April 12, 2014

Thank you, Cynthia Bulik, and AED, and mom & dad

I just realized it has been TWO WEEKS since I was in New York for the Academy for Eating Disorders annual conference. Jeepers. I haven't but barely caught up on email not to mention laundry and bills.

But I want to take time now to thank some people. It's kinda "emotionable," as my kids put it. I can't do this without the risk of sounding braggy, because (squee!) first I have to share that I got an award.

A very nervous Laura with her
lovely and inspirational parents
and wonderful, wonderful hubby.
The AED Meehan/Hartley Award for Public Service and Advocacy, to be precise. I'm rather blown away by this, actually. The list of previous winners is impressive, and I don't take this for granted. When, ten years ago, I took on this advocacy work from my kitchen I had hoped to make some small change in how parents were viewed in the ED field. I accepted the award with full understanding of the shoulders on which I stood, and those I hoped would stand on mine.

I have enjoyed my work. I will treasure the accolades, and will in my dotage surely be boring my grandkids with the generous and funny and humbling speech by Dr. Cynthia Bulik introducing my award. I am deeply grateful to Cindy's confederates, especially Leah Dean, for the tributes. It's way embarrassing, but I am enjoying it. There have been times in the past ten years when knowing that I would be thanked for my rabble-rousing would have seemed like a dream you wake up from, not one we carried home on a brass plate.

Thank you, Cindy.
Thank you.
You see, getting this award from the AED wasn't uncontroversial. Not only are there many hard-working advocates and activists out there in our field but I have not been a particularly easy one to like. I'm a pain in the ass. Instead of joining the advocates in the field to laud and support the direction of advocacy I have been a voice questioning and criticizing "in the family." Not the ideal way to make friends or influence people. I don't think it is an exaggeration to say there are many folks who genuinely resent my voice and my work. So I get it that this was a statement of support for the messy, but necessary, work of challenging paradigms.

I had a speech prepared, but in the moment my eyes were clouded and my glasses unclear so I did not deliver what I'd planned, exactly, but offer it here.

"Today is a great day to be an advocate, when I am given an award and kind words and wear my best shoes.

It isn't always fun, however. A friend here at AED who I consider one of many mentors in this room told me some time back that it isn't about being right, it is about relationships. At the time I resented that, but it was true. You all know this best as this is a room full of people who do relationships for a living.

Today I want to acknowledge some of the relationships that bring me here.

First, my parents, in the front row, who taught me when I see something wrong not to complain, but to do something about it. To respect people even if you disagree with the views they hold.

And my husband, also here today, who is like many of the husbands and partners of advocates the one who made it possible for me to take the time to do this work. We don't appreciate the dads enough. They're less visible, but they are heroes of advocacy. This man is a hero, for letting me turn our dining room table into an international organization and dye my hair blue for DNA research without warning him.

I am deeply grateful to my fellow parent advocates on whose shoulders my work has stood and the momentum and credibility they offer advocates now. 

To Charlotte, in particular, for her example in life and in dying, to get on with it without whining.

Deep gratitude to the parents and community of FEAST, especially those volunteers who now take on the work and keep it going, like Leah Dean our Executive Director and our new Outreach Director, Lisa Laborde, and the board.

Thank you, so much, to my colleagues in the eating disorder professional world, and the advocates, for their support and their mentorship - and their own challenges to me that I learn from every day. Thank you for accepting and even welcoming parents into the advocacy, the field, and into the treatment of our loved ones.

And that is the point. My greatest gratitude goes to my dear daughter, whose illness moved me to do this work. It is the patients who all of us are here for, they are what we all share and care about. Our wonderful, courageous, daughter is my greatest hero."

April 11, 2014

Signposting F.E.A.S.T.

I've got interesting news, and updates, but still too swamped from three trips in a month to organize all my thoughts, but one promise in particular to fulfill. When I was in London last month I met the marvelous social media marvel, Dr. Pooky Knightsmith. She asked specifically if I would write a blog post about F.E.A.S.T. that she could share with her circle. With pleasure and pride, Pooky!

F.E.A.S.T. is the ONLY international eating disorders parent organization. Parent support and advocacy is what we do, and it is all we do. This is not to take away from patient advocacy and support, or pull away from the other wonderful advocacy going on out there but to put a laser-like focus on one important part. Parents are important when it comes to eating disorders. Not because we did something wrong to make our children ill, although for a long time that was the assumption, but because our knowledge and action are probably the most important factor in getting and staying in good treatment -- and following through on that long after treatment ends.

There are other special things about F.E.A.S.T., some of which even members may not know, as our members are caregivers with a lot on their minds!

One is that we are all volunteer: fellow parents and other supporters like leading clinicians and advocates and patient advocates. No one is paid, there is no office or big infrastructure to pay for. Our services and materials are not amateur, however, we hold very high standards for what information we share and the way experience is shared between peers.

Another thing you should know is that F.E.A.S.T. is independent: we neither solicit nor accept donations or sponsorships from treatment providers or companies that sell products to families: that's almost unique in the ED advocacy realm and it matters. In a field with many well-meaning and passionate but ungrounded treatments we do not want to be part of influencing parents in their treatment choices on anything but efficacy. We empower parents with information and evidence to enable them to make good choices on where and how their loved ones get care.

We are collaborative. F.E.A.S.T. is an active partner in initiatives and projects done by other organizations. We participate in conferences, co-write materials, and encourage our members to get involved regionally and nationally and internationally.

We operate according to principles, and under the guidance and oversight of our Board of Directors and our Advisory Panel. Our principles tell you what you need to know about our values, our focus, and our direction.

I'm very proud to have been part of the founding of F.E.A.S.T., and extremely proud to spread the word about our work!

April 9, 2014

Your “cleanse”, your colon and your bad decisions – KEEP THEM TO YOURSELF

Oh, thank you thank you thank you BingeBehavior.com ...


Your “cleanse”, your colon and your bad decisions – KEEP THEM TO YOURSELF

"By promoting a cleanse, you are in essence contributing to the struggle that a person who has an ED will face – and to the bullshit logic that the general public has fallen for, that starving yourself is in some way healthy.  It is not."

Speak it, sister! Speak it!

April 8, 2014

There's a new blog in town, and you're going to like it

F.E.A.S.T., the parent-focused organization I helped to found in 2008, has a new blog: Let's F.E.A.S.T.

Lisa LaBorde, the new Outreach Director for the organization, is the blogger and she's already posted twice about the recent ICED conference and her thoughts on the experience. Go check it out and make sure to subscribe.

While you're at it, don't forget F.E.A.S.T. has a news blog as well, to keep up on what the organization is doing. For example, if you subscribe to that blog you'd know that we just put out some new booklets you will want to print and share!




April 5, 2014

Survey: Body image in adult women

Posted by request:
We invite you to complete a brief online questionnaire investigating wellness and body image in adult women being conducted by researchers at Trinity University in collaboration with Emerge. You must be 18 years or older to participate. You can complete the questionnaire from any computer and it will take approximately 20-25 minutes of your time. In return, you will be entered into a lottery to win a $200 Amazon Gift card, which will be sent via email. Also, you will have made an important contribution to research on women’s health!
Please forward this email to any women (particularly those 25 years or older) you know who might be interested in taking part in this research.