daughter of Nadim and Tanya Ednan-Laperouse who died in 2016 after eating a Pret a Manger baguette containing unlabelled sesame seeds to which she was allergic. Indeed, thanks to the tireless work of Tanya and Nadim there are very few people in world outside allergy who have not heard of Natasha. Since her death and especially since the inquest on her death in 2018, despite the pain it must have caused them to rehearse, time after time, the story of Natasha’s death, they have appeard on TV, on the radio, have given hundreds of interviews, written endless articles, met with numerous govenment ministers, addressed countless conferences – all in the cause of raising awareness about allergy and how it can kill.
Natasha’s Law
On the back of this awareness they have also achieved great things. The most notable to date is probably the implementation of Natasha’s Law requiring all PPDS foods (foods PrePacked for Direct Sale – such as the baguette which killed Natasha) to carry full ingredients labelling. Until the implementation of this law, cafés or sandwich shops selling food across the counter, including larger chains such as Pret, were treated as restaurants or catering outlets. This meant that they did not have to include ingredients labelling on their food but could point customers to a notice or just tell them the ingredients if they asked.
Natasha’s Army
As part of the lobbying for Natasha’s Law Nadim and Tanya, her brother and many of her friends started a lobbying charity – NARF (Natasha Allergy Research Foundation) whose mission is to ‘make allergy history – preventing and eradicating allergic disease, starting with food allergy, creating a world that is safe for all individuals’. Obviously NARF is a great vehicle for raising awareness, networking with families with allergies (and, sadly, those who, like themselves, have lost loved ones to allergies) and supporting various allergy initiatives. However its main focus is raising money for and supporting research into the causes of allergy and possible management strategies.
Global Allergy Symposium
Last autumn their first Global Allergy Symposium took place under the wing of the now king’s educational charity, the Prince’s Foundation.
Seventeen leading allergy experts from around the world discussed how environmental factors such as biodiversity loss and climate change could be major risk factors for emerging allergies. Could a reduction in environmental biodiversity affect the human microbiome increasing the risk of developing allergies? What link could there be between genes and the environment – such as the role of indoor pollution in allergies and how farming practices impact allergies.
The Foundation, in the person of the king himself, pledged on going support for NARF.
Oral Immunotherapy trial
Meanwhile the charity has funded a further trial on oral immunotherapy for children and young people with milk and peanut allergies.
The study will take place in five trial sites across the country in Glasgow, Leicester, Sheffield, Newcastle, Imperial College London and Southampton. It will include just over 200 participants, aged 3 to 23, with one or more allergies to cow’s milk and peanut. Children will be aged 6 and above with a peanut allergy, and aged 3+ years for milk allergy.
The study will run over three years and aims to prove that everyday foods can be used as a practical treatment for life threatening food allergies. If it is successful, it will enable the NHS to actually provide cost-effective treatments to people with allergies rather than just advising allergen avoidance.
Recognition
I am sure that, for Tanya and Nadim, success lies in what they have achieved but I hope they also gain some gratification from the recognition they have received – especially since every award they get generates yet another bit of publicity for their cause. I am sure we were not the first but merely the first that I know of to have recognised what they have done when we made them our
- FreeFrom Food Awards Heroes in 2020. But since then……
- NARF was made Breakthrough Charity of the Year by the Third Sector Awards in 2022
- They were both awarded OBE’s ‘in recognition of their services to charity and to people living with allergies’ – and received them from Prince William
- They recieved ‘Industry Recognition Award’ at the Public Sector Catering Awards – at which guests raised £5,060 on the night for the foundation.
For more on the charity and how to support them – and for more about Natasha – see the NARF website.
The cost of being food sensitive