December 19, 2013

Holidays

I'm taking one this year. A holiday. Time off. "Out of Office."

If you don't hear from me, it's not you, it's me. I could use a break.

I'll be back. Probably.

December 18, 2013

When Anorexia Came to Visit: Families talk about how an eating disorder invaded their lives

I've been quite busy lately, and my to-read stack was getting out of control. I fell behind, and so it was a really cool surprise to finally get to read the final version of Bev Mattock's book, When Anorexia Came to Visit today. You never know what gems are just sitting there.

I have a rule that I don't review books I don't genuinely like. I don't endorse books, even of friends, unless I'm ready to live with having my friends and readers go out and buy it and tell me about it later.

I really, really like this book. And not because I wrote a little intro or because I  know several of the families inside, including the author -- though that is an extra thrill.

I like this book, and I'm endorsing it warmly, because it tells the world what I know is true and important. It shows real families facing eating disorders with all the heroic, courageous, exhausting love that I know is going on all over the world. If we want to beat the stereotypes and truly change the way parents and families are regarded this is a 20-dose package of that medicine. These perfectly normal yet also extraordinarily challenged families are the antidote to images of over-involved, uncaring, crazed, clueless parents. Yet each is unique: there is no one solution or one lesson.

Each family's story, wonderfully edited by Mattocks, is a view to family commitment and engagement.

Families who have been part of the F.E.A.S.T. and Around the Dinner Table community will cheer for the families and even recognize a few!

Another feature of this book is that all these families are in the UK. This adds to our library of family stories that includes My Kid is Back with Australian families and Just Tell Her To Stop with US families. The healthcare systems and culture of each country contribute to the relevance of each family's story. Although I considered myself familiar with the particular issues in the UK I learned a great deal more here than I knew before.

December 17, 2013

Why you want to buy your ticket to Dallas for the 3rd F.E.A.S.T. conference TODAY

10.     Ticket prices are not going down.
9.       It's Dallas. Dallas!
8.       You will meet other parents who get you.
7.       You will BE one of the parents who gets others.
6.       Your story, as a parent, will help other families
5.       Clinicians want to meet families, real families, and learn from them.
4.       F.E.A.S.T. offers an advertising-free, marketing-free, non-profit event.
3.       Real meals. Sitting down.
2.       The best science and practical information, designed FOR parents
1.       Where else can you wear Ruby Slippers?

Join me and the F.E.A.S.T. community January 31 & February 1 for an educational, refreshing, and empowering event!

December 16, 2013

Today's Tweetchat on genetics features AN25K and Charlotte's Helix

If you've never watched or participated in a Tweetchat then this is your lucky day! Join the party in four hours wherever you are. I'll be there to answer questions about Charlotte's Helix and I'm looking forward to Dr. Cynthia Bulik and Gerome Breen (otherwise known as +Cynthia Bulik and +Gerome Breen) making genetics "approachable" and learning more about the potential of the AN25K initiative.

You'll recognize other names as well, like @edbites and @aedweb.

I know not everyone gets as excited as I do over this topic, but I believe you WOULD if you knew just how much is happening now and in the near future.

If you don't "tweet" and think "tweetchat" sounds like the beginning of a tongue twister please drop by anyway? You can just watch, and it doesn't require any special skills. I'd sure appreciate the support!

#AEDCHAT: DECEMBER 16, 2013

"Making Eating Disorders Genetics Approachable & Meaningful: What are ANGI, AN25K and Charlotte's Helix?"

Monday, December 16
12 pm EST

Bulik, 


Breen, Charlotte's 



















Helix

with Cynthia M. Bulik, PhD, FAED of the UNC Center for Excellence in Eating Disorders and Gerome Breen, PhD, Senior Lecturer, MRC SGDP Centre & Theme Lead for Bioresource and Genomics at NIHR Biomedical Research Centre, IOP, KCL; And Special Guests: Laura Collins and Charlotte's Helix
Moderators:  Bridget WhitlowLMFTLauren Mulheim, PsyD, CEDS and Evelyn Tribole, MS, RD
Genes do not act alone. Join this discussion on the role that DNA/genes and environment play in the risk of eating disorders.

