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Genetics Research, Advocacy, and Charlotte

By Helen Missen, F.E.A.S.T Volunteer and UK Eating Disorders Parent Advocate

Somewhere in the history of F.E.A.S.T. are the legends that we hold up as having helped us to navigate the new way of life that we all fall into, through our encounter with an eating disorder. One such revered person is Charlotte Bevan; a dynamic, no nonsense Brit with the dry wit that is integral to our way of life, and the bravado to match. 

Charlotte cut to the essence of why parents are vital in the treatment of eating disorders; and just as the Titanic forged its path, so did Charlotte within the field of eating disorders, both on this side of the pond and the American side. Charlotte was the seemingly inaugural parent voice with the power of belief behind her. She crossed the social divide and the divide that was still present a decade ago between the clinicians and the families.

Charlotte had Janet Treasure on speed dial, and she is mentioned in books such as Carrie Arnold’s ‘Decoding Anorexia’. Charlotte was the town crier for eating disorders a decade ago. In the UK we all emerged in the wake that she produced out on the seas. We threw ourselves into advocacy and the search for parity in care, freedom from eating disorders and research into the realities that we faced daily. 

Within this, we heard of a new piece of research being produced; the murmurings of genetics had been on our lips for a year or two. At last, a clinical researcher, Dr. Cynthia Bulik, was actually putting her mind to finding some real data from actual DNA samples! At that time, the samples were being provided in some areas of the world, funded by private philanthropic families, and was called ANGI (Anorexia Nervosa Genetics Initiative). 

Charlotte, in her inevitable way, chatted with a few of us in the UK and then rang Cynthia Bulik directly, demanding to know why British blood wasn’t ‘good enough’ to be used…..and the rest, they say, is history! 

The Titanic is always remembered for its historical sinking, and the iceberg in Charlotte’s life was breast cancer. 

Before her death, Charlotte made a few of us promise that we would always fly her flag, and create a legacy to honor her work within the UK eating disorder network. Three F.E.A.S.T. mums from the UK started Charlotte’s Helix, with an incredible board of trustees, and we set about throwing out our net. The UK arm of ANGI became Charlotte’s Helix, which in turn has become EDGI (Eating Disorders Genetics Initiative) UK.  

Charlotte left us with the task of providing Kings College London with both DNA and funding. Under the leadership of Prof. Gerome Breen KCL became our sample collectors, with the largest mental health genome bank in Europe, and we were in good hands. She had set us the target of 1000 DNA samples and £100,000. Sometimes we laughed over her expectations and the fact that she had left us to do the hard work; she would be chortling in heaven, we felt. Within 3 years we had gathered over 1000 volunteer samples and approximately £70,000. The ‘E’ in FEAST stands for Empowered for good reason.

You may well ask why I am writing this now, so many years on? 

EDGI UK was launched in February 2020, weeks before the pandemic threw the UK into lockdown; and we, as Charlotte’s Helix trustees, were invited to the launch party. We had handed the charity over to Beat for safe keeping, enabling Gerome to carry on his incredible work; this was our final soirée. 

The party in London was not the last contact that we would have with Gerome, as the equally passionate Suzanne Baker and I have crossed Gerome’s path again, with the creation of a new initiative: The Hearts Minds Genes Coalition for Eating Disorders. 

Again we are focusing on the science and the heritability of eating disorders, whilst holding policy makers to account around stigma, research funding and the obesity strategy in the UK. We are working alongside the chair of the Royal College of Psychiatry, Hope Virgo, Renee McGregor and of course, Gerome Breen. Janet Treasure is also involved. 

EDGI is celebrating its anniversary this September and are once again asking for our help at FEAST. 

If you are in the UK and have a loved one with an Eating Disorder (any eating disorder) who is 16 or over, or if you know an adult who feels they have had an eating disorder and not been diagnosed, and would like to give a sample (saliva) then please do contact me on helenm@feast-ed.org, or the EDGI team on Dina.1.monssen@kcl.ac.uk.

We are also hoping that anyone who took part in giving a DNA sample for Charlotte’s Helix, be that blood or saliva, would be willing to offer an anonymous quote to be used for EDGI’s social media anniversary promotion. 

Let’s fly the flag for Charlotte and for important research once again!

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1 Comment

  1. Fiona Bromelow

    I remember Charlotte for her wit, her friendship and her enormous drive. Please if you are in England and haven’t already given a sample do contact Helen or the EDGI team. It’s wonderful that the research is branching out to include all Eating Disorders. If you are in one of the other Nations of the UK unfortunately AS YET they can’t take your sample. I’m sure that this partly for reasons of funding but it also becase Dr Breen’s team is unique worldwide in working alongside the NHS in matching the samples with NHS England patient notes (with the full consent of the patient of course) and the records aren’t quite the same in Wales, Scotland and Northern Ireland. I’m sure this can be overcome with time, and as a newly adopted Scot, a bit of pressure, so, channelling Charlotte I cry “what’s wrong with Scottish spit” and “give your sample if you can”

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