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Hi, Teri, I am a newly signed up sufferer (since the early 60's; can you imagine?). I read about Cindy M. in the New Yorker and I decided it was time for me to find out what I could do to help others deal with migraines and to push for a real preventative. That led me to you.
I am wondering what you and MyMC are about and what Cindy M. is thinking about doing--lobbying for assistance/money for research, raising private money for research, assisting you in your efforts on behalf of sufferers, etc.
Is MyMC a 501(c)(3) to which donations are made? I am not really into that part of it, but I realize that money is always an issue.
I just subsribed to the newsletter.
So, I am checking out what's out there, so I can decide how I can help others.
Do you recommend I sit back and read a few newsletters and get a feel for where everybody is? Does Cindy M. have a blog site or other clearing house? Is she working with you at this point? I will find the MyMC mission statement etc.
So, if you have time, would you please direct me a little?
Very short responses are fine.
Thanx. I appreciate your efforts. PM
Phillip,
-:¦:-•:*'""*:•.-:¦:-•*Welcome to MyMigraineConnection!*•-:¦:-•:*'""*:•.-:¦:-
Since the early 60's? I'm right there with you. I had my first Migraine at the age of six, so that would have been in 1960.
I'm glad you found us. There are things we can all do to help.
OK, let me break this down and give you what info I have at this time. Will try to take things in the order you asked...
What I'm about: When my Migraines put me in bed about five days a week with the Migraine from hell, I went from doctor to doctor, then got royally ticked off because nobody was helping me. So I started researching Migraines on my own, found a good Migraine specialist, got help, and the rest -- as they say -- is history. That's how I became a writer and a patient educator and advocate in the field of Migraines and other headache disorders. If you want to read more, you can click my name to read my bio or you can read an excerpt from my book that tells my story. Just go to Exerpt 2 - "Living Well with Migraine Disease and Headaches."
What MMC is about: MMC is part of the HealthCentral Network (THCN). THCN and MMC are about providing information and support to help people be active participants in their own health care and live better lives. We want to help both the people who have health conditions and the people who are their support systems.
What Cindy M. is thinking about doing: She told me she's planning to go door-to-door in Congress to make people understand and get us Congressional hearings that can really help address all the issues we need addressed. Remember th Congressional hearings about Parkinson's where Michael J. Fox testified? That kind of hearing. Beyond that, I'm not sure what specific steps she's going to be taking, but when I know, I'll be posting about it.
No, MMC isn't a nonprofit. THCN is a for-profit corporation -- one made up of very caring, and socially responsible people who always encourage me in my advocacy efforts and are quite supportive of my writing about advocacy issues here as well as the educational and support issues that are my primary job.
I'd suggest you check out the site of the Alliance for Headache Disorders Advocacy. For now, the big issue we've undertaken there is getting the NIH to increase the funing of Migraine and headache research. There's a "Stay up-to-date" link in the right column where you can register to receive an email when there are opportunities to email your Senators and member of the House to get their support on AHDA issues. There's alkso a link on the left to things we can each do. You asked about donations. There's a donation button on that site, BUT since the activities of the organization are considered to be lobbying, donations are not tax-deductable.
We're at the very beginning with Mrs. McCain, and I think it's going to be an exciting journey. Whether I end up working with her directly or not, I will be kept updated on her activities and, in turn, will keep everyone here updated.
It's really great to "meet" you, Phillip,
Teri
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Teri,
I was so glad to see someone who is in the public eye so often to really come out and help us. I even sent the email of her speech to my attorney. I'm so glad more people will know that this is a disease, and not something we make up in our heads. LOL.