December 12, 2013

Who is Jenny, what is a PITA mom, and why each starfish matters

So, if you read my new book with Charlotte Bevan you know that we have different but complementary ways of being activists. Charlotte "throws" beached starfish and I try to get the sea to come back up and revive them all.

There is a unique project going on right now around one "starfish" that you may be interested in.

It involves an eating disorder patient who has no family support on the ground. So, a group of moms around the world have adopted her. They support her through meals by Skype, they advocate for her with doctors, and they are campaigning on her behalf with the insurance company.

Honestly, I've never seen anything like it. It's extraordinary in every sense.

Want to help? Go to the Facebook page for the project and fire up your Twitter account (or start one, already, it matters).

Want to know what "PITA" stands for? You'll have to go see.

December 4, 2013

Charlotte throws 'em, I try to raise the tide

Charlotte Bevan and I have written a book together, and it was published this week. The title is Throwing Starfish Across the Sea.
paperback version
amazon.com


In this new book Charlotte and I share some of the most important things we personally tell parents facing an eating disorder diagnosis in the family. We both know how shocking and frightening it is and what a heroic job parents can do when they have the information and the support they need.

We have heard the concerns, fears, and magical thinking of those new to this and we wanted to be able to furnish mothers and fathers with the most essential tools:

  • Information
  • Other parents
  • Big Girl Pants (also available in male and unisex)

The book is a labor of love for us both, but also the end of many things. Charlotte has terminal breast cancer and I am leaving the full-time eating disorder advocacy world behind. We wanted to leave something behind, together.

We also wanted our work to support the future of ED science, which is why both of us are donating the book sales to Charlotte's Helix - an international initiative to help crack the code of eating disorders.

You can purchase the book on Amazon in any country, or as an ebook so you can read it today. You can also purchase on CreateSpace, which charges the same amount but gives a higher amount to the Helix.

We also need to acknowledge the great debt of gratitude we owe our many friends who helped inspire, proofread, tweak, and encourage us as we sped this along. Special thanks to Lisa Wright for design, and our families for support.




If all diseases were treated like mental illness

I'd like to give this to everyone I know who does NOT live in the warm lovely but, regrettably, small world of mental health activists:

If physical diseases were treated like mental illness

November 27, 2013

Hair dye is therapy

My friend Charlotte is out of surgery and stable. I coped with waiting to hear that by dyeing my hair blue.

She and I scandalized our daughters this summer when Charlotte messed up her kitchen indulging my whim the first time. This time, my daughter helped.

Well, C, in your honor!



November 25, 2013

Science without fisticuffs: well done, Chris Thornton

Once in a long while someone stands up and talks sense without polemics or something to sell.

Chris Thornton's online video talk, "The Model & the Clinician: Who Comes First," published by ANZAED, is such a moment. And no, it is not about Size Zero Models, it is treatment models, silly!

Would you like to hear the real numbers on Family-Based Maudsley Treatment without hyperbole or apology? You may not like the answers if you are on a "side" on this -- which none of us should be. That alone makes the 36 minutes well spent.

Are you interested in what the data tell us about manual-based treatment, about clinical skill, and why skilled therapists need to have confidence, humility, and science literacy, this is time well spent.

It is time for us to stop being "pro" and "anti" Maudsley and CBT and Motivational Interviewing and CRT and on and on. It is time to stop pitting clinician against manual. It is time for a really robust discussion about why we do what we do, and why many people of goodwill disagree.

November 24, 2013

Charlotte's Helix starts collecting DNA

This was quite a week over at Charlotte's Helix. If you haven't been following it, make sure to bookmark or subscribe to the Helix blog.

For one thing, Kings College London signed on to do the DNA collection side of the project. This is big. Really big!

