September 28, 2013

Skip a latte, bring your lunch, raid a piggy bank

I was pleased to be published in the Huffington Post this week with an article about the Charlotte's Helix project. I've tried to tell the story in a few ways in different places. The bottom line is this: I'm coping with my friend's prognosis by throwing myself into this project. But: this is not make-work. This project stands on its own: none of us would doing it if it did not.

The goal is £100,000 in private donations to make this happen. (about $160K US)

I want you to donate, yes you, and I'm going to anticipate some of your concerns.

This is about the UK

Wherever YOU live, your family's DNA isn't going to have sufficient power unless they get the 25,000 needed. DNA doesn't care about national boundaries. This is an international effort. The UK could, I have heard, add 4,000 samples to the initiative. That's 15% of the total just from one island of eager participants. In the US and Australia the study is free to enter - you even get an Amazon certificate - from a generous charitable donation. If we want to add the UK we have to find the money. If we want numbers we need to expand.

It should be free

So should chocolate. And beer. But they're not. Lab work doesn't come out of the tap and there is no human right to study administration and data processing. We should have governments and universities that devote themselves only to eating disorder research full time, but we don't. Someone has to do the work and there are no ED leprochauns.

I only have $10

A little bit from each of a lot of people would get this project done. I run scenarios in my head like 10,000 people times $15, or 150 people with $1000 each, or one person with £50,000 plus two with £10.....  I picture 1,000 bake sales and car washes... The point is you don't have to give a lot but why hesitate to give a little. It adds up.

DNA research won't tell us much

Genomics is making enormous strides right now, today. Schizophrenia research shot forward in the past few months. Knowing what is behind predisposition to anorexia would be medical history. And no, not just to find a pill: to understand who is predisposed and why is key to targeted and succesful treatment. Knowing if there is one anorexia nervosa or five of them with different underpinnings could mean treating the right people in the right way first. We could even talk about meaningful prevention.

It is only about anorexia nervosa

This study is, right now, but it has implications for all eating disorders and psychiatric illness. There are good reasons for why this starts with anorexia, involving statistical analysis and limited funds, but with  funding researchers COULD add the full spectrum. There's no prejudice against non-anorexia diagnoses and no lack of caring. I'm not waiting for every country and every diagnosis to be added to care about this one. If you care about bulimia and binge eating and the full range of eating disorders then you need this study to be successful.

It's too ambitious

Life is crap sometimes. I can respond with bitterness, by withdrawing, or by trying to make things better for others. I can join in a big dream. I really want the Helix project to thrive. I want to see lots of folks to do a little - send a little, spread the word a little, get a little involved - to prove it isn't foolish or silly to try. I'd rather bet on an ambitious dream than do nothing and complain. I hate ED. I really hate ED. And this isn't that crazy a goal - in fact it's quite reasonable. It just hasn't been done in THIS community, yet.

It could take 1,000 bake sales and car washes, or a few galas and lots of piggy bank raiding, but it is in all of our interest to make this happen.

Do your little bit. Tweet once. "Like" something. Tell a friend. Send a check. Make supporting Charlotte's Helix a thumb in the eye of Ed.

If you have ideas on how to help, email me laura@charlotteshelix.net

p.s. if you read the Huff Po piece and like it, please do me the favor of liking, sharing, or commenting on it? Not for my ego, but because that is how media outlets decide what stories to feature.

4 comments:

  1. Great post. I read some pretty scathing scepticism on Twitter about the project (people suggesting that it was looking for a genetic mutation, which is very reductionist criticism). This post explains, better than I can, about the sophistication of the research and that it's about gene expression, biomarkers, etc., rather than anything at the chromosome level.
    I am pleased to have donated my £10. It is all I can afford at the moment but I hope that lots of £10s will come in and that people like you and Charlotte will continue to fight for cutting edge research into eating disorders.

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  2. Thank you, LindyB. I hear those criticisms too and they make me sad because they are reactive and often not well-informed. It's a complex topic and an emotional one and those are the hardest to get good communication going about!

    So glad you're supportive and engaging in the discussion. It will take time for folks to wrap heads around the possible benefits, and the limits.

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  3. I am doing all I can from my corner of the internet. I will also bring this up with the parents I mentor as they are doing FBT with their children. This work is so important.

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  4. Thank you, Jenn! It's great to be part of a worldwide network that can ACT and collaborate!

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