September 29, 2013

Happy birthday, Charlotte!

Dozens of people have now pledged their birthdays to our friend, Charlotte. Today is mine for her. I would have been 52 today, but I've decided to stay 51 another year and don't plan to ever take credit for it - one year off I will remain. She didn't ask for it -- but she didn't ask for cancer either.

While I'm thinking of girl friends, some love for my friend, Regina, who gave me lunch out yesterday "for no reason" and a gift to give to "someone else" in the exact spirit of this last week.

To my dear friends and family who have responded so movingly and kindly to another one of Laura's crazy projects. From the 4th grade "K.A.P.P &P" (Kindness to Animals and Plants... and People) to Charlotte's Helix if there's a show in the barn to be put on, I'm there!

Adoring my friends, Robin and Debbi, for turning my neurotic worry into resolve. Grateful to my writing accountability buddy, Cindy, for redefining priorities. For Kathleen for her joyful support and listening ear. For my Band Moms and Dads for theirs. And to my two dear best friends, my mother and my daughter: two women whose counsel and humor improve me daily.

Tickled and grateful for dear Cate for this lovely pic of Charlotte and I. I'm the tall one. Our shoes are divine.

To old friends and new, thank you for being there. I am truly grateful.

Goodbye 51, hello 51 again. Happy Birthday, dear Charlotte. I love you so much. On Cat.

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

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.

September 24, 2013

Huff Po, a twitterlanche, and even a movie star

The start of the Charlotte's Helix project went well yesterday, if sleep deprived. I got up at 5am London time and that was midnight for me. Charlotte managed to blog and tweet and email and FB while having chemo. I found out that nothing goes as quickly as it should even if you've planned it for two months.

The Charlotte's Helix site was announced at 5am London time. Yes, Charlotte, you were first but this is my blog and you cheated: I had to have coffee first.

I announced my birthday donation, too.

Then the Twitter account, and there was an avalanche, a twitter-lanche, of people out there in the world who caught on and the "following" and tweeting and retweeting was staggering. I'm still not caught up with all the heart-warming support throughout the world. Charlotte has surely blistered her fingertips responding. So many lovely friends.

Oh, Facebook... stupendous support and connecting there. By the end of the day in the UK there had been 128 "likes" on the page and countless, countless shares and likes and links. I woke up this morning to 187 and pages and pages of posts.

LinkedIn, also. Then hundreds of emails. And the Helix site stats went straight upward from there.

Somewhere in there I received a new batch of video clips for Charlotte's bonus birthdays including one from a movie star - to go with the greetings from a roller coaster, the Happy Birthday song in an Intensive Care Unit, numerous dogs, party hats, and an actual Marching Band.

And the Huffington Post published a blog post on the project.

Naturally, there were glitches. Non-working links, strange error messages, a calendar problem, and the time when both Charlotte and my emails simply gave up and wouldn't send or receive!

The donations began, too: we heard from people in at least five countries that donations were on their way.

There's a fundraiser involving lavendar sachets. There are plans for armbands.

Birthdays were donated, too: I haven't gone back and counted but at least a dozen or so.

I did get one panicked message asking if this all meant that Charlotte was gone, to which I replied that she is not only alive but with far more stamina than I!

Can I just say this? Working on this with Charlotte and others has been a lot of fun. We're not sitting around in existential dread or thinking more than a day ahead, we're just getting stuff done. So many people are doing the same and it is wonderful.

So, I've explained the Huff Po and the twitterlanche but you'll have to find the actor on your own. He's on the Helix site somewhere.

September 23, 2013

I'm donating my birthday to Charlotte - but I need your help

So, one of my dearest friends, Charlotte, is dying of cancer. Her doctors are not promising her any more birthdays, so I've decided to give her mine: September 29.

Instead of sending me a gift, let's give Charlotte something?

When I got the news from Charlotte I didn't know what to do. We were going to need to have something positive and meaningful to channel our distress. The result is Charlotte's Helix, a somewhat crazy bet that we could raise enough money and volunteers to bring the AN25K challenge to Charlotte's country: the UK. It is a project that matters to her and to many of us and holds the promise of changing the future for families facing eating disorders and, really, for all mental health.

Some amazing scientists and researchers in the US and UK are working to make this happen. Advocacy organizations in the UK and US have offered to help with getting the funds where they need to be.

So, it is up to us: all of Charlotte's friends and family and their friends and family around the world to change the course of medical history in Charlotte's name. If you don't know Charlotte, you probably know someone who does: she's like that. If you don't, you should. Visit the Helix to get to know her.

Instead of a present, what is needed is a donation of any amount in any currency to Charlotte's Helix. If you have $5, we need it. If you can spare £1000: you have just paid for 10 DNA samples and become part of scientific history. Want to donate more: you can have a few more of my birthdays as a bonus.

This year instead of "liking" me on Facebook, like the Charlotte's Helix page. And "share" it. And forward it and link it and blog it and tweet it and make sure the world sees it. Make the Helix go viral.

Don't call me on my birthday: call and get information on enrolling in a study in your country, or call a journalist to tell them about this project. Make the Helix matter.

Instead of sending me a birthday greeting send YOUR birthday to Charlotte, too. Support her by becoming part of the Helix coalition. Contact me and we'll find a way.

I'm angry at hell at cancer at the moment. I'm hopeful as can be about the prospects for curing eating disorders with the help of good research. I've resolved to cry less and laugh more because if Charlotte can talk about the "the upsides of dying young" the least any of us can do is try to make this one dream come true NOW.