Tag Archives: volunteering

Eating Disorders Coalition Spring Lobby Day 2012!

Do you know what the FREED Act is? It’s the Federal Response to the Elimination of Eating Disorders, and it’s a bill that we need YOUR help to pass.

For over a decade, the Eating Disorders Coalition (EDC) has been active on Capitol Hill working with the federal government to help make eating disorders a federal health priority. With the highest mortality rate of any mental health disorder, we need a bill like the FREED Act to help those who suffer from eating disorders get the help they need and deserve.

I’ve been volunteering with the EDC for 5 years now, and am currently a Junior Board member. Sometimes people ask me if I really think lobbying is worth it because of how complicated and partisan politics can be. I’ll admit, it can be discouraging. But those in office really do pay attention and listen to people who take time out of their lives to come and discuss issues with them. There’s so much misinformation out there about eating disorders that we need people who have had real-world experience with them to come and educate lawmakers. Putting a face and a name to a real story goes a lot farther than any statistics, no matter how shocking or upsetting they might be.

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NEDA 2012 Winter Lobby Day – Richmond, VA 1/18/12

Did you know that, at present, there are no procedures implemented on the state or federal level to screen for eating disorders among adolescents?

The most recent data provided by the National Eating Disorders Association (NEDA) shows that in American high schools, 30% of girls and 16% of boys suffer from disordered eating, which includes bingeing, vomiting, fasting, abuse of laxatives and diet pills, and compulsive exercise.

It gets worse.

Females between the ages of 15-24 suffering from anorexia have a mortality rate twelve times higher than that of their peers, a statistic that translates into anorexia having the highest mortality rate of any mental illness. Unfortunately, even though eating disorders are preventable and effective treatment exists, they are on the rise.

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Virginia Lobby Day with the National Eating Disorders Association

Just a quick post to let everyone know that the National Eating Disorders Association will be hosting it’s second state-level Lobby Day with the VA General Assembly on Wednesday, January 18. If you’re a Virginia resident, please consider attending.

Last year, we met with members of the General Assembly and were instrumental in educating them about the importance of a bill being introduced by Senator Puller to study eating disorder prevalence in VA. As a result of the advocacy and lobby work, the bill passed unanimously! You can read the follow-up with a link to the study results here.

Myself (2nd to left) with other advocates and Senator Puller in 2011.

There’s still work to do, though. Even if you can’t attend, you can write or call your state representatives and ask them to support NEDA’s work. We know for a fact that phone calls and emails were also influential in some representatives considering this cause. You can find the full press release here complete with contact info to RSVP. It’s free, it’s easy, and it’s an opportunity to make a difference for everyone effected by eating disorders in Virginia.

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Another Successful Lobby Day!

I’m back from DC and wanted to do a quick post about it, though I’ll try to write more on it later. Working with the Eating Disorders Coalition has consistently been one of the most rewarding things I’ve ever done, and yesterday was no exception. I think we had some of the best weather in probably two years – we’ve lobbied in intense rain storms and in blistering heat! Yesterday, though, was perfect:

Clear skies over DC.

Fellow lobbyists crossing Capitol Hill to the House of Representatives.

Lobbying can be tiring, exhausting work, but it’s worth it! We dropped in to see Congressman Jim Moran to thank him for his support – he’s already signed on as a co-sponsor of the FREED Act:

Jim Moran takes time out of his busy schedule for a photo with EDC volunteers!

We always have a fair number of first-time lobbyists, and the combined sense of nervousness and excitement is pretty consistent. The idea of going into meetings with strangers to talk about your experience with eating disorders can be very daunting. It’s such a powerful thing, though, to be there with so many other people who understand the issue and are speaking up about it that I think it breeds a sense of confidence that many on arrival weren’t expecting to find in themselves.

That’s because when we all come together and share in our triumph and tragedy, it gets to the heart of the matter. Eating disorders are serious illnesses that make families go bankrupt, ruin lives, and sometimes take lives. We need to take all that raw emotion, hope, and pain contained in each of our stories to the people who are in a place of power to make a real difference – elected officials. Eventually, they’ll have a chance to vote on the FREED Act, and it’s up to us to inform them why it’s so important that they pass the Federal Response to Eliminate Eating Disorders.

