Saturday, February 07, 2009

The AHDA and Migraine Research - We CAN Help!

Hello! I know I've been remiss about posting, but family and personal matters have had me busy, busy, busy.

Anyway, this is to important to miss...

One of the biggest hurdles we face regarding Migraine treatment is the lack of solid research into the cause of Migraines and just what happens when we have a Migraine. Although there's been good progress, it's nowhere near that of some other diseases or what we need. That kind of research needs to be conducted so the researchers who are trying to develop Migraine and headache treatments have the essential knowledge to do their work.

The Alliance for Headache Disorders Advocacy (AHDA) was formed from this need and a 2007 event called Headache on the Hill (HOH). During that event, doctors, researchers, and patient advocates went to Washington to speak to members of Congress about this lack of NIH funding.

After HOH, the AHDA was formed, and at the appropriate times, they called on patients, family members, friends, anyone who cared to go to their web site and send emails to their members of Congress. They worked hard to make it so easy for us that it only took a matter of minutes to send those emails. The basic emails were already written, all we had to do was add any personal plea we wanted to make, and click a button.

Headache on the Hill is coming up again the end of this month. Migraine patient advocate Teri Robert tells us that yes, the AHDA will need our help again. They will need us to send emails, but as with most things political, there's just no way to tell exactly when that will be. It's possible that the AHDA will have very little warning of when we need to write to impact funding.

For that reason, it's very important that we be registered for the AHDA mailing list. When the need arises for us to send emails, being on their mailing list means that we'll get emails when we need to email Congress. Those emails will tell us what the issues are and have links to take us directly to a web page to send our emails.

Please, if you're not already on their mailing list, CLICK HERE to go to the AHDA site and register. The doctors, researchers, and patient advocates who participate in HOH for us take days away from their busy practices and work schedules to do this for all of use. We all need to back them up by sending emails when it's time.

So, pretty please? Go to their site and register, AND please ask everyone you know to do so too.

Namaste,
Abi

3 comments:

Andy said...

Thanks for the post. We have to be proactive. If we don't take action ourselves, then no one else will.

Pen said...

HI there, I am a fellow miggie from England. I blog too, we all need to link together this illness is so horrible.
Great Blog.
pen

Jon said...

Abi,

Have you any idea what might be going on with the AHDA? Thought you might since you blog about them. Their site isn't always updated, but my concern lies more with MAGNUM and Michael John Coleman's association with them. After emailing Coleman 7 times with a question about what happened to migraineblog, I've given up. The MAGNUM main page still has an obnoxiously huge picture on it for headache on the hill 2009. I also noticed that their honcode status is strange when I click on the link on their main page and the honcode toolbar is greyed out when I vitit the MAGNUM site. Doesn't that mean they don't meet the honcode?

If you have any info, I'd be interested.

Regards,
Jon