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Migraine and Headache Awareness Go Purple!

Migraine-AwarenessDuring the time I've been working as a patient educator and advocate in the area of Migraine and other headache disorders, one thing we've all been asking for is an awareness color. Breast cancer has pink; HIV/AIDS has red; and so on. But we've never had an "official color."

UNTIL NOW!

One of the problems is that there are several nonprofit organizations for Migraine and headache, some of them on pretty equal footing, so nobody could really make the decision. So, since I work with all of those organizations, I talked with representatives from them, and the good news is that we now have an "official" color. Looking at this post makes it pretty obvious that the color is purple. There were two primary reasons for going with purple:

  • In 2004, a group of Migraineurs did an awareness project selling purple silicone wristbands and donated the profits to MAGNUM.
  • Catherine Charrett-Dykes has been working on an awareness campaign on Facebook for CHRONIC Migraine, using a purple ribbon with a red stripe. 

AmethystCrystalCluster150Another reason I like purple for Migraine and headache is that in crystal healing, amethyst is the healing stone for Migraine and headache. 

Since the color has just been "made official," we don't yet have pins, bracelets, and the like available, but I'm sure they will be soon. Such items will make great fundraising projects to raise research $$ for Migraine, cluster headaches, and other headache disorders.

In the meantime, here are some places you can get information and start joining in to raise awareness:

  • Awareness web site: www.FightingHeadacheDisorders.com. This site is one to bookmark since it will be kept updated with links to purple items, awareness projects, and more information as it becomes available.
  • Add a purple ribbon to your profile picture on Facebook. This will work whether you've changed to the new timeline feature or not. To do this, go to PicBadges.
  • Also on Facebook, visit and like the Fighting Headache Disorders Facebook page.

Many thanks to the organizations who have endorsed purple as our awareness color. They are (in alphabetical order):

Also, many thanks to Ellen Schnakenberger, who helped get FightingHeadacheDisorders.com up and running and is helping with the Facebook page as well.

Now that we have our color, I hope you'll join me in wearing it often and using it wherever and whenever possible to show awareness and support. If you use it on your blog or web site, or have suggestions, please let me know!

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.


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© Teri Robert, 2012
Last updated March 22, 2012.


Migraine Congressional Hearing - Answers to Your Questions

WhySign

For a while now, I've been asking you to sign the Alliance for Headache Disorders Advocacy's petition urging Congress to hold hearings on the impact of Migraine and other headache disorders.

The response has been... well, underwhelming at best. It occurs to me that perhaps I haven't done a very good job of explaining what a Congressional hearing could do for everyone with Migraine or another headache disorder and some other issues about the petition.

So, today, that's what I want to do - Explain some things about the petition, what it could accomplish, and why it's urgent that we get as many signatures on it as possible. To do that, I've reviewed some of the questions about the hearing and the petition and created a FAQ of sorts:

Question: "But Snopes.com and others say online petitions are bogus!"

Answer: Actually, Snopes doesn't say that. In reality, some online petitions are worthless, and some are scams.

This particular petition is legitimate and legal. In addition, it doesn't stop online. Advocates for the AHDA will be hand delivering it to members of Congress during our Headache on the Hill event on March 27, 2012.

Question: Why should we want Congress to hold a hearing about the impact of Migraine disease and other headache disorders?

Answer: Whether we look at the general public or at members of Congress specifically, Migraine and other headache disorders are still terribly misunderstood and surrounded by myths and stigma. At a hearing, patients, advocates, and health care professionals would have the opportunity to testify before a Congressional committee. These "witnesses" would share factual data such as statistics and share comments and stories that have been shared through the current AHDA petition. But more than that, some of these witnesses would be patients who would testify about what Migraine and other headache disorders have done to their lives and the lives of their families.

Question: What would a better understanding in Congress accomplish?

Answer: Short-term, a better understanding in Congress must be accomplished before we'll see any significant increase in federal funding for Migraine and headache research funding.

We depend on pharmaceutical companies to develop new medications. The problem with that when it comes to Migraine and headache medications is the difficulty with developing medications for diseases and conditions when scientists don't yet understand them well. Pharmaceutical companies develop medications. They don't do the kind of basic disease research that's yet to be done into the cause and pathophysiology of Migraine and other headache disorders.

Longer-term, increased research funding can lead to better treatments. At this time, there are no treatments on the market that were originally developed for the prevention of Migraine and headache. This must change.

Also, we would hope that a better understanding in Congress would help lead to a better understanding among federal agencies and the general public, including employers.

Question/Comment: "I'm busy and don't have time for this."

Answer: Everyone has time for this. It's a simple matter of following the link then entering your name, address, and email address. It can be done in one minute, literally.

Question: What's done with my personal information I enter when I sign the petition?