If you’re reading this and have a story, then I want YOU to join us for future lobby events! Even if you can’t make the trip to DC, there plenty of other ways to get involved. You can support the EDC by donating, or participating in the letter writing campaign.

Alright, one last picture! Two people who really inspire me, Kitty Westin and my dear friend, Kathleen MacDonald:

Kitty Westin, myself, and Kathleen MacDonald at the EDC reception, 10/3/11 (photo credit Jim Knapp)

Do you want to help improve treatment options, research initiatives, education, and preventative action for eating disorders? Then come lobby with us!

Like this post? Stay up to date by ‘Liking’ my blog on Facebook, following me on Twitter, subscribe via email, or just leave me a comment to let me know what you think!

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We Still Have a Lot of Work To Do

WordPress does this really cool thing where it shows you how people stumbled upon your blog, which is admittedly kind of fun. It shows how many hits came from whatever website (from Facebook to Twitter to other blogs) as well as what search engine terms might have brought someone here.

Recently, a search engine phrase brought someone to my tiny corner of the internet that left me quite surprised and alarmed. The search was “are eating disorders real.” What this says to me, friends, is that we still have a lot of work to do.

If there is someone out there who is so unexposed to the reality of these life-threatening illnesses that they would question whether or not they even exist, then that tells me we need to do more to make that reality known.

The surest and quickest way to do that in my eyes is working with the Eating Disorders Coalition to help pass the FREED Act (The Federal Response to the Elimination of Eating Disorders), which I mentioned in a previous post. Out of any other health conditions, no one is asking questions like:

Is diabetes real?

Is schizophrenia real?

Is autism real?

Is alcoholism real?

Of course they aren’t. Though plenty of people may lack a deep or legitimate understanding of a given health condition, there are few which plague so many people in our society where someone wouldn’t readily be able to say “Sure, that’s a real thing.”

So why the FREED Act? FREED will help ensure the federal recognition of eating disorders as the public healthy priority that they need to be. In 2005:

Roughly 10 million people suffered from eating disorders, and about $12 million was spent on eating disorder research.

In that same year, 4.5 million people (less than half than those effected by ED) suffered from Alzheimer’s, and about $647 million was spent on Alzheimer’s research. (Source)

I’m not usually one to throw out a ton of statistics, but those numbers are appalling. FREED seeks to close that disparity and finally spend more than $1.25 per person for research. Until we have better numbers through comprehensive research to reflect how widespread and severe eating disorders are, we will have a harder time getting people (and insurance companies) to take them seriously.

So, what can you, or anyone, do about this? Come to Capitol Hill and lobby with the EDC. I started going in 2007, and I’ve gone twice a year ever since. It’s easily one of the most rewarding things I’ve ever done, and it’s an opportunity to make a difference for literally millions of people. The next Lobby Day is October 4th, 2011. If you’ve been effected by an eating disorder in some way,whether personally or someone you care about, then you’re already fully qualified to participate!

We can achieve the goal of eliminating eating disorders. But we need more voices to come and witness to Congress that this is the right and necessary thing to do. I’ll be writing more about my personal experiences lobbying soon. In the meantime, I hope you’ll consider coming to Washington, DC to help FREED become a reality.


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Achieving the Goal of Eliminating Eating Disorders – Part 1

You may read the title of my blog – ‘Until Eating Disorders Are No More’ – and think it idealistic. Indeed, the thought of getting rid of eating disorders seems daunting. A rampant mental health epidemic who’s numbers are going up, not down, a multi-billion dollar business model which seems intent on making everyone insecure about their bodies and themselves, and a culture which dismisses life-threatening mental illness because dieting has become normalized (to name just a few contributing factors).

Well, I do not think my title is idealistic at all. I believe that we are fully capable of eliminating eating disorders, and I believe that I will see this happen within my lifetime. However, this will only happen if we are dedicated and are willing to speak up about them.

The good news is, there are already more than a few organizations devoted to helping people do that very thing. To determine the best course of action, we must look at some of the reasons that eating disorders have become such an epidemic…

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