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Headache on the Hill 2020

On Tuesday, I attended my first Headache on the Hill advocacy event in Washington, DC. It was an inspiring, educational experience where I learned a bit more about how our country works. I was one of 174 advocates who sought to get co-sponsors for a bill that would increase the number of residencies for people who treat addiction and pain disorder. We also asked for an amendment to the existing bill to increase fellowship funding so more people can train as headache specialists. We represented 45 different states and visited 255 offices of Congress members.

TeamArizona at Headache on the Hill 2020: Jenn Tingwald, Amy Tees, Don Vanderpool, Jamie Valendy, Kerrie Smyres, and Amaal Starling

TeamArizona at Headache on the Hill 2020: Jenn Tingwald, Amy Tees, Don Vanderpool, Jamie Valendy, Kerrie Smyres, and Amaal Starling

What is Headache on the Hill?

Headache on the Hill is an annual event where people who are affected by headache disorders visit the offices of their state senators and representatives with a specific “ask” to improve the lives of people with headache disorders. The ask is different each year and it’s tailored to specific activities in Congress or needs in the headache community.

The first Headache on the Hill, in 2007, was entirely healthcare providers. This year, about 70% of the participants were people who live with headache disorders or our loved ones who wanted to advocate for us. All six of us on TeamArizona have migraine and two are also healthcare providers, which was a great mix.

What We Asked For

The Opioid Workforce Act is a bill currently in both the House in the Senate that seeks to increase funding for more training programs in addiction medicine, addiction psychiatry, and pain medicine. We asked for co-sponsors for the bill and also asked for an amendment to the bill to include fellowships. The bill is currently written only for residencies, but pain medicine (and headache medicine) are fellowships, not residencies. We also asked that they specifically include headache medicine residencies in the bill, since they have different training programs than pain specialists do.

How You Can Help

Even if you didn’t attend Headache on the Hill, you can help by reaching out to your senators and representatives about the Opioid Workforce Act (which is H.R.3414 in the House and S.2892 in the Senate). First, check to see if they have already co-sponsored the bill (check here for representatives co-sponsoring H.R.3414 and here for senators co-sponsoring S.2892). If they have co-sponsored, please thank them for doing so and tell them how important it is to you. If not, please ask them to co-sponsor the bill. You can also ask them to amend the error in the language to include pain medicine and headache medicine fellowships (rather than residencies), but you can skip that part if it feels too hard to explain (I got training on it and it was still hard to explain!).

You can find your representatives and senators here. Calling is probably the easiest approach, but research shows that a personalized postal letter or personalized email are more effective than a phone call. Given that “personalized” is a key component of the effectiveness of the letter or email, I don’t have prewritten wording for you. My recommendation is to start with the “ask” and then tell them why it’s important to you. Be sure to include your address in the letter so they know you’re a constituent.

If you call, know that you’ll likely reach voicemail, so if you have anxiety about talking to a stranger on the phone, know that you probably won’t! Be sure to leave your zip code so they know you’re a constituent. I always add my full address at the very end of the voicemail, just in case.

Join Me Next Year!

Join me in 2021 to advocate for headache disorders in your state! Follow the Alliance for Headache Disorders advocacy on Facebook or Twitter to learn when the applications for next year open, which is usually in November. There is an application form to fill out and not everyone is accepted—it’s based on which states and areas within each state need representation—but please don’t be intimidated by the application form. You don’t need to have a social media presence or a history of advocacy to be able to participate, but it’s good information for them to have, so they ask for it.

A caveat: Headache on the Hill is the largest patient advocacy group without a corporate sponsor that does lobbying events like this. That means both that there’s no corporate intervention in the message (which is great!) and that it’s done on a shoestring (which can be a challenge for some patients who want to participate). Participants’ hotel rooms are covered for at least one night and usually a couple meals are covered, too. You’ll need to cover transportation to and from Washington, D.C., some of your meals (I brought a lot of nonperishable food and found a grocery store nearby), and for extra nights at the hotel. It’s a commitment, but it’s an incredible experience if you can do it. I honestly can’t count how many people have told me that attend Headache on the Hill was life-changing for them.

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My First Migraine Fundraiser Race!

Miles for Migraine logoHart: “Is this what people normally do on weekends?”

Me: “Right? It feels like we’re on vacation.”

We were walking to get coffee on a Saturday morning. It’s a walk Hart’s taken many times in the six years we’ve lived here, but I’ve never been able to join him. Until a few weeks ago.

