How Can You Advocate This Coming Spring?

Advocacy_Graphic

Well that’s a good question and one I hope all of you want to see the answers to. Advocacy is how we will move research for new preventatives, abortives, and perhaps someday even a cure via genetics; personally I’m very optimistic about genetics! Today I’m going to make a few lists for the novice advocates, and then projects for those that are more experienced.

Novice Advocate Tasks for Spring 2015

  • Start working on your writing and read some literature regarding headache disorders or vasculitis before you go ahead advocating, the last thing you want is to begin by giving your readers incorrect information as once someone from the community sees it they’re likely to jump all over you for it.
  • If you have Vasculitis register to participate in the V-PPRN or Vasculitis Patient-Powered Research Network this is a way for you to offer your information up for invaluable research to be done and the chance to find clinical trials for yourself or your fellow sufferers.
  • Similarly if you’re a Cluster Headache sufferer join the ClusterBusters patient registry and you will receive information about clinical trials perhaps someday when the FDA allows BOL-148 into human trials.
  • Go to a local support group or find a chapter of a non-profit for your illness nearby and go to a meeting
  • Remember to always keep advocate business cards on hand with your contact information or else it’ll be far harder to make it further in the advocacy world.

 

Experienced Advocate Tasks for Spring 2015

  • Go to HoH also known as Headache on the Hill if you think you’ve got your facts straight and please don’t be star struck and forget all of what you wanted to say. Contact your congressmen and senators local offices throughout the year so that they know your name when it comes time to meet with you.
  • Guest post articles on various chronic illness websites
  • Create your own blog that way you can share your story as it unfolds with the world especially men with migraines there’s a huge need for more men to advocate to show we too are a part of the migraine population and deserve more of a voice.
  • Reach out to non profits you’re a member of or want to join and see how you can help these organizations are always looking for volunteers they require individuals with all sorts of skills so tell them what you’re best at and expect at least a polite response with a no thank you at worst!
  • Create simple and easy to read medical flyers to leave at your doctor’s offices, at hospitals, in waiting rooms at Urgent Care, and posted on phone line poles throughout the community.
  • Do a run for Migraine Research to benefit AHMA if you can it’s the perfect opportunity for a competitive, fundraising, and athletic test of your strength whilst raising much-needed fun for research on headache disorders.

Remember folks you, just a single person, can be the difference between a research grant happening or getting buried in the denied pile! You can also be that person I your community that’s known for educating everyone about migraine, cluster headaches, and vasculitis. Prepare to be active in Spring of 2015 it’s time for yet another year of progress!

 

Please if you have the money to spare spend $10 today on research for our horrible headache disorders by donating to the American Headache and Migraine Association also more commonly known as AHMA led by advocate Teri Roberts! Every dollar counts towards better conferences, better research, and more awareness! Click here to find their donation page! That link should work but if not there’s a big gold-colored Donate button in the top right corner of the AHMA page.

2 thoughts on “How Can You Advocate This Coming Spring?

  1. I want to do what I can and having my own blog is the best way I have found. I see a lot of what you deal with, but it is often a different world because you are in the US and I am in Canada. I wish it didn’t matter so much. After all, doesn’t matter what country we’re in. Pain is pain. Rare diseases are ignored, no matter where they affect people.

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