Charlotte's message
I was dragged kicking and screaming into the world of parent advocacy in 2009, after my daughter became ill with anorexia nervosa and I realised I had fallen down a rabbit hole of blame, misinformation, outdated ideas and practices and a systemic lack of knowledge and care throughout not only our mental health system in the NHS, but throughout the world.
I stumbled upon the Around the Dinner Table forum and F.E.A.S.T., plucked up my courage and posted my first post. The warmth and help I received from my fellow contributors was the first time I felt any sort of hope for our family. The relief was palpable and, with a lot of time and support, my daughter is now recovered. And I am darn proud of not only her and our family, but also that I can pass on my knowledge and experience to other families in trouble and watch their children grow and recover.
It is not all happy endings though. Treatment for eating disorder patients is woeful and inadequate and, in some cases, dangerous.
The Helix project is not only about collecting and analysing samples. It is a way for me to bring eating disorders into the consciousness of my many friends, who exist in a world untouched by this mental health problem. I hope that by connecting my two worlds, people will become educated about what an eating disorder is - nobody's fault and nobody's choice - and stop perceiving eating disorder patients as wilful, vain or attention seeking.
I hope that the Helix project will, in some small way, give future generations the opportunity to know the "markers" and to be prepared and take the necessary steps to guard against an eating disorder. I also hope it will show the way for better treatment options so that families don't have to go through the hell that we did.
Charlotte Bevan
August, 2013
I stumbled upon the Around the Dinner Table forum and F.E.A.S.T., plucked up my courage and posted my first post. The warmth and help I received from my fellow contributors was the first time I felt any sort of hope for our family. The relief was palpable and, with a lot of time and support, my daughter is now recovered. And I am darn proud of not only her and our family, but also that I can pass on my knowledge and experience to other families in trouble and watch their children grow and recover.
It is not all happy endings though. Treatment for eating disorder patients is woeful and inadequate and, in some cases, dangerous.
The Helix project is not only about collecting and analysing samples. It is a way for me to bring eating disorders into the consciousness of my many friends, who exist in a world untouched by this mental health problem. I hope that by connecting my two worlds, people will become educated about what an eating disorder is - nobody's fault and nobody's choice - and stop perceiving eating disorder patients as wilful, vain or attention seeking.
I hope that the Helix project will, in some small way, give future generations the opportunity to know the "markers" and to be prepared and take the necessary steps to guard against an eating disorder. I also hope it will show the way for better treatment options so that families don't have to go through the hell that we did.
Charlotte Bevan
August, 2013
We made this happenDid you know that the risk of developing an eating disorder is largely genetic?
Scientists have known for some time that there is a genetic link, but now with newer technology, a lowering of the costs associated with genomic research, and cooperation around the world, we finally have the opportunity to "crack the code" and understand what makes some people more predisposed to an eating disorder. This opens the door to new insights and effective treatments. This is site is being archived, but it was here to help you enroll in the study, fund-raise for the study, and share information on eating disorders, genetics, and exciting research progress.
What is Charlotte's Helix?
Charlotte's Helix was founded in the UK to honour the eating disorder advocacy work of Charlotte Bevan. It was a part of a global effort to collect DNA samples from over 25,000 individuals who have had anorexia at any time in their life, otherwise known as #AN25K.
The goal of Charlotte’s Helix was to add at least 1,000 UK DNA samples to #AN25K |
Thank You!
|
Charlotte's Helix during Prime Minister's Questions
In memoriam
Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014. Her friends and family mourn her loss and commit to carrying on her legacy. This project lives on in the memories of the many international friends who got it going and kept it going in the UK as well as how this citizen science project inspired and drove other projects like it. If anyone needs to reach the volunteers in the future we can be found at this email.
