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Voices from the Hill

By Jorie Logan-Morris and Jeannette Rotondi

Every year in February, advocates for migraine and headache disease come together in Washington, D.C., for an event known as Headache on the Hill (HOH). HOH is organized by the Alliance for Headache Disorders Advocacy (AHDA) and has been running now for 12 years.

During HOH, advocates of all kinds — migraine and headache patients, caregivers, doctors and specialists, and more — work together to lobby and meet with Congress, presenting important legislation and “asks” related to migraine and headache disease in hopes that lawmakers will support our requests. This in turn helps bring more national awareness to migraine and headache disease and ultimately further supports the millions who suffer all across the country.

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While National Migraine and Headache Awareness Month (MHAM) wrapped up in June, U.S. Pain Foundation is continuing to raise awareness through its traveling display of the INvisible Project: Migraine second edition. Below is a photo recap of June and the ongoing efforts to bring about change for people living with headache and migraine disease.

End of May
The INvisible Project: Migraine second edition was released in time for MHAM.

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It’s National Migraine and Headache Awareness Month (MHAM), and we have a number of exciting developments to kick it off, as well as numerous ways to participate. Be sure to follow U.S. Pain on Facebook and Twitter to stay up to date on the latest news, events, and ways to get involved.

First-ever migraine prevention drug approved

On May 17, the Food and Drug Administration (FDA) approved the first-ever migraine preventive drug. Often referred to as a CGRP (calcitonin gene-related peptide) or CGRP inhibitor, the drug blocks the CGRP receptor that is believed to play a role in migraine.

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Melissa Dwyer, who took her own life at age 22 due to chronic migraine disease, is among the stories highlighted.

The INvisible Project: Migraine second edition was published at the end of May, just in time for the start of Migraine and Headache Awareness Month. The magazine features the stories and photos of 10 individuals living with migraine and headache disorders, building on the first INvisible Project: Migraine edition that was released last year.

“We are so thrilled to once again highlight the challenges and triumphs of people living with migraine and headache disorder,” says Nicole Hemmenway, interim CEO of U.S. Pain. “This population is too often overlooked and undertreated.”

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U.S. Pain Foundation is teaming up with Coalition For Headache And Migraine Patients (CHAMP) for National Migraine & Headache Awareness Month (MHAM) this June. If interested in taking part, please respond quickly to ensure your efforts are completed in June.

Here are three ways you can get involved:

MHAM Proclamation: Submit a request for a ceremonial proclamation from your state or local representatives. We’ll provide the template, instructions and support. Interested? Send an email to mham@uspainfoundation.org for more details and please include the state in which you live. Thanks to Ambassador Jeannette Rotondi for her work on this project.

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U.S. Pain will hold its third annual Real Hope, Real Heroes Gala: A celebration of real-life heroes on June 2 in Scottsdale, AZ. The goal of the evening is to shed light on the invisibility of pain while also honoring amazing pain warriors. All proceeds go toward U.S. Pain’s programs and services.

This year, the gala will feature participants from the last two editions of the INvisible Project, which highlighted migraine disease and rheumatoid arthritis/rheumatoid disease respectively. The INvisible Project is a print magazine and website that highlights the bravery and perseverance of pain warriors through stories and photos.

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On Feb.12 and 13, representatives from U.S. Pain Foundation proudly participated in Headache on the Hill (HOH) in Washington, DC. Now in its 11th year, HOH is an event that gathers patients, caregivers, and providers together to advocate on Capitol Hill on issues related to headache, migraine, and cluster diseases. This year marked the largest attendance with a total of over 140 advocates representing 40 states.

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As the flagship program of the foundation, the INvisible Project  unveils the truth about what it means to live with pain and thrive despite it. In an effort to support disease-specific communities, the latest edition of the project focuses on migraine disease — coming out just in time for Migraine and Headache Awareness Month in June! (For information about getting involved with Migraine and Headache Awareness Month, check out this article from last month’s eNews.)

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Currently, 36 million Americans are living with migraine disease; four million of them have chronic migraine, meaning they have 15 or more attack days per month. There are many different ways you can help spread awareness and stop the stigma of living with migraine disease during Migraine & Headache Awareness Month this June.

“By getting involved in June, you can help so many people dealing with this misunderstood, debilitating condition,” says Katie Golden, a California pain ambassador who has migraine disease. “Every little bit helps.”

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