Spending time with friends and family, working, exercising, cooking, cleaning my house, eating whatever I want… After 14 years of disability during which I have lived and breathed migraine, being able to do the normal activities of life feels like I’m on constant vacation. The indescribable joy I feel is one reason I will be walking in the two-mile portion of the Miles for Migraine race in Phoenix this Saturday. This is the first walk I’ve been healthy enough to participate in, so I will be celebrating the pleasure of having a body that is now capable of walking a couple miles without keeling over.

I’m also walking for the millions of people whose lives have been rendered unrecognizable by migraine. Far too many of us have spent years buried under this illness. I would still be housebound and nearly bedridden without programs that fund migraine research.

If you’re in town and able to join me, I’d love to see you on Saturday, March 18 (here’s the registration form; March 16 is the last day to register). And if you’d like to donate migraine research—even $5 is a huge help—here’s my Miles for Migraine pledge page. If you work for a company and would like them to match your donation, you can donate through that link and then email shirley[at]milesformigraine[dot]org for details on the follow-up paperwork.

Thank you for being a part of my life. Even if we’ve never met (or even emailed), the support of The Daily Headache readers has been vital to me through these difficult years.You’ll be on my mind during the walk. I wish relief for every one of you and believe that through efforts of programs like Miles for Migraine, it’s possible we will all find a reprieve.

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Migraine Information and Advocacy Video Series: Call for Participants

A national news anchor is putting together a five-part video series on migraine for a major health website and is looking for people who have migraine to participate in several segments. In addition to talking about basic migraine information and treatment, the series will also share what migraine is really like and how it affects our lives (and our loved ones). They want to hear the stories of people with a broad range of migraine experience (chronic or episodic) and of different ages, genders, and life circumstances. Travel may be required, but not necessarily.

I’ll be participating and would love for you to join me! If you’re interested, please fill out the form at this link and submit it by midnight Pacific time on Sunday, March 12. The questions are to help the producer find participants best suited to different videos and figure out where filming will take place. I will forward the information onto to her and she will contact you directly if you fit what they’re looking for.

Speaking with the producer has me excited about the project. They are genuinely interested in educating people about migraine and are earnest about these videos being used for advocacy. They also clearly want to get it “right”—to portray migraine and its impact accurately. I believe the videos will a great tool for spreading the message about migraine.

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Runnin’ for Research: Raise Money for Headache Disorder Research

runnin-for-researchOctober 8 is the date to participate in Runnin’ for Research! Three cities will host a 5K run and one-mile walk to raise money for research into headache and migraine disorders.

Runnin’ for Research was established as a 501(c)(3) nonprofit in 2015. It’s mission is to further “research, awareness, empowerment and advocacy in all areas of headache and migraine disorders.” The organization raised donated $17,434 to the American Migraine foundation in 2015 and $6,313 to AMF in 2014. Dr. David B. Watson, Teri Robert, and Dr. Brian Plato lead Runnin’ for Research.

Here are the details on this year’s races:

Date: Saturday, October 8
Sign-in Time: 8 a.m.
Walk/Run Time: 9:30 a.m.
Registration: $20 (T-shirts are guaranteed for everyone who registers for an in-person race before October 1.) To register, click on the city names below.

  • Kansas City/Parkville, Missouri: English Landing Park, Parkville, MO, 64152
  • Morgantown, West Virginia: Cheat Lake Park, Morgan Run Road Morgantown, WV, 26508 (The course is a packed limestone trail that is largely flat and shaded. It runs along Cheat Lake.)
  • Louisville/Jeffersontown, Kentucky: Sky View Park, 10416 Watterson Trail Jeffersontown, KY, 40299 (The course is a mostly flat asphalt trail.)
  • Virtual Race: Sign up as a virtual runner if you’re unable to attend a race (use any of the registration forms linked to above). You can run or walk in your hometown that day or just donate your registration fee to support this great cause. Virtual runners will not receive T-shirts.

Questions? Visit Runnin’ for Research’s website or email RunninForResearch@yahoo.com for more information.

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Quick Survey on The Daily Headache

survey-on-the-daily-headacheCan you help me with something? I’m trying to figure how to best sum up what I write about. Everything I come up with sounds flat and academic. I have a couple questions:

  1. How would you characterize what you read about on The Daily Headache?
  2. What topics do you most enjoy reading about on The Daily Headache?

You can leave your comments below, on social media, or by emailing
kerrie[at]thedailyheadache[dot]com. Answer either or both. Thank you!