How the Emerging Advocate Program empowered migraine patients to become active advocates for themselves and others
Launched by the American Migraine Foundation in Jan. 2021, the Emerging Advocate Program brought together migraine patients throughout the U.S. to help them become advocates in the migraine and headache space. The 25 Emerging Advocates successfully completed the program this summer. They will continue to assist AMF in mobilizing regional grassroots efforts for national migraine advocacy.
We divided the program into two phases—a training phase and an action phase—to make the advocacy journey smoother. Read on to learn more about how the Emerging Advocate Program has provided opportunities for patients to take ownership of migraine advocacy.
The Training Phase: Understanding Migraine and Advocacy
The majority of the program provided virtual education to the Emerging Advocates. From the basics about migraine as a disease to the current advocacy landscape, AMF prepared a variety of resources—including quizzes, articles and five 20-minute videos—to give participants a comprehensive understanding of the disease and empower them to be better migraine advocates. The participants devoted about six hours over three months to learning the material.
“The Emerging Advocate Program brought us to be a part of the process and really taught us about migraine,” says Emerging Advocate Cherise Irons, “I’m an advocate by nature. I have migraine, and it’s part of my life. The program has just made me more empowered. It’s allowed me to say, ‘We are here. You are going to pay attention to us [people with migraine].’
The training went beyond informative videos and quizzes about migraine—it emphasized the power of storytelling. Dr. Rashmi Halker from Mayo Clinic taught a session on the importance of language and how to implement appropriate language use in migraine advocacy. Each of the 25 Emerging Advocates has personal experience with headache disorders, and the program enabled them to be more vocal about their migraine stories.
The Action Phase: Developing Concrete Plans
Cynthia Lockrey, a coach for patient advocacy, led two one-hour interactive workshops to help the Emerging Advocates become more confident and prepared when sharing their migraine stories. The participants learned how to advocate for themselves and others in various ways, from one-on-one conversations to federal-level discussions.
“In our training, we talk about our stories, even in little short snippets to people. You almost always are going to connect with someone who’s been impacted by this disease, whether it’s someone who has a loved one with [migraine], or they themselves suffer from migraine. So that’s what I’ve learned—keep telling your story, and you will connect in ways you’re not even aware of yet,” says Emerging Advocate Teresa Battenburg.
Then, participants were assigned to different groups and applied what they had learned by designing an advocacy project together. Each group attended a one-hour kick-off session—facilitated by a liaison from AMF—to learn how to initiate a migraine advocacy project. At the end of the two-month action phase, the groups presented their projects to each other and AMF. Here are three of the projects that our advocates worked on.
Empowering College Students Living with Migraine/Headache Disease
Empowering College Students Living with Migraine/Headache Disease is an awareness campaign for college students living with migraine. More people are starting to recognize migraine as a disease. But it can still be challenging to get academic institutions to acknowledge headache disorders and provide appropriate accommodations.
To tackle this issue, the group split their project into two stages: identifying and accommodating the disease. The Emerging Advocates planned to create infographics to distribute at higher institutions to educate students, faculty and staff about different types of migraine. They came up with a list of accommodations that colleges should make for students with migraine. These included note-taking services and flexible due dates.
“Going through the process of doing the project was very powerful in terms of working with a group where we all live with migraine. All of us were in different places with our disease, but we still put together a high-quality project. And that creates another layer to the advocacy work,” says Emerging Advocate Teresa Battenburg.
People with migraine don’t always get the treatment they deserve—FDA-approved migraine-specific medications like gepants are inaccessible to many in the migraine community. And that’s what the #WhatAboutMe initiative wanted to address.
To raise awareness of medication inaccessibility, the Emerging Advocates planned to launch a social media campaign by taking selfies with a hashtag written on their palms: #WhatAboutMe. The group hopes more migraine patients will become involved by posting their pictures and that a widespread campaign will get the attention of public figures.
“I believe it takes people like us to stand up, to keep talking. The message is simple—what about me? And I’m fighting for this message, and I’m fighting for others,” says Emerging Advocate Christine Cottrell.
Migraine in the ER
The Migraine in the ER project aims to ensure a more compassionate treatment to migraine patients in the emergency room. Many patients reported suboptimal care in the ER, including long wait times and a lack of understanding from healthcare providers.
“When someone with migraine goes into an emergency room, they’re often labeled as a drug seeker. And that needs to stop,” says Emerging Advocate Melissa Webb. “The Emerging Advocate Program let me create this project idea. That’s what I’ll always be grateful for—they let me take this creative nugget and run with it.”
The finished product? A step-by-step plan designed to better the emergency room experience for people with migraine nationwide. The group plans to start the project by conducting a focus group of patients, doctors and nurses. Once they identify training needs for ER practitioners, they hope to implement and spread this program to other hospitals nationwide. The group also planned to educate people with migraine on how to prepare for an ER visit.
Three other projects focused on health care policy reform, migraine in children and making migraine information online more accessible for others. Storytelling and information sharing, two skills that the EAP focused on, were key to these projects. For example, one group proposed creating an anthology of patient experiences with health plan barriers to spur policy reform. Another group designed a comprehensive infographic to help people find migraine resources online. “Migraine from Me to You” was an awareness campaign targeting kids and medical professionals to spread the word about migraine in children.
“To see migraine advocates draw from their lived experience to identify needs and propose solutions was inspiring,” says American Migraine Foundation Executive Director Nim Lalvani “Our hope is to work with community members to bring these types of projects to fruition.”
We remain inspired by all the great work that the Emerging Advocates have put in, and we are looking forward to the program next year!
The American Migraine Foundation is committed to improving the lives of those living with this debilitating disease. For more of the latest news and information on migraine, visit the AMF Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.