Thursday, March 13, 2008

Migraine Treatments: Time to get off our behinds!

Here's a sad fact for you -- There are NO medications available that were developed for Migraine prevention. NONE. Everything we have in our arsenal was developed for other conditions. Then Migraineurs using them for those conditions noticed that they were having fewer Migraines. All the preventive medications we have are what Teri Robert calls "hand-me-down" drugs.

How about another sad fact? Two days ago, the Alliance for Headache Disorders Advocacy posted an alert to their web site asking Migraineurs and other headache disorder patients, their friends, family, coworkers, etc., to email their members of the House about increased NIH funding for Migraine and headache research. The set up they have makes it quick and simple to send that email. It takes less than five minutes. I just emailed Teri, and was shocked by how few people have responded to that alert.

I read several Migraine forums, and am always saddened by the number of people who are desperately searching for effective preventive treatment. Lives are being disrupted and destroyed by this disease.

So, here's my question for those of you who are in that position or care about someone who is -- IF YOU HAVEN'T GONE TO THE AHDA SITE AND SENT THAT EMAIL, WHY NOT?

This is something we can DO that can make things better for us. It only takes a few minutes. You don't have to look up your representative. That's done for us. Even the introduction and closing of the email are done for us. We don't have to leave our homes or even pay for a postage stamp.

Here's my take on this situation. If you don't take a few minutes to go to the AHDA site and email your representative, they you no longer have the right to complain about the lack of available treatments. We can't just sit back and count on other people doing this for us.

It's one email. It's five minutes out of our day. It's time to get off our behinds and DO something!

From a blog entry on MyMigraine Connection:
PLEASE, go to www.AllianceForHeadacheAdvocacy.org NOW. Click the "What YOU Can Do" link in the left column. You will go to our Alert Center. There is a box with our Featured Alert. Simply click the red "Take Action" button in the Featured Alert box. That will take you to a letter that's ready for you to add what you want to say about this issue, fill in your name and address, and have your email sent directly to your Representative. It is urgent that you do this NOW because the House is setting 2009 funding appropriations in just a few days.

Please go to MyMigraineConnection, read that blog entry, and take action!

To read the rest of that blog entry, please click here.

Namaste,
Abi

6 comments:

Christy said...

Abi, thanks for lighting a fire under me. I felt like my head hurt too much today to write to my representative, but your post prodded me into action.

Eileen said...

Abi,

I too was really upset after speaking with Teri and learning how few letters were sent. I was really ashamed of our migraine community for not doing more. Teri busts her butt every day for us, you'd think the people she busts it for could take a second and send a letter, that, by the way, she could not have made any easiser.

It really aggrivated me to learn that so few felt the need to help THEMSELVES! get better treatment.

I am devistated.

Abigail said...

{{{{{{Christy,}}}}}}

You're welcome. Thank YOU for writing that letter. It's so rare that we can do something concrete that can really get results that I hated for anyone to miss out.

Abi

Abigail said...

Eileen,

We seen to feel about the same on this. I wonder if Teri's readers have any idea how many hours she spends working to help all of us AND future generations. I can't remember a time when I emailed her and didn't get an almost instantaneous response. She's always working. Sometimes I worry that she almost never takes any time for herself.

Abi

Megan Oltman said...

And, Abi's readers, if you are beating yourself up about missing that opportunity, just go to the AHDA site, get on the newsletter list, and then you can write your senator soon, when you get the email. No doubt Abi and the rest of us will be reminding you then, too!

Megan Oltman said...

Abi - p.s. I just saw your follow-up post on a particular migraine forum about my post asking people to take action. I agree it was sad - and it surprised me, how little response there was. (And the testy reactions to your post, as well.)

I'm at fault for posting so last minute; I had a sudden "what else can I do?" thought on the last day and went around to some of the forums I don't visit that often in hopes of drumming up a few more signatures. I wish I'd done it sooner. But I think we're dealing with a deep kind of resignation here - more than just about migraine treatment, I think lots of people think they can't make a difference about anything. We should all put our heads together about how to affect that.

Cheers! Megan
www.meganoltmanfreemybrain.typepad.com