But this is huge: they started taking collections the day after it was announced. The kind folks putting on the National Carers Conference for Eating Disorders at the Maudsley hospital (yes, THAT hospital) were kind enough to not only put the Helix project on the stage but also to facilitate a first blood draw: from Charlotte's dear friend Miranda B., the blogger and mental health activist.

I am so glad. It has been a very difficult week for Charlotte Bevan. She had a terrible infection, bad reaction to antibiotics, and dreadful pain. She was hospitalized, which she hates, and then moved hospitals, where she is awaiting surgery.

We are all hoping that the knowledge that Charlotte's Helix is collecting DNA is a warm spot in a tough time.

A presentation that Charlotte was scheduled to give at the Carer's conference was delivered by her partners in the project, Erica Husain and Fiona Bromelow. Her name and her work were a big part of the day, I hear.

And this: the book that Charlotte and I have been writing was published. Sort of. An early version is available for sale. The final version will be available soon. Email for link. All proceeds go to the Helix.

So, this week Charlotte became a published author, delivered an important message at a conference, and had her dream of Charlotte's Helix come true.

November 18, 2013

Testifying at AMA meeting: It's all about the coffee

Thanks to my dear husband who navigated the early hour, the fog, and an uncooperative coffee dispenser I made it to National Harbor yesterday to testify in front of the AMA's Congress group deciding on a resolution on insurance coverage.

Many thanks also to Michael Linskey and Dr. David Fassler of AACAP for the invitation and introduction. Thank you for requesting a family member to testify (I think I was the only non-doctor in that room!) it was a tremendous honor to speak on behalf of millions of American parents.

Thanks also to Mark Moran for the interview!

I love talking about families and eating disorder recovery.

November 13, 2013

Becky Henry featured in new book out TODAY

Parent activists are a special group. We stand up for our kids and for parenting and I love celebrating fellow activists and advocates so much.

Today I celebrate Becky Henry. She is featured in a book out TODAY, and we need to spread the word. Congratulations, Becky, and may your example inspire and energize others!!


November 8, 2013

Mazel tov, Eating Disorders Coalition!

Hearty congratulations and GRATITUDE to the Eating Disorders Coalition for the big win today on parity legislation. Your work is so appreciated and important. THANK YOU for this.

  
The EDC has worked tirelessly, in the past two years to put pressure on the Administration to release the regulations for the Mental Health Parity and Addiction Equity Act of 2008 and to clarify that eating disorders must be covered at parity.

This morning the Department of Health and Human Services released their final regulations on the Mental Health Parity and Addiction Equity Act of 2008.  The EDC was part of a conversation this morning with HHS and the Substance Abuse Mental Health Services Administration where they outlined the final regulations. The EDC is excited about a number of the provisions.

While the final rule doesn't require that residential services be covered, it does require that if a managed care organization (MCO) or health insurers offers "post-acute care services," then they also must cover residential treatment and other intermediate services on the behavioral health side. Simply put, it means that if a health insurance plan covers chemotherapy [a post-acute oncology intervention after hospitalization], then it must cover residential treatment of substance use disorders or eating disorders. The rule ensures that parity applies to intermediate levels of care received in residential treatment or intensive outpatient settings.

Another, tremendous win for us, is that the final rule clarifies that parity applies to all plan standards, including geographic limits, family type limits, network adequacy.  As many of you have encountered, you've needed to travel out of state to treatment centers so this is tremendous.

The EDC is particularly encouraged by the network disclosure requirements, the final rule will require that MCO's/Insurers disclose medical necessity definitions and the process used to construct NQTL.  This has long been a difficulty faced by people denied coverage for their eating disorders.

This is a tremendous victory for all of those who have struggled through getting insurance coverage at parity. Thank you to those who shared your stories with us, called your Members to advocate for parity, and of course, attended our lobby days. This is our victory together!

I'm Walter White. Without the meth. And for a good cause.

