Learn how the second annual Emerging Advocate Program inspired 68 graduates to become leaders in migraine advocacy.
In 2022, the American Migraine Foundation’s Emerging Advocate Program entered its second year. Last year’s program united a record number of people with migraine and provided education and training to help them become better advocates for themselves and others in the migraine and headache space. When it was launched in January 2021, the Emerging Advocate program saw 25 Emerging Advocates complete the months-long training program and carry out inspiring migraine advocacy projects from planning to implementation.
We are pleased to share that this year’s program brought together 68 incredible Emerging Advocates who were excited to help AMF move the needle forward for migraine advocacy. Read on to learn how the Emerging Advocate Program helped them create projects that will make an impact in the migraine advocacy space.
Getting Started: Training and Planning Phases
Before creating their advocacy projects, the Emerging Advocates spent three months learning about migraine and what it means to be an advocate. After this initial educational training, advocates participated in live professional advocacy training with expert Cynthia Lockrey in order to empower and educate them so they can leave feeling inspired to try out their new skills.
Next, the planning phase kicked off with a workshop on how to remove the stigma surrounding migraine by being confident advocates for themselves and others in the migraine community. During this time, the Emerging Advocates also got to know one another better by sharing their migraine stories.
“It’s empowering to see so many passionate people with a common interest come together to move the needle forward for migraine advocacy. Their ideas and hard work as emerging advocates will pave the way for generations of patients to come,” says AMF’s Executive Director Amy Wickstrom.
After ideating and planning over the course of two months, each group presented their advocacy projects with the rest of the Emerging Advocates and AMF. Below are four of the incredible projects they worked on.
Reframing Your Migraine Story
The daily challenges that come with migraine often amplify feelings of isolation, hopelessness and self doubt in those who live with this debilitating disease. Reframing Your Migraine Story is a project that wants to help people with migraine change their perspective by rallying the inspiring voices of others in the community. The Emerging Advocates who worked on this project shared their own reframed stories to lead by example.
“I used to think that exercise and movement may only offer limited benefits in caring for hemiplegic migraine,” says Emerging Advocate Anna Easterling, DPT. “Now I know I can move in the world with grace and compassion unique to my health considerations. I am able to nurture my balance, strength and resilience—providing me with greater energy to serve others.”
For this project, the Emerging Advocates envisioned a social media campaign that would give people an opportunity to exchange their personal stories of resilience, lessons learned or insights about migraine. The Emerging Advocates hope this campaign will encourage their peers to reframe their own migraine stories and spread awareness about migraine to all corners of the internet.
High School Migraine Education
An estimated 8-15% of high school-aged children live with migraine (Cleveland Clinic, 2017). However, due to a lack of understanding in schools, many adolescents receive little support from their teachers and peers. The goal of the Emerging Advocates’ High School Migraine Education project is to create change within the school system to ensure these students receive the information and care they need to be successful in both their high school careers and life.
As part of their plan, the Emerging Advocates envisioned a detailed training program that would equip high school nurses, teachers and administrators with critical education on migraine. After the training, all high school staff members would be able to identify the signs of migraine and know how to accommodate students who live with the disease. The plan also included developing a lesson plan and additional resources for health teachers, who could then share this knowledge with their students to create a more compassionate school environment.
“If [students] can get that education at that age, they’ll carry that on into their lives, and maybe patients in the future won’t face so much stigma and disbelief,” says Emerging Advocate Lisa Brackett. “We can educate the generations of the future.”
Mental Health Support for People With Migraine
Many people with migraine experience mental health issues alongside the specific challenges of migraine. However, misconceptions about this relationship between migraine and mental health often prevent people from feeling understood and getting the care they need. The Mental Health Support for People With Migraine project aims to close this knowledge gap and provide avenues for support to help people with migraine take control of their mental health.
The Emerging Advocates put together a two-pronged plan that includes training and initiatives for peer support. The training component included educational activities that would help and encourage patients, caregivers, health professionals and advocates to learn more about the link between migraine and mental health. The Emerging Advocates would also bring together interested stakeholders to set up a mental health hotline/warmline and online forums to provide patients who struggle with their mental health a place to find support from people who understand.
“A warmline would be a place where you can de-escalate… a place where you can just let it go for a moment and someone on the other end of the phone knows exactly what you’re going through because they have those moments too,” says Emerging Advocate Keisha Patterson.
“It’s about reaching people in every different way… so everybody feels comfortable reaching out somehow,” Emerging Advocate Walker Young added.
Although the personal stories and needs of people living with migraine are constantly evolving, communicating that information with others does not come easy for most people. The idea behind the Migraine Journal project is to provide a user-friendly platform for patients to document and share their migraine journey to both improve their self-management and strengthen their support system.
In its full form, the Emerging Advocates see their project including an integrated website and app to help patients manage their migraine, access important resources and share relevant information with family members, friends and health care providers. The app would provide a journal-like interface where patients can record their migraine symptoms, triggers and history and have the option to share it with others. The website would coordinate with app data to provide users with resources relevant to their personal journey with migraine.
“Our migraine journal aims to guide communication and advocacy by using a very easily accessible format to help people build individualized stories and bridge the communication gap to be able to share their experiences,” says Emerging Advocate Stefanie Liquids.
Other projects created by the Emerging Advocate groups focused on the effects of caffeine on migraine and migraine in young children, also known as pediatric migraine. For both of these topics, the Emerging Advocates identified gaps in existing education and came up with innovative ideas to close them, which included creating interactive educational materials, launching research campaigns and sharing personal stