76 graduates become leaders in migraine advocacy, inspire action in the program’s third year

The American Migraine Foundation’s (AMF) Emerging Advocate Program entered its third year in 2023, with its largest class of advocates. This year, 76 people living with migraine completed the months-long training program and developed inspiring innovative migraine advocacy projects addressing existing gaps.

The Emerging Advocate Program trains advocates on migraine and headache disorders and advocacy techniques in a patient-friendly manner. Advocates become part of a remarkable network of migraine leaders all over the United States and have an opportunity to take action with a small group project. With this year’s program, more than 380 emerging advocates in total have become leaders in migraine advocacy.

These incredible advocates move the needle forward for migraine advocacy. Read on to learn more about the program and some of the incredible ideas brought forth by the Emerging Advocate Program class of 2023.

 

Getting Started with Training

The first phase focused on education and advocacy. Advocates completed weekly training modules dedicated to various aspects of migraine, such as how to speak about migraine, migraine myths and facts, epidemiology, treatments and resources.

Advocates participated in a live training with Cynthia Lockrey, an expert on teaching individuals to champion their personal stories for change. Advocates learned the key elements of advocacy: storytelling and sharing facts.

“The Emerging Advocate Program gives those of us living with migraine a chance to share our real-life experiences with migraine and turn them into something that helps other individua.,” said advocate Laura VanSteenwyk. “Many of us have been advocating for ourselves for years. The Emerging Advocate Program allowed me to identify and act upon advocacy opportunities to help and empower others living with the disease as well.”

 

Turning Ideas Into Action

Next, advocates worked in small groups to identify an issue or challenge related to migraine that could be addressed with advocacy. The groups determined topics that resonated with them and then developed possible solutions.

One group focused on creating a database of crowdsourced triggers from movies, television shows or video games. Another pushed for policy change at the federal level to have migraine recognized in the Social Security Blue Book. From educational tools and campaigns to mentorship and action plans, the groups focused on important and creative topics. Learn about a few of the plans below.

 

Migraine Mentorship

Although the advocates in this group had various migraine experiences, a common thread united them–all had questions at the start of their journey and agreed a mentor would have been helpful to them.

Their initiative would pair trained mentors with mentees for support and advice. Interactions could take place in person, virtually or over the phone. The pairs would initially meet 4 – 8 times, or for an extended time if desired, and cover a loosely defined set of suggested topics. Mentors would be age 10 or older and have at least two years of experience living with migraine, while mentees would be age five or older and newly diagnosed with migraine.

Research suggests that peer programs like these can improve the mental health and quality of life of both participants. [1]

 

Addressing the Impact of Parental Migraine

Parents with migraine often feel guilty about how their illness affects their relationship with their children. Similarly, a lack of understanding about migraine can cause children of parents living with migraine to feel confused, afraid or anxious. While resources exist to explain a migraine diagnosis to children, few resources help children understand their parents’ diagnosis. The group wanted to help provide a coping mechanism for children and help them feel less confused and alone, and take the burden off of parents to develop materials on their own.

The group proposed a series of videos to explain migraine, the lifestyle changes a parent may need to take, information on what a person can do together during an attack and how a migraine attack might make the child feel. The videos would be targeted to specific age groups, using age-appropriate language; and additional materials could be created as resources for schools, healthcare providers, and/or counselors.

 

Roadmap for College Students Living with Migraine (Migraine Action Plan)

Resources for making the transition to higher education after high school for people living with migraine are often not available and decentralized. If a person with migraine does not plan accordingly, physical, mental and social functioning can be challenging, which can lead to a diminished quality of life. To ease the transition, the advocates in this group conceptualized a national website with curated information.

“Successfully transitioning to college as a person living with migraine requires a lot of planning,” said advocate Jennifer Berson. “Knowing general timelines and tips goes a long way toward building necessary competence and skills for the students.”

The website would have information about migraine, its impact on mental health and checklists to support the transition to college. Students could find information about how to explain migraine, find a therapist, practice mindfulness and understand important academic and housing accommodations.

 

More Visible (How to Change People’s Misperceptions of Migraine)

People are often reluctant to discuss migraine. While facts and statistics help to de-stigmatize and raise awareness, many times, it is hard for close friends and confidants to understand what someone living with migraine is going through. The advocates who worked on More Visible aim to change the perception and understanding of migraine with personal stories.

“Something that just stuck with us is this idea of migraine being called an invisible disease and wanting to make people feel more visible,” said advocate Lindsey de los Santos. “We need to get real and specifically tell [people] what it’s like and how to support us.”

The group imagined a campaign where people living with migraine would tell their stories via videos. The stories could be combined into a montage or broken into smaller pieces for a social media campaign.

Using stories in this way can change the narrative about migraine and help people who do not live with migraine understand.

 

Growing Together as Advocates

We are inspired of the work and ideas generated by all of the emerging advocates. Working together and developing ideas bond people and forge lifelong friendships.

“I am so proud of the emerging advocates for their creativity and hard work. It is inspiring to watch advocates work together on such innovative and remarkable ideas,” said Heather Phillips, Director of Programs and Advocacy for the American Migraine Foundation. “It is also rewarding because the groups grow together, becoming close friends and allies to be supportive partners in this journey.”

Applications are currently open for the 2024 Emerging Advocate Program. To learn more and apply, click here

 

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 Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool. Together, we are as relentless as migraine.

[1] Shalaby RAH, Agyapong VIO. Peer Support in Mental Health: Literature Review. JMIR Ment Health. 2020 Jun 9;7(6):e15572. doi: 10.2196/15572. PMID: 32357127; PMCID: PMC7312261.