I've been a full-time volunteer for ten years now. I'm not paid and I'm not getting rich or famous. People often don't like me and the messages I carry. I'm frequently misunderstood. Other advocates criticize. People complain that not enough is getting done or it is being done wrong. My family would just soon I not run around tearing my hair in frustration. What happened to the quiet writer in the laundry room?

I'm Walter White. I did it for me. I liked it."

Except it isn't cooking meth and it really is to help other people. But, advocacy isn't purely selfless or you can't keep it up. You have to want to help others, feel good about it, believe if you weren't doing it that you'd be missed. You also want others to join you because you think it will make them feel good too.

Like Walter, I don't do it alone: without my husband to do the paid work, my kids to spare me, and hundreds of volunteers out there working with me nothing happens. It doesn't work without finding and working with and being there for lots of other people: some quiet and some visible. Advocacy isn't a solitary activity and if you piss EVERYONE off or only promote yourself you aren't an advocate you're just an angry person in a corner alone. Actually, that really is Walter White.

Adversity 2 Advocacy is a terrific new organization that gets this. They celebrate the benefits of paying it forward. I'm proud to be an A2A supporter and just tickled to pieces to have been interviewed the other day by the founder, the marvelous and melifluous Jeff Bell, and given the chance to discuss advocacy and F.E.A.S.T. and Charlotte's Helix. My name and face and voice may be what you see, but I am just one person who represents the work, caring, sacrifice, and of many others. Join us!


November 6, 2013

Researchers at Columbia University offer free bulimia treatment

Hi Laura,

We love your website here at the Teen Bulimia Study at Columbia University. Way to go for making a difference and shining a light in this field. (thank you)

We're hoping that you might be interested in helping us with a post on our Teen Bulimia Study, http://www.teenbulimiastudy.org. The more insight we have into bulimia, the closer we get to answering questions about recovery and the disease. We currently only need 10 more teens with Bulimia to complete the study for insight on brain mapping and restoration in teen bulimics.

As background, this is a NIMH-funded study of adolescent girls with Bulimia Nervosa (BN), ages 12 to 17 years. The aim of the study is to further our understanding of the neurobiological factors that may lead to the development and persistence of BN. 

Compensation (up to $900) or treatment for BN in our eating disorders clinic (free of charge) will be provided for participation.
With only one child psychiatrist in our clinic, we have limited resources to provide treatment to all of our BN participants but are looking to recruit teens who might already be in treatment elsewhere. 

Thank you for taking the time to read this email!

Best,
Kate

P.S. here is a summary of the study:


Columbia Center for Eating Disorders Offers No Cost Treatment To Teens with Bulimia Nervosa!

Researchers at Columbia University Medical Center are interested in learning about the development of Bulimia Nervosa. We are looking for 10 more girls (12 to 17 years) who binge eat and purge to participate in the study. They can receive inpatient or outpatient treatment at no cost. Monetary compensation (up to $900) is also available. Please call the clinic (212-543-5739) and visit the study website for more details: http://teenbulimiastudy.org/

November 5, 2013

Participants needed for a study on how individuals with eating disorders talk about it: please help!

Hello Laura,

In the theme of "sample size is everything," maybe you can help me out.  Do you ever blog about current research opportunities for individuals with/in recovery from eating disorders? 

I'm a psychology student at the University of Saint Joseph, and am conducting a study which examines how individuals with eating disorders talk about their eating disorders. If I get enough responses to have significant results, this study could give insight that would further knowledge of evidence-based practice in treating eating disorders.  I'm looking for more participants.  Anyone who is at least 18 years old and has ever been in any type of treatment for an eating disorder (currently or in the past) is eligible to participate. The Institutional Review Board at the University of Saint Joseph has approved my research.

