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Posts Tagged ‘migraine advocacy’

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

Tags: AHDA, Congress, Headache on the Hill, migraine advocacy
Posted in Advocacy, Books | Comments (0)

Cindy McCain - A High Profile Migraine Advocate

September 16th, 2009

You may know that Cindy McCain came out of the closet as a Migraineur in the past few weeks, revealing her long struggle with the disease, and very controversially likening her suffering to that of a prisoner of war.  Whatever you may make of that statement, there is no doubt that this will bring a lot of attention to Migraine disease.  A high profile advocate may be just what we need to finally get some recognition for the huge impact of this disease. Cindy McCain gave the keynote address at the International Headache Congress in Philadelphia last week, and Teri Robert got an exclusive interview with her.  You can read Teri’s inspiring article here: Interview with Cindy McCain.

- Megan

Tags: migraine advocacy, Migraine and Headache awareness
Posted in Advocacy, Current Affairs | Comments (1)

MAGNUM - 15 years of Fighting for Migraineurs Rights

April 22nd, 2009

Coming up this Sunday, April 26th, at 4 pm Eastern time, I will be hosting the second of our monthly Managing Life with Migraine Teleconferences with Michael John Coleman, Co-Founder, President, and Executive Director of MAGNUM, the National Migraine Association.  The association was founded in 1994, and has been instrumental in many pieces of legislation that have made a difference to the lives of Migraineurs.  In their own words:

MAGNUM: Migraine Awareness Group: A National Understanding for Migraineurs, was created to bring public awareness utilizing the electronic, print and artistic mediums, to the fact that Migraine is a true biologic neurological disease, to assist Migraine sufferers, their families, and coworkers, and to help improve the quality of life of Migraine sufferers worldwide.

Michael John Coleman is one of MAGNUM’s Co-Founders, an award-winning photographer (though we can’t show you photos on the teleconference), and has been involved in many significant battles for Migraineurs in the past 15 years.  We’d love to have you join us on the teleconference.  The call is free but you must register to be on the call.  Go to Managing Life with Migraine Teleconferences to register.  If you already registered for last month’s teleconference there’s no need to register again.

- Megan Oltman

Tags: MAGNUM, managing life with migraine, migraine advocacy
Posted in Advocacy, Managing | Comments (4)

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

Tags: action alerts, Alliance for Headache Disorders Advocacy, Headache on the Hill, migraine advocacy, Migraine disease, Teri Robert
Posted in Advocacy, Medicine | Comments (0)