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Posts Tagged ‘Alliance for Headache Disorders Advocacy’

One of my readers, renaissanceguy, made a couple of comments yesterday. In one of them, he made an excellent point. He said,

This blog is amazing, and I applaud you for exposing lies and presenting truth. While I agree with you, I want to urge caution.

You don’t want to give people the impression that no relief is possible. I think that with your heavy emphasis on there not being a cure, at least not yet, you might make people think that they are doomed to find no relief at all.

He’s right. I don’t want to make people think we’re “doomed.” We’re not. In writing this blog, I often write about people claiming they have a “cure” for Migraines. Some of the reasons I write these “cure-busting” posts are:

  • Some of these people are making big bucks from selling us information that we can find other places online, FREE.
  • Some of them are making money from selling us products, “medical” services, or theories that have not been proven. Some of these even claim to be the “cure” for multiple diseases.
  • We all need to know the truth, that Migraine is a disease that can’t be cured yet. There ARE good treatments that can help us live better, easier lives, but we need to know the truth and be realistic.

Let me say this for the record. We are not doomed to live hopeless lives because of Migraines. There are excellent treatments that can both stop Migraines once they start and prevent Migraines. Migraine preventive medications can help make our Migraines less severe, shorter, and less often. The disease cannot be cured, but it can be managed.

Taking renaissanceguy’s comment to heart, I’m going to start doing a different type of post on a regular basis, one that highlights some of the truths I’ve come across recently. After all, we do need to see the positive too, don’t we?

Here are some truths I’ve seen recently:

There have been a couple of blog entries recently that were about the difficulty of living with Migraines, how they can drive people to the point of suicide, and how to deal with these feelings. This is a tough, but important, topic, so I want to give you links to those too:

In closing, I want to thank renaissanceguy again and all the bloggers out there who are sharing the truth.

Have a good weekend!

Best,
Arabella

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Today I’m going to take a break from exposing the bad side of Migraine information on the internet to discuss a truth. More Migraine research is sorely needed. Anyone reading this probably already knows that. Another truth is that a major factor holding back Migraine research is funding for that research.

The Alliance for Headache Disorders Advocacy (AHDA) has been working to get the amount of funding from the National Institutes of Health (NIH) increased. They have some sobering statistics about Migraine and research funding:

  • Headache disorders cause more than 1 percent of all disability and 9 percent of all lost labor in the US every year.
  • Migraine alone is the 12th most disabling disorder in the US.
  • Headache disorders are the most prevalent neurological disorders, affecting more than 90% of all Americans.
  • The US annual direct and indirect economic costs of headache disorders exceed $31 billion.
  • The NIH expended less than $10 million in 2006 towards all research on headache disorders, comprising less than 0.05 percent of its total budget. (Yes, that’s less than ½ of 1%.)

In their latest update, the AHDA reports progress in the form of appropriations bill report language and a planning meeting with the NIH. I congratulate them on that progress, but the increased research dollars aren’t a reality yet.

Yesterday, I can across an article by Teri Robert about the Migraine Research Foundation (MRF). A bit about the MRF:

The Migraine Research Foundation is committed to furthering the understanding of the causes and mechanisms of migraine, helping to develop improvements in treatment, and finding the cure. We believe that migraine research is very important and under-funded. As a result, MRF is actively seeking to provide seed money grants for projects that are important, achievable, and innovative that will ultimately lead to better treatment and quality of life for migraine sufferers.

The MRF is now accepting research proposals for their next round of grants. There’s more information about that in Migraine Research Foundation Announces New Request for Proposals.

The AHDA has worked tirelessly to increase the amount of research funding Migraine gets from the NIH. Their news of appropriations bill report language and the planning meeting with the NIH is indeed good news and very welcome. I don’t want to be negative, but given the state of the U.S. economy, I have to wonder how long it will be before that progress turns into real dollars available for Migraine research. I’m not an expert on this, but I suspect the length of time we wait for those dollars will be tied to the length of time it takes our economy to recover.

In the meantime, I’m glad to see other organizations stepping in to raise research funds. Along with the Migraine Research Foundation, there’s a new foundation started by the American Headache Society, the American Migraine Foundation.  Instead of waiting for the government to fund more research, maybe we need to put more emphasis on the MRF and AMF. Maybe, when we have a few dollars to spare, we need to donate to these foundations. It’s something to think about.

Best,
Arabella

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It's about timeIt’s about time we had better Migraine treatments. Right? Right!

Most of the time, I post about Migraine sites and blogs that are disappointing, questionable, or wrong.  Today, I want to post about SOMETHING that’s wrong while posting about some sites and people who are great!

One of the reasons we don’t have better treatments is that the burden of research is left on the shoulders of the pharmaceutical companies. The National Institutes of Health (NIH) who should be funding the kind of research that reveals more about the causes of Migraine disease and how Migraines actually work in our brains, funds very, very little research for Migraine diseae or other headache disorders.

ahdalogo1601According to the Alliance for Headache Disorders Advocacy (the AHDA), the NIH expended less than $10 millong in 2006 towards all research on headache disorders, comprising less than one-half of one percent of their budget. The AHDA grew out of a 2007 event called Headache on the Hill. During Headache on the Hill, a group of doctors, researchers, and patient advocates traveled to Washington, DC, to speak to their congress members about NIH funding for Migraine and headache research.

Their work didn’t stop there. The AHDA kept at it, calling on everyone to send emails to their congressmen to get their backing. They also made it really easy! The emails were pre-written, and it only took a few minutes to go to their site and send them.

capitoldome150Later this month, Headache on the Hill will be going on again. As these dedicated people are preparing to brave this cold winter and travel to DC again, they’re also anticipating that they may need to enlist our help soon to send emails to congress again.

Soooooooooo, to get read for that, we all need to be sure we’re signed up to get their email alerts when our help is needed.

Let’s put our fingers where our mouths so often are and register for the AHDA mailing list. To do so, simply CLICK HERE.

Please, register for their mailing list AND ask all of your family and friends to do the same.

To keep up with all the AHDA is doing, as well as other important issues, keep an eye on MyMigraineConnection.com, where author and patient advocate Teri Robert always keeps us up-to-date.

Best,
Arabella♥

Images courtesy of Teri Robert and the Alliance for Headache Disorders Advocacy

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