The study takes less than 30 minutes to complete, and participants may enter a drawing to win an Amazon gift card after completing the study. The study can be found at the following link:http://www.psychsurveys.org/cistulli/eatingdisordersandaffect
For more information, participants/potential participants may call Dr. Kristin Henkel Cistulli at 860-231-5437 or email her at kcistulli@usj.edu  
Would you be willing to post something on Laura's Soapbox about my study?
- Mary Duffy

Charlotte Bevan has a Magic Plate... Award

F.E.A.S.T. announced yesterday, along with a UK Task Force member on her doorstep with the prize in hand (and cake!), that Charlotte Bevan is the 2013 Magic Plate Award recipient. Well deserved and sent with love.

Congratulations, dear Charlotte, and thank you for all you do for all of us. You inspire, you fire us up, you keep us honest. Thank you!



October 31, 2013

The scariest neighborhood trick about treats

There's a lady in North Dakota who has appointed herself the health scold of her neighborhood and is handing letters instead of treats to children she deems too large for candy. Happy Halloween!

Here's the letter I suggest kids hand her:

Dear Neighbor Lady,

You are probably wondering why I am giving you this note instead of dancing around joyfully showing you my costume and shouting Trick or Treat like I am at everyone else's house. After all, the tradition of Trick or Treating has been around a while and is one of the last remaining shared neighborhood traditions. You've clearly been waiting with anticipation for this day.

You may feel left out or shamed by this letter, but it is for your own good. Your unhealthy attitude about my body and my parents is, in my opinion, more than moderately out of line.

Tomorrow I will be back for the following documents:

Your medical degree, giving you the right to diagnose other people's health
Your dietician's license, for prescribing "unhealthy eating habits"
Evidence of a beating heart

I'll pass on the candy, though. You might want to keep some sweetness for yourself!

Thank You,
A child

Wanking like a gibbon

I know, I'm naughty. But how often do I get to use a quote like "wanking like a gibbon" in a sentence?

For those of you who live on the internet as much as I do, enjoy this rebuke to the trolls:




The anonymity of the Internet is both wonderful and horrid, in turns. On balance: wonderful. But sometimes....

Oh, and if you are offended by this you may blame Charlotte. I would probably have edited out the saucy reference but she egged me on.

October 27, 2013

Sample Size is Everything: ADD THE UK to AN25K

Dr. Cynthia Bulik at UNC has written, with Stephanie Zerwas and Gerome Breen at Kings College London, the clearest and best explanation of why the eating disorder community can change medical history through supporting AN25K: SAMPLE SIZE.

Genetics Buzz: The reason that schizophrenia is out ahead of the pack is because of sample size. When it comes to genetic research, sample size is everything. 

Don't complain that the media has it wrong and the doctors don't understand and your brother-in-law says your daughter should "just eat" if you aren't going to DO something when you can. Join the worldwide effort to get enough samples to show Uncle Joe he's a dinosaur, allow doctors to get proper ED training, and let the media tell the REAL story: let's figure out the underlying genetics and mechanism of eating disorders.

ADD THE UK to AN25K: donate to Charlotte's Helix and get into the study in your country if available! (information on US and Australia studies on the site)

October 23, 2013

Third F.E.A.S.T. conference: register today!

I can't believe it is our third conference! Friends, registration is officially open. You asked for a more central location: F.E.A.S.T. listened. Dallas is a wonderful site with great airfares. The speaker's list is wonderful, and the content can't be beat. Best of all: meet other parents who truly get it and care about one another. Even if it is your first F.E.A.S.T. conference you will feel like it is a reunion. The community feeling is wonderful.

And, believe it or not, the price is not going up -- same as last year but with a really special couple's rate.

See you in Dallas!



It is always better to fight an enemy you can name

"It is always better to fight an enemy you can name." 

We need to name eating disorders. What are they? How much of the cause is inherited? How much is epigenetic? What role do diet, experience, and other environmental influences have?


Are eating disorders a spectrum disorder or many different disorders with different causes?

