Professor Cindy Bulik (@cbulik), lead researcher for the AN25K project (amongst many other impressive titles), is in London on Monday 29, just for the day, and @BBCWomansHour are keen to talk to her about her research and her work with Charlotte's Helix.
Eating disorders have been much in the news recently, and Prof Bulik will be appearing with Prof Ulrike Schmidt from the Maudsley hospital, and their talk will be of science, research, and eating disorders.
Why is genetic research important? How has AN25K come to the UK? What are the team hoping it will achieve? Tune in to find out.
I got the school on board as they had done 'sock it' before, therefore knew what it was about. I suggested Charlotte's Helix instead of Beat, being an up and coming eating disorder charity. I wrote a letter with the head boy to the parents and guardians of the children in school, explaining who Charlotte's Helix are and about eating disorder awareness week. We have to have all our letters translated into Welsh which may be the first time Charlotte's Helix has been seen in the welsh language*.
'Sock it' is a fun and easy way of raising awareness of eating disorders whilst raising awareness of Charlotte's Helix and what the charity is achieving too.
From the Editor: Thank you Zac, and all at Llanfyllin High School, from all at Team Charlotte's Helix! It looks like you had a lot of fun, with the socks, with the snake, and with the construction of the day, and we are so very grateful for the awareness and the funds - and, just for the record, *it is!
Y Ddraig Goch ddyry gychwyn!
(Rough translation - The Red Dragon leads the way!)
Today is a day when many of us are remembering Charlotte. Some friends have also been reminiscing and thinking about what we have managed to achieve in her name in the year since we lost her (exactly a year to the day). Who would have thought a year ago, with Charlotte’s Helix still quite fresh off its starting blocks, that we would have managed to spread her word quite so far and wide?
It was, I will freely admit, a ropey start to the year. Losing Charlotte was a blow and we weren’t quite sure how to move on from it (how Charlotte would have drummed her fingers and laughed at us all for being so distracted and not getting on with the job in hand!).
But we managed to rally and to take the opportunity of Laura Collins being in town in March to have a bit of a gathering at the house of an old school friend of Charlotte’s. Friends, family and supporters of the project named for Charlotte gathered to decide how best to proceed from where she left us. Number one priority for all the sensible and business-minded folk in the room was to apply to the Charity Commission for some legal status, and so that is what we planned first. We formed a small team, each with a job to do, and set about putting together our application for formal recognition.
In the meantime, we took some other opportunities, of being in the Houses of Parliament, for example, to talk to some MPs about our project, and we happened upon one male MP who had suffered from anorexia and was more than happy to donate blood to our project and to do so openly to encourage others to come forward, and two of his colleagues came along to support him with healthy control samples. One of those colleagues, Caroline Nokes, already a supporter of Beat, further supported us by raising our cause and our profile at PMQ’s and so brought us to the attention of the Prime Minister - which would have made Charlotte shriek - all in all a great day for Charlotte’s Helix.
It so happens that our donating MP turned out to be one of the most famous of his breed by the end of the year, but we shall draw a veil over the whys and wherefores as it has no relevance whatsoever to our cause; suffice to say that we will be forever grateful for the good work that he did so very graciously for Charlotte's Helix.
From here the floodgates opened as the media got hold of the story - the Independent on Sunday ran a piece on us, and then BBC TV came calling eager to run a piece on news to them - anorexia has provably (yes provably - not probably) genetic origin and there is important research to be done to discover the detail - if this is true, they said, this could revolutionise the way that people think about anorexia! Music to our ears, and on the very day that BBC Breakfast broadcast on the subject of Charlotte’s Helix, and KCL, and the work that we are doing together with UNC, and with Susan Ringwood (Chief Executive of Beat, sitting on the same red sofa where I first saw Charlotte) talking about Charlotte, and Charlotte’s family remembering her at home, the Charity Commission also granted us status as a Charitable Incorporated Organisation - Kismet!
Word spread further from here, via local radio stations, other press pieces - The Mail on Sunday, and another piece from The Independent - and our numbers of volunteers coming forward soared. We were overwhelmed by the numbers of people who wanted to help with this research and touched by the stories that we heard and the enthusiasm we encountered from an incredibly wide range of people. We are well on track as a result of all of this, and the support of some loyal tweeters and bloggers and others using social media or personal and local connections, toward banking our original target of 1,000 DNA samples from the UK by 2016 - if we can do more and increase these numbers that would be icing on our cake.
We have had other support too. Artists in the form of internationally renowned opera singers, and famous actors, and home grown writers with stories to tell enabled us to put on a show in a church in Covent Garden. One of the oldest and most beautiful churches in London, in fact, with acoustics that maybe really have to be experienced with operatic voices at full tilt to be fully appreciated. We gathered nearly 250 supporters on a late September night and were entertained in unique and intimate style with an evening that was, all modesty put to one side just for a moment, magnificent! We enjoyed it so much, and Charlotte’s family assured that she would have loved it too, and we carried her with us during the show and were glad to be able to honour her with an evening that didn’t disappoint.
So here we are at the beginning of a new year, saddened as we remember what happened a year ago today, contemplating our plans for 2015 for Charlotte’s Helix, and once again looking for opportunities to build on what has already been achieved in Charlotte’s name. We are proud to be able to help carry on this work that will contribute to changing the way the world thinks about eating disorders - what it means to have one; where are the responsibilities once someone is diagnosed with one; how we help anyone get better - through research into an illness that has so often been misunderstood as it co-opts biology to affect the mind and leaves confusion in its wake. Departed only in body, the clear workings of Charlotte’s mind on this subject are still helping to shape a better future for many. We are pretty sure that she would be very proud too of this collaboration - of scientists and volunteers offering DNA, funds, time, expertise - as it develops and forms the beating heart of Charlotte’s Helix and works to bring her hopes for the future to life. We have a way to go yet, we need more funds, we need as many DNA samples as we can get and we need everyone who already knows anything about us to help spread the word as far and as wide as is possible. Thank you to everyone who has already contributed and we look forward to spreading our net even wider in 2015.
Here’s to you Charlotte! Raising a toast in your memory today. We love you, we thank you, we miss you! X
We hope that everyone enjoys a holiday season full of peace, goodwill, and whatever else you are hoping for. Just to let you all know that we remain open for business for anyone wanting to donate to the Helix. DNA registrations will be collected from here and passed onto KCL (and funds are always welcome too, of course!) Our partners at KCL, however, are running a reduced service over the week of Christmas and the New Year and so it may take an extra week to hear back from them - it still shouldn't take more than three weeks at the outside (and if it does, let us know and we can investigate for you). All donations gratefully received, as always.
Looking forward to 2015 and, we hope, a very busy year!
We had a great chat with @BBCRADIOKENT yesterday morning. A three-way, with Charlotte's Helix, Jenny Langley and Julia George from the mid-morning show.
You can "listen again" to us here (from about 02:07:00), and hear what we all had to say, but I am pleased to tell you that there was no controversy - we were all in agreement that looking for genetic information is a positive, that the technologies that lie behind the kind of research that we are involved with are "amazing", and that genetic research into eating disorders and other mental health issues makes a lot of sense.
Thank you to BBC Radio Kent for inviting us to come and talk, thank you to Julia George for being a great host and for asking intelligent and thoughtful questions, and thank you to everyone and anyone taking the time to listen to what we had to say.
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