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Charlotte's Helix Blog

News and updates from the Charlotte's Helix project

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The Birth of a Book

27/8/2014

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Well this is exciting!  "Bite Sized", the beautiful, poetic, and moving new work from Fiona Hamilton, that will feature at our fundraising evening in Covent Garden, has just gone into print ready for its publication on 21 September. 

Fiona was invited by her publisher to witness the process of what happens when words get turned into books, and she has written about the experience on Vala Publishing's blog -  read it, and you will have a feel for why it is that those of us lucky enough to have had an advance glimpse at "Bite Sized" are quite so excited to see this book in print and in performance, and as part of the landscape and vocabulary that will inform not only those who care for someone with an eating disorder but just about anyone who cares about anyone or anything. 

PictureFiona Hamilton
For those of us who have personal experience of living with an eating disorder "Bite Sized" speaks volumes of shared experience; for those whose interest comes professionally it is likely to be illuminating; for those who have no experience of either, it connects with what it is to feel confused and vulnerable and a little lost, without losing sight of the absurd and the touching - the hope, the humour, and the love that are the blessings of being human.  It also has an important future ahead of it destined as it is to be used in workshops to enhance understanding of people affected by eating disorders and their carers.

Charlotte's Helix is proud to be a part of the next stage in the life of this book, the part when it sees the light of day, out of those plastic wrapped palettes and onward from bookshop, to spoken word, to shared work of art.


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  • An extract from "Bite Sized" will be performed by Fiona and Downton Abbey's David Robb at our fundraising event in Covent Garden on Thursday September 25, details and tickets available here
  • "Bite Sized" will be launched with a very different performance in Bristol's Tobacco Factory Theatre on Sunday 21 September, details and tickets available here
  • You can read more about "Bite Sized" in advance of its publication here.

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Charlotte's Helix @BBCLondon949

26/8/2014

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PicturePaul, flying solo, without Penny @BBCLondon949
It seems like word is getting out!  BBC London 94.9, a local station with a fair old reach,  has been in touch and featured Charlotte's Helix on today's Breakfast show. Paul Ross, manfully holding the fort all on his tod, took in some company from Erica @HelixAN25, the wonderful Professor Janet Treasure (OBE) from @KingsIoP, and from our very first DNA donor, Miranda @mirandasmurmurs, in attempt to try and cover all the bases of Charlotte's Helix, and anorexia, and #AN25K in a matter of minutes - not an easy task, but we gave it our best shot!

Paul shared with us his own family experience, a niece, thankfully recovering well, in amongst a large family for whom, whatever the genetic vulnerabilities, the development of an eating disorder is by no means a certainty.  Families like Paul's will be amongst those who may benefit in years to come from the kind of genetic research in which #AN25K is involved, and as increase in the scientific knowledge points the way to new treatments and enables possibilities for prevention to be explored for those whose genes may create vulnerability.


Fast and furious, as is the nature of a magazine programme, we hope we got our messages through clean and clear.  The genetic link is not simple; there is no single "anorexia gene" (there will be lots of them!); environment matters; sample size matters (and Janet, I note, has upped the ante a little on our UK numbers, let's see what we can do, together, to achieve them - but let's also remember that 1,000 samples and £100,000 to pay for them will make Charlotte's Helix an unqualified success!); the evidence for genetic connection is getting stronger every day; having an eating disorder is not a choice nor a matter for shame, it is, however, serious and deserves better understanding to enable better treatment and cure - lives are lost to eating disorders and that is why this research is so important.

Thank you: to Paul and to Maxie and to Sarah and to all @BBCLondon949 Breakfast crew for talking to us; to Prof Treasure and Miranda for talking with us, and to everyone involved for helping to spread the word and the work of Charlotte and her Helix!

Link to today's BBC London 94.9 Breakfast show: "Paul Ross Flies Solo" here:
Erica (00:22:15 - 00:26:05) | Prof Treasure (01:22:00 - 01:25:05) | Miranda (02:21:10 - 02:26:10)

Post Script: 

BBC London 949 just couldn't get enough of us!  @VanessaOnAir was in touch following our introduction to the Helix earlier in the day, to ask us to talk some more, and so Sue @Shepherd2210, for Charlotte's Helix, and Amber, a donor to our biobank, and Dr @psychgenomics Breen, for KCL, went on air to talk to @nikkibedi. 

You can listen again to these conversations in the last half hour of the show here
[from 02:30:00 - 02:41:10 (Sue and Amber) and from 02:49:30 - 02:53:00 (Dr Gerome Breen)].