We need to know. We also need to make it happen: science isn't going to just appear because it "should." It takes people who care about it to make sure it is funded, lobbied for, of high quality, and the information gets to the clinicians and families affected.

Often, it takes personally motivated and dogged advocacy. 

Here is a beautiful example of a family's work to save their own child and other people's children through genomics. Doctors and families using cutting edge technology NOW to fight disease. 

Charlotte's Helix is another example of families taking it upon themselves to get involved to save children, including our grandchildren.


October 19, 2013

You will remember later that you were an early supporter of genomics

CharlottesHelixWhy am I so excited about DNA research?

Genomics will not teach us everything we need to know about illness. It will, however, tell us a lot we don't know yet. We are in the early stages of understanding how our genes interact with environment and with other genes but it's a fair guess that disorders with active advocates are going to the front of the line.

If eating disorder advocates don't act now we will be left behind. If we don't get things funded and we don't make sure our families get into studies we won't be included.

What will we tell families 5 years ago about why we didn't act NOW, while we can?

In Australia and in the US our families can act now, at no cost to ourselves because of the generosity and far-sightedness of the Klarman Foundation. We all owe an enormous debt of gratitude to them, and to Dr. Cynthia Bulik for her AN25K challenge.

We need numbers, my friends. If we want research to happen we have to MAKE it happen. Do families care? Let's show it. Donate to Charlotte's Helix today. Any amount matters: really. Put eating disorders in the front of the line.

October 17, 2013

Diet soda and weight gain

I hate that the title of this blog post will get me more hits than most of the very fascinating things I write about... but then again: hello, Internet, nice to see you!

I want my readers to check out a post by my friend, Lori, the author of Drop It and Eat, about diet soda and looking at research critically.

Diet Soda Causes Weight Gain?

October 16, 2013

Charlotte's Helix in the New Statesman

A thought-provoking piece in the New Statesman yesterday discussing the Charlotte's Helix initiative. I really mean that: it provokes thought. Most of what gets published about EDs is polemic: my view vs. their view. There's a lot of positioning and not as much THINKING going on. I didn't agree with everything said here but this is the kind of talking we need to be doing.

Those who die of anorexia... by the blogger, Glosswitch.

October 15, 2013

T-shirt for Helix lovers

http://www.tfund.com/CharlottesHelix
http://www.tfund.com/CharlottesHelix
Want to wear your support for Charlotte's Helix?

One of Charlotte's Helix's supporters has initiated a t-shirt fundraiser: WEAR IT!


October 14, 2013

What is the role of the pediatrician in Family-Based Treatment for Eating Disorders?


I'm beyond pleased to share this new article, available for free online for you to print out for YOUR pediatrician, not least because I had the opportunity to help out a bit with it...


For many of us the family doctor or pediatrician is the first port of call when we suspect something is wrong. This is where it can go wrong (ours thought our daughter needed "more salt") or very, very right. This article gives the information to pediatricians in a form and with the authority they need it.

If your child's pediatrician is giving you funny looks when you mention Family-Based Treatment: here's the cure.

If your child's pediatrician is backing away slowly in concern when you say you want to take over re-feeding at home: here's reassurance.

If your pediatrician thinks your family's therapist is selling snake oil: here's verification.

The article may be for pediatricians but I can guarantee it will be widely used by parents to help work WITH their pediatricians. Copy 1 goes to our family doctor.

October 12, 2013

"Desperately anxious"

Thank you to Dr. Bryan Lask, for a very interesting radio interview about anorexia nervosa on Radio 4 earlier this month. Listen to this and think about why as a society we persist in believing that people can simply choose to stop feeling and thinking their eating disorder symptoms, and more than "someone with pneumonia chooses to be short of breath."

(start at minute marker 19.28)


October 7, 2013

Huffington Post Live interview on childhood "obesity"

I have to put the title in quotes here, as it is terminology I neither use nor accept, but I was invited to be on a live panel for an interview on Huffington Post Live today: "How To Talk To Children About Obesity."

