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National Headache Foundation Prepares for Headache on the Hill

The National Headache Foundation is proud to again be participating in Headache on the Hill, an annual congressional advocacy event.

Headache on the Hill participants visit the offices of approximately 130 members of Congress to raise issues on behalf of those with disabling headache and migraine, including the lack of research and stigma surrounding these diseases. Participants include physicians, researchers, as well as patients.

washington-d-c-statue-sculpture-the-peace-monument-62318Patients play an especially important role in the event. When Headache on the Hill started in 2007, all participants were physicians. Now, according to Robert Shapiro, MD, PhD, only about half of the participants are physicians.

Including patients in Headache on the Hill is an important aspect of the event.

“The most important thing people bring is their own story,” William Young, MD, President of the Alliance for Headache Disorders Advocacy (AHDA), the non-profit organization that organizes Headache on the Hill.

Young said patients volunteering their time and paying for transportation to Washington, D.C. impacts the discussion with Congress when they meet. He acknowledges that the organization asks a lot of patients, especially those who are ill from their headache or migraine. However, many participants believe it to be an important experience and return year after year.

“Most people find it to be a gratifying experience.” Shapiro said. “They are grateful they have an opportunity to speak out on an issue that’s very personal to them and extremely important. They are very grateful the way our government works. They are in access to people who have power to change things.”

The two-day event will be held on February 13 and 14, 2017.

On day one, patients are educated about the organization’s “ask” for that year. The “ask” is a specific action Congress can take to improve the lives of those with headache and migraine.

As a result of last year’s Headache on the Hill, Senators Brian Schatz and Orrin Hatch introduced the “Safe Treatments of Opportunities to Prevent Pain Act,” which was signed into law by President Barak Obama in July. Due to the act, the National Institutes of Health (NIH) must fund pain research equal to its impact on society. Shapiro and Young believe this will increase the research on headache disorders; however, they both know there is more to accomplish.

Patients interested in participating in the 2017 Headache on the Hill are invited to submit an application. Applications must be submitted by December 15, 2016 and applicants are asked to carefully review the details of dates, location, costs, and cancellation policy.

Katie MacDonald, a patient of Dr. Shapiro, who began participating in 2015, believes it is one of the most rewarding things she has done. “It can be a big commitment, but it’s a big honor,” she said.

Headache and migraine patients unable to make the trip to Washington, D.C. can still make a big impact.

“I think everybody is a patient advocate, but they may not realize it. We all have a voice and we use it in a different way,” MacDonald said.

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