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Posts Tagged ‘Headache on the Hill’

Headache on the Hill

April 21st, 2012

Four weeks ago I was one of sixty some-odd Migraine and Headache patients, physicians, and advocates of many kinds to spend a day and a half in Washington DC, lobbying Congress for research funding and recognition of Headache disorders.It was the Alliance for Headache Disorders Advocacy (AHDA)’s fifth annual Headache on the Hill (HOH). I participated in the second HOH three years ago and it was really inspiring to see how the group has grown in the interim. At that time I was one of very few non-physicians and very few bloggers. This year there were any number of patients, bloggers, advocates of many kinds, representatives of Migraine.com and Health Central, and NuPathe. Here we all are in front of the Capitol (I’m the short one in the orange coat):

As we tried to spread the message about how incredibly prevalent, disabling and costly these conditions are, we heard a lot of stories. Given that almost 20% of Americans experience Migraine, we discovered any number of legislators and legislative staff who either had Migraine themselves or who could tell us about how disabled their aunt, cousin, friend or coworker is by the condition. There was also a large group of Cluster Headache patients who came down to advocate for headache research. I was moved and amazed by these people who experience what is considered to be the worst kind of pain a human being can experience. Many of them were in the midst of cluster attacks at the time. We found that the legislative staff we visited had never heard of Cluster Headache. The condition is considered rare, but it is as prevalent as Multiple Sclerosis. You’ve heard of that, right?

We’re looking to have Congressional hearings into the impact of Headache Disorders. We brought our 11,000+ signature petition (if you haven’t signed yet, do it now please! Headache Impact Petition) and visited legislative aides and legislators from over 30 states. I went to the New Jersey Senators and several Congressmen with my friend, Rutgers Sociology professor Joanna Kempner, who studies the societal impact of Headache. I was moved to tears several times thinking of my sisters and brothers with chronic Migraine who could not be there – it was an honor to be able to represent you. Joanna and I told our stories, and we were able to see what incredible progress the two of us (both chronic Migraine sufferers) had made in the three years since we last walked the Hill together. (Joanna carried the torch for New Jersey by herself for the past two years when I couldn’t be there).

Here’s some of the information we conveyed to our legislators:

Though it wasn’t on our leave-behinds, we also talked about the increased risk of suicide to all Headache Disorder sufferers. (I think sometimes our diseases don’t get taken as seriously because they are not considered to be fatal, but between increased cardio-vascular risk and suicide risk, I think they’re fatal enough.) In general we had sympathetic listeners in the Congressional aides we met with. Congressman Rush Holt (NJ 12th district) came in while we were meeting with his aide, and both of them gave us a very warm and interested hearing.

We’re following up, and results can take a while. In the meantime, please contact your legislators and let them know how you are impacted by Headache Disorders. We can make a difference.

- Megan Oltman


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Posted in Advocacy | Comments (2)

Spammedy, spam, spammedy spam…

April 1st, 2012

Hello friends – I’ve been gone a long time and I’m so glad that (real) people still come by and visit Free My Brain. The needs of working and earning a living have gotten in the way of my blogging for a long time. There’s good news in that, in that I have been well enough to work full time, but bad news too as we continue to struggle economically and the stress level of my life remains high. Not to mention that I miss the wonderful relationships and the fun back and forth of the on line world. Ever since getting back from Headache on the Hill this week, and remembering who I am as part of this Migraine advocacy community, I have been determined to get back to Migraine blogging and coaching, even if just a little at a time.

With help from my resident tech-guru husband and at the recommendation of dear blogger friend Diana Lee, I am installing Disqus for comments, in the hope that real people will once again be able to talk to me, rather than spam-bots. (I hope Danny can get to it this weekend. He just started a new contract position Thursday so has been working on that, which has to take priority since it pays the mortgage.) Some of you have tried to leave comments and somehow haven’t been able to; I’ve had quite a few emails from my “contact me” page alerting me to something wrong with the comment function. Spam-bots don’t seem to have any trouble with it, though. I’ve gotten thousands of spam comments over the past year and a half or so. They were piling up in my comment moderation box, and several hundred even managed to spill over to the “approved” side though I sure as hell never approved them! I don’t know how that works, but I spent hours deleting them all over the last few days.

And so, just so those hours of purging will not be completely wasted, I wish to share with you some of the choicest cuts of spamminess – worthy of a Monty Python breakfast (spam sausage spam spam bacon spam tomato and spam).

The thing about the spam comments is they just manage to sound almost human, but not quite. At first I thought they were all written by non-English speakers, but if you are human and speak any language at all you have some grasp of syntax, which is notably missing here.

First, the marvelous compliments:

“Treasured… I totally wonderful this item!” (And I totally wonderful your use of English!)

“Excellent site. It was pleasant to me.” (So nice of it; too bad you weren’t pleasant enough to leave it alone.)

“Splendid… I seriously great this post!…” (Wow, and you seriously grate on my nerves!)

“Eloquent… Smooth rhetoric in this item. I wondered if I was reading Richard Nixon.” (Well, hey now, is that any way to speak to someone who lived through Nixon’s rise and fall? Not that he wasn’t eloquent in his lies, but I’ve surely never modeled myself after him!)