Answer: It goes into a database on a secure server. Only two officers of the AHDA have access to that information. Each Congressional office will receive a list of only the people in their districts who signed the petition. For Senators, of course, that will mean the whole state. For members of the house, that will mean only their own Congressional district.

We NEVER share or sell our data or our mailing list, not even with the organizations that are members of the AHDA. We may email you in the future when there's action to be taken, but that is the only email you will receive as a result of signing the petition. We take your privacy very seriously, as seriously as we take our own.

Question/Comment: But the country is already in a financial mess!

Answer: We realize that. At this point, we're asking for a Congressional hearing. Do we also want an increase in research funding? Certainly, we do, and we absolutely understand. But please hear me on this. At this point in time, when it comes to federal funding for medical research, there is no correlation between the amount of funding and disease burden. By disease burden, I don't just mean the number of people who have a disease or condition. I mean the total burden of it -- how many people it affects, how severely it impacts people, the economic cost of the disease, the social cost of the disease, and more.  In previous years, when we've gone to Congress asking for increased research funding, we've also talked to them about there needing to be a better correlation between funding and disease burden so that the federal funding for research is allocated in a manner that is most beneficial.

Question: Who can and should sign the petition. Do you have to have Migraines or headaches? Do you have to live in the U.S.?

Answer: We'd love to see as many signatures of U.S. citizens over the age of 18 as possible. No, you don't have to have Migraines or headaches. Yes, you do need to be a U.S. citizen. If you're not a U.S. citizen, you can still help by sharing the link with your family and friends in the U.S. and asking them to sign the petition.

I hope this post answers any questions you may have about this petition. This issue and petition are vitally important to so many people.

If you haven't signed the petition, please take just a minute to sign it now...

Sign the Petition.

If you've already signed it, please share the link with your family and friends and ask them to sign it. If you have a Facebook page, please share the petition or his blog post on your Facebook page. Tweet about it, please?

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated March 14, 2012.


Medications Approved by the FDA for Migraine

PreventivesFDAApp166

Many of the questions about Migraines and Migraine disease revolve around the medications used to treat Migraine. Given the number of medications that are being used to treat Migraine today, the number of medication questions seems to keep growing.

One question I received Friday was from a gentleman who was looking for a listing of all the medications use for Migraine that are actually FDA approved for Migraine. It was what Oprah would call an "Aha! moment." With all the writing I've done about Migraines, I've listed those medications within other articles, but haven't written an article specifically on the topic.

I've remedied that omission. Here's that article: Medications Approved by the FDA for Treating Migraine.

Live well,


 

Puz-only-btn

Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated March 12, 2012.


My Little Migraine Friends

While answering some questions about Migraines today, I was thinking about what gives me comfort when I have a Migraine. My thoughts went to the comfort measures we usually talk about:

  • ice bags,
  • hot tea,
  • peppermint oil or candles
  • my favorite soft blanket,
  • my Sobakawa pillow,
  • and so on.

It's also comforting that, after 26 years of marriage, my husband knows the best thing to do is almost leave me alone, which means not really talking to me or anything, but occasionally checking on me. That's for both of us really. It lets him reassure himself that I'm really OK, and it lets me let him know if I need anything.

The biggest comfort though, often comes from my two little Migraine friends, our cats. If I lie down in our bed, Ali is usually quick to lie down with me. If I go to my recliner, Peaches quickly joins me. Peaches seems to know when I don't feel very well even if I don't lie down. She'll often spend part of the day on my lap as I sit at my desk or on the secretary's chair next to my desk, which is where she is now.

Do you have pets? If so, I hope they bring you as much comfort as Ali and Peaches bring me!

Ali

Ali

 

Peaches

Peaches

Live well,


 

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Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.

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© Teri Robert, 2012
Last updated March 8, 2012.


Migraine Research - Thanks for YOUR Donation!

Bodd-iPad-Sleeve

I can't let the opportunity pass me by to thank some of my readers for your donation to Migraine research, so...

Thank you!

If you've ever visited my Migraine and Headache Awarness Gift Shop on Cafe Press, you may have notices this statement:

ALL proceeds from the sale of these items will be donated to nonprofit organizations for Migraine and headache research.

Last week, I received a check for $56 from Cafe Press for the sale of items from my shop. When I received the check, I made a donation to The Migraine Research Foundation.

That's why I want to thank those of you who have purchased items from my Cafe Press shop for your donation to Migraine research. The items in the shop are marked up very little, but all proceeds will continue to be donated to Migraine research.

Live well,


 

Puz-only-btn
Get the latest Migraine and headache news, informational articles, tips for living well, and more in my free weekly newsletter. To subscribe, CLICK HERE.


Follow me on    or 

 

Page copy protected against web site content infringement by Copyscape

© Teri Robert, 2012
Last updated March 6, 2012.