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Beyond the Headline …

24/8/2014

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The Mail on Sunday has been talking to some of the movers and shakers associated with Charlotte’s Helix and AN25K, and Mail journalist @emilykentsmith has written an article quoting our scientific partners, some of our supporters, and our own dear Charlotte, via her book "Throwing Starfish …".  But, before we link to that article, let us clarify the headline and state clearly that NOBODY is born WITH an eating disorder, what one may be "born with" is a genetic vulnerability, not an illness!

As well as creating vulnerabilities, genes may also provide some protections, and environment may work in similar fashion alongside, and for SOME people with the relevant genetic profile, an eating disorder MAY develop.  The detail is what our scientific partners are out to explore: which genes are implicated, how do these genes interact with environment, and might timing be a critical factor?

Now, with all that in mind, please do go read the article:  it is about Charlotte, it is about science, it is about stigma, it is about the power of collaboration to create numbers that will generate knowledge and improve treatment, and it is available to read online here!*
  • To register to add DNA to AN25K: click here
  • To help fund Charlotte's Helix: click here
  • To buy a copy of "Throwing Starfish…", click here (UK), or here (US)

*(Please do beware, and perhaps  “draw a veil” over, an additional online picture which may be triggering to some: not included in the print version - "proof" provided below!)
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That was the week …

15/8/2014

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A round-up of the week's news is due - and what a a week it has been!

Charlotte's Helix was featured on BBC Breakfast on Wednesday morning with support from our partners at Kings College London, a wonderfully articulate and generous Beat Young Ambassador (@swanabi), and by Beat and other BBC sources.  BBC Radios: Wales, Shropshire, and 5 Live have all featured interviews that have talked about Charlotte's Helix.  Thank you to everyone involved, for all that you have done to raise awareness about what Charlotte's Helix is about and where the future of genetic research into eating disorders and other serious mental illnesses is headed. 

Thank you also, very especially, to Charlotte's family.  This will no doubt have been a significant week for them.  I am sure that they have celebrated and remembered and talked a great deal about Charlotte and her legacy and about all that she means to them, and we are so very proud to count them amongst the principal supporters of this endeavour, set up to honour their beautiful, brave, caring, informed and articulate Charlotte.  In their mother's image, her children demonstrated this week that they are their mother's daughters.

Our numbers of registrations have hit some records this week (more news in due course), and we are delighted to welcome all of our new registrants and supporters on board.  Thank you all for watching, listening, learning and participating in this piece of history in the making.

Here are the links, to everything that went on this week and that we are able to point in your direction.  Enjoy!

BBC News: 
Anorexia: UK scientists research DNA link
BBC Radio Shropshire: A Charlotte's Helix spokesperson on Charlotte's Helix (01:50:00)
BBC Radio Wales:  Beat CEO, Susan Ringwood, on Charlotte's Helix (01:43:30)
BBC Radio 5 Live: KCL's Gerome Breen talks genetic research (04:50:00), and
KCL's Gursharan Kalsi and Beat Young Ambassador Abigail Davis talk science & participation (01:36:30)

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Charlotte's Helix on BBC Breakfast

11/8/2014

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Come join us tomorrow morning (Wednesday 13 August) as Charlotte's Helix finds its way to BBC Breakfast's famous red sofa, for talk of genetics, eating disorders, Charlotte Bevan and the future of eating disorder knowledge and treatment.

A Beat young ambassador has been to Kings College London to donate DNA for the #AN25K challenge via Charlotte's Helix, and Kings have been talking "psychgenomics".  The BBC Breakfast crew have travelled from London to Suffolk to find out more about Charlotte, her world and her work, from her family.  Tomorrow's feature will introduce Charlotte's legacy in Charlotte's Helix to a new audience, and will continue to spread Charlotte's word and her confidence in the future to many more than even she was able to touch in her lifetime.

Do join us.  The tea will be hot and brewing from about 6am (GMT).  Coffee available for anyone not from the UK and joining us in spirit, if iplayer live is not available to you (OK, we can make a few other exceptions - but Charlotte had a very special kettle that was really mostly about tea!), and breakfast will be on the table.  We can't wait!  Hope to see lots of you there and to report more here after the event.

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Charlotte's Helix is a Charitable Incorporated Organisation
Registered number 1158227

Contact the Charlotte's Helix team:

info@charlotteshelix.net

Special thanks to 
Emily Bevan and Liana Mensh for the Helix design
Dr. Cynthia Bulik and her UNC team for the AN25K challenge
Beat for start-up funds administration
F.E.A.S.T. for the initial pledges and US donation administration
Registered Address: 11 High Garth | Esher | KT10 9DN | England