This isn't the first time I've blogged about how real people you know only through the internet can become. In this case, I know Charlotte through FB postings and reading her blog--she is an eating disorder activist, the mother of a daughter who had anorexia, and also a woman who has been given the news that she likely will not live much longer.
What is she doing with the time she has left? Leaving an amazing legacy.
Charlotte's Helix is an international collaboration seeking to bring the AN25K genetics initiative to the UK, in honor of the eating disorder advocacy work of Charlotte Bevan.
The goal of Charlotte’s Helix is to add at least 1,000 DNA samples from individuals with a lifetime history of anorexia nervosa in the UK to this international genetics initiative. Under the direction of Professor Cynthia Bulik, AN25K has the ambitious goal of collecting 25,000 DNA samples in order to"crack the code" that makes some people predisposed to an eating disorder.
I will be donating money, tweeting, FBing and, most importantly, talking to Social Butterfly about donating her DNA (since she had several piercings removed to participate in an MRI study, it won't be a hard sell). The above snippet talks about the UK, but the US arm of the study is being facilitated by University of North Carolina Chapel Hill Medical School.
How important my presence in the eating disorder community has become to me was highlighted within the last couple of weeks. I was presented with three opportunities and (even for a person that is clearly addicted to juggling life the way I am, I knew I could only realistically do two of them) need to make a hard choice.
I turned down a writing opportunity that I was so excited about that I'd said, "Yes!" without even thinking twice when it was originally proposed. I had to reconsider because I realized that eating disorder activism has become my calling--and is also a place where my writing will be valuable.
If you are so disposed, please spread the word about Charlotte's Helix--it's hard to know that Charlotte will be leaving, but lovely to know that she's leaving a legacy.