My answer to that question is "Don't."

Model and live a healthy and positive life with your kids. Eat wholesome family meals most of the time. Be active together. Prioritize sleep. Nurture healthy body image based on enjoying one's body and what it does, not its appearance or size. Do not comment on or put value on anyone's body size or shape.

There is no need to talk about size, large or small. It doesn't do anything good, and it can do a lot of harm. Weight stigma is poison: harming those of all sizes just as racism is toxic to the victim and the perpetrator.

And here is a few more "don'ts."

Don't look at the weight of children and think you know anything about their health, their eating habits, their parents, their self-control, or their lifestyle. You do not.

Don't, moms and dads, think that your doctor has training in this area: they probably do not.

If you suspect an eating disorder go to a specialist. Go to a specialist with recent and ongoing training and active membership in eating disorder specific organizations. Just because someone calls themselves an eating disorder expert doesn't make it so.

Don't, parents, if your child is average weight, believe that this means you deserve a gold star for parenting. Your child's weight is largely a function of genetics. Love them, feed them well and calmly, do things together, make sure they have safe and loved lives. Let weight take care of itself. There is nothing recommended for "obesity" that should not be happening for all children.

Don't comment online with your head in your behind: it is not a good look for you.

October 4, 2013

Support the Helix by wearing the button!

CharlottesHelixBloggers!

Charlotte's Helix needs your support. Please join the Helix by adding a helix button to your sidebar with the code below. Then email the helix to be added to the Helix blogroll: info@charlotteshelix.net

We're crowdsourcing research, my friends. With the support and kindness of her friends, Charlotte's Helix is working to change medical history.

Believe in it? Join it!

Insert this code in my sidebar as "html" into a widget on your blog.

Need help figuring out how to add it? Email me at Laura@charlotteshelix.net

And who do we have to thank for this button project? Cate, for creating the button after Carrie put out the call. Americans working with Australians to work with our original countrymen, the British!

 

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 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.

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.

August 29, 2013

Sloppy language

Yesterday I had one of those moments of clarity that, interestingly enough, came while reading about memory loss. My mind has been Swiss cheese lately so the topic of memory drew me in to this piece on differentiating age-related memory loss from Alzheimer's.


It struck me that this is exactly analogous to my issues with conflating disordered eating with Eating Disorders. By putting both DE and ED in the same basket and then just stringing it along a spectrum we lose sight of what I believe to be true: that we are looking at different things altogether.

Memory issues can be caused by age-related decline, brain damage, Alzheimer's, and other dementias. Understanding ANY of those issues means parsing them out. Treatments would not be expected to be the same, and part of the diagnostic process has to include parsing them.

Same with eating disorders. Although individual PEOPLE may present symptoms along a spectrum of disordered eating we should not assume that all of those people have eating disorders, nor would all people with eating disorders present with certain levels of disordered eating.

Figuring out which patients have age-related memory issues and Alzheimer's offers great hope for treating both - appropriately. We are going to need to do the same thing with eating disorders.

Language, and diagnosis, matter.

August 21, 2013

You don't write. You don't call....


Yes, I've been quiet.

It has been a challenging, life-changing, and educational summer. I chose not to live it online. A series of difficult distractions caused me to put aside my online life for the moment. I've put a lot of things aside recently.

My hiatus from social media and advocacy has been a strange absence in my life and educational in itself.

I haven't decided what the future holds, but I am working on some new projects offline that have me doing research into things I normally wouldn't find. This clipping is one of them.

Enjoy!



July 17, 2013

Consensus Guidelines project: please help?

posting a request forwarded through my friend, June Alexander:


Opportunity to share wisdom from first hand experience is always to be welcomed. I believe that carers and consumers (sufferers) are a largely untapped resource in building evidence-based research in the eating disorder field. Hence my excitement at this call which comes via my dear friend and fantastic researcher, Dr Hunna Watson in Western Australia. One of Hunna's students, Jacqueline Le Mesurier, seeks participants for her "Consensus Guidelines on Peer Support in Eating Disorders" research study.http://www.junealexander.com/2013/07/carers-needed-for-peer-support-research/

July 10, 2013

Research participation wanted!

