Last week was a week dominated by Migraine and headache as Nancy and I went to Los Angeles to attend the 54th annual scientific meeting of the American Headache Society. Nancy shared some of the highlights of what we learned in her post, Migraine and Headache News from The AHS 54th Annual Scientific Meeting.
In addition to all the excellent platform presentations, research papers, and research posters that present us with so many opportunities to learn side-by-side with Migraine and headache specialists, there were opportunities to work with ACHE, the American Headache Society Committee for Headache Education (www.ACHEnet.org). ACHE is charged with patient education, and I've been working with them for a few years now. Last year, the ACHE site was renamed the Fred Sheftell, MD Education Center in honor of Dr. Fred Sheftell, who was a huge supporter of patient education. Over the last year, ACHE has stepped up their efforts to provide patient education materials and now release a new patient education piece each Tuesday for ACHE Tuesday.
I also have some very exciting news to share with you...
For quite some time, many patients have been expressing to me a desire to have a true patient-operated headache and Migraine organization. You've told me that you want an organization that's for patients, their families, and their care partners and run by them as well. I haven't been ignoring you, but was having problems figuring out how to make it happen. Creating new organizations takes huge resources - both human and financial.
Our health was a big issue when it comes to human resources, and we all can list the various issues related to financial resources, especially given today's economy. A few months ago, it finally occurred to me that we might not be able to do it alone, but we could do it with the help of another nonprofit organization. So, I talked with a few people with the American Headache Society (AHS). Then I sat down and started a proposal for them to help us with this project. I took the proposal to ACHE for feedback, and it went through several iterations before finally being submitted to the AHS board of directors.
I'm going to cut to the chase here. Wednesday morning, at the AHS board meeting, the board voted to accept our proposal and created the American Headache & Migraine Association (AHMA). It will have a 10-member board consisting of five patients to lead the organization and five AHS members to help and support us. Programs will be developed as we gain members and members express their needs and desires. One program that is already set is to have an annual national conference. It will be held on the last day of one of the AHS conferences for doctors each year, and speakers will include both doctors and patient advocates. Our first conference will be Sunday, November 17, 2013, in Scottsdale, Arizona. The AHS board has appointed me the Chair of the AHMA. Dr. Paul Winner is the Co-Chair. The first set of officers will serve for three years while the organization is being set up. Beginning at the conference in 2015, patient officers will be elected by the membership every two years.