“Simply wish to say your article is as astonishing. The clearness in your post is simply nice and i could assume you are an expert on this subject.” (Sounds almost human, though to be astonished by something simply nice would require some kind of weird mental gymnastics. Maybe this was a real human after all and I should take in that I am simple yet astonishingly nice. Except not right now.)

“Great beat! I wish to apprentice while you amend your website. The account helped me a acceptable deal. I had been tiny bit acquainted of this your broadcast provided bright clear concept” (Yeah… I got rhythm…)

And just for the sheer nonsense of it, “Log Cabins Loch Lomond” contributed “Thanks erst much for distribution this on line. I sure every bit of it.” (Well, by yon bonnie banks and by yon bonnie braes! You’re welcome erst much! I sure… every um… what you said.)

But rest assured, I am not universally loved by spam-bots, some criticize me thusly:

“I can impartially state that I didn’t get it… Check out this gibberish… Do others think they believe it?” (And I can impartially state that you are pretty darn good at gibberish yourself.)

“Grow taller for idiots review. Another post of fail… Why do you even bother ?” (Indeed. Why do I even bother, when I grow taller neither for idiots nor for geniuses? Five foot two and a half ever since I was fifteen. Ah me!)

And just in case you were wondering “how to quit smoking pot. {Simply|Just} {want to|wish to|desire to} say your article is as {astonishing|amazing|surprising|astounding}. The {clearness|clarity} in your post is {simply|just} {spectacular|nice|excellent|cool|great} and i {can|could} assume {you are|you’re} an … (Multiple choice spam? I’ll have the spam spam spam sausage and spam!)

But perhaps the creme de la creme:

“Fleece Blanket. Funny Thing Happened… While I was flipping through the post, a cat just swallowed my pet ferret!” (In fact, fleece blanket, that would be sad, if you were a human with a pet ferret. Luckily, it is highly unlikely.)

That’s all for now. Wishing you a spam and Migraine free tomorrow.

- Megan

Can of Spam image courtesy of AJC1.

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Posted in Advocacy, Communicating, Rant, Silliness, Weblogs | Comments (1)

Express Migraine to Congress

October 24th, 2009

Betsy Blondin, editor and creator of the spectacular book of art and writing by Migraineurs, Migraine Expressions, has created a new advocacy campaign. A friend suggested that people purchase a copy of Migraine Expressions for their U.S. Senator or Representative, to help raise awareness and understanding of our disease in Congress. Betsy loved the idea and launched the effort to “Express Migraine to Congress.” At least 7 books are on the way to Congress!

To participate, purchase a book for $18.95 here: Express Migraine to Congress, and let Betsy know on the PayPal form or via e-mail which Congress person to send it to. Betsy will keep track of the Congress members receiving books so we won’t duplicate efforts on Betsy’s blog here.  For each book purchased for Congress, Betsy will donate $1 to the Alliance for Headache Disorders Advocacy (AHDA) toward advocacy efforts.

If you can’t afford to buy a book, you can use the links on Betsy’s Senate and House of Representatives pages to send a message to your Congress members, asking them to help millions of Migraineurs by supporting Congressional hearings and increased funding for migraine research.

I’ll be going to the AHDA’s third Headache on the Hill day of advocacy in February, and these books sent to Congress beforehand will help raise awareness of what we are lobbying about. Momentum is building for Congressional action. Our lobbying efforts have resulted in legislative report language supporting increased attention by the NIH for migraine research. Cindy McCain coming forward as a Migraineur and pledging to advocate for Congressional hearings, has to increase our visibility.

Let’s support Betsy in this great idea to raise awareness!

- Megan Oltman

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Posted in Advocacy, Books | Comments (0)

Help Us Get Better Treatment

February 7th, 2009

Most of the time we do what we can to manage our own Migraines and support others, but don’t feel like we can have much of an impact on the disease itself or our treatment options. Coming up on February 24th is the Alliance for Headache Disorders Advocacy‘s (ADHA) Annual “Headache on the Hill” – a day of advocacy on Capitol Hill where we will be lobbying our Congressional representatives for a larger share of National Institutes of Health dollars for Migraine and Headache Disorders research. I’m very excited to tell you that I will be in Washington along with Teri Robert and a number of leading Migraine specialists and advocates to speak with my Congressman and Senators. Read some more about what Teri has to say about it here: We Need Your Help to Get Better Migraine Treatment.

So, here’s what happens in the meantime. The ADHA will need your help in writing to your representatives sometime soon, possibly before Headache on the Hill, to inform them about the issues and ask them to lend their support. Could you please go over to the ADHA site today and sign up for their mailing list?  This way you will know when it’s time to write your representatives. Why are Migraine and Headache Diseases so under-represented when it comes to our National Health dollars? Probably because we haven’t had the kind of organized advocacy that other diseases have had, but we can change that now!

I’ll let you know here when it’s time to write to your representatives, but please sign up with ADHA today so that you don’t have to rely on me! Thanks for your help!

- Megan


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Posted in Advocacy, Medicine | Comments (0)

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