Posted by request:

Hello,

I'm currently conducting Economics research at the University of Missouri - St. Louis under supervision of Dr. Lea-Rachel Kosnik. 

I'm writing you as my research is centered around the price-elasticity of demand of eating disorder treatment. What does that mean? Essentially, how much does cost impact the willingness of someone to go to treatment. This relationship has implications for both recovery and for insurance so I am interested in uncovering what that relationship is. Also, whether or not that relationship is different than those historically found for mental health care and health care, in general. 

I think it's incredibly important to connect with as many segments of the eating disorder population as possible. For instance I'm contacting you, because I want to make sure to attempt to include those that want to try less traditional (or expected) treatment (such as Maudsley). Additionally, those that are older, those that have eating disorders that are less common (as you know, BED just "officially" became an eating disorder), males, athletes, and even those identifying themselves as pro-ana.

I would love it if you would be willing to share my survey on your blog. I truly do believe the research is important, especially since no research like it exists - at present - for eating disorders. Eating disorder treatment is oftentimes quite expensive so it's important to derive what relationship the cost of it has with willingness. 

My survey can be found at https://www.surveymonkey.com/s/priceelasticity1 , but if you would like a PDF version of the questions (as found in the survey) beforehand I would be more than happy to email that to you as well as answer ANY questions.

This research has received IRB Exemption Approval (and I can provide proof of that if necessary).

Thank you so much,
Kristie Ferreira
Sociology and Business Major, Economics Minor
University of Missouri-St. Louis
kfbp7@umsl.edu

July 3, 2013

Charlotte's Web

Charlotte is for many of us like Cher and Liberace: her first name is enough. Everyone knows Charlotte. Everyone has a story: a time they rose from shrinking fear to do something brave, a moment they realized they could do something they thought unthinkable, a quote so clever they taped it to their wall. We all think she's ours, but I can't imagine anyone so very much her own.

Charlotte does everything her way, including telling the world really difficult news. There is no artifice to this woman as she participates in the world so fully and directly. At the same time, she is the least attention-seeking person I know.

I have never really believed in "denial." I am sure this is because I've not really tried it. I can report now being in genuine thrall to its charms. Denial feels like a perfectly respectable and practical refuge.

July 2, 2013

Why read memoirs?

Solid, correct information is essential to good healthcare and compliance. Good stories don't hurt, either. Hearing a family's story about facing similar challenges can be the difference between "knowing" and "believing."

My dear friend, June Alexander, is working on a project promoting the use of narratives in training nurses. Please help her with this worthy project!

Readers are invited to share their favourite quotes/excerpts from helpful memoirs - I am co-authoring a research paper on the usefulness of memoirs in educating mental health nurses. I am particularly interested in short passages, even one-liners, that the readers have found particularly helpful, and why this resonated and connected so strongly with them.  We want to show how narratives can help the reader understand aspects of the illness/recovery journey, the tipping point  and other phases. The ultimate aim of this work is to provide mental health students with a guided reading of memoirs,  so that they can be a) more understanding and b) more facilitative of change … helping them understand what an eating disorders like from 'the inside' rather than seeing it purely through clinical eyes. 
Reading memoirs, as well as engaging in guided discussions about them, may help future clinicians realise the importance of empathy and unconditional positive regard in establishing a collaborative relationship. This Paper will argue how learning through memoirs of illness and recovery benefits students. It will share some of the creative ways selected biographies can be used to help transform the perspective of health profession students. It is also part of a project to build an evidence base in the use of narratives for promoting insight, change and empowerment within nursing, sharing ideas to support the confidence and creativity of other educators in the use of narratives in various forms to teach essential nursing concepts. Email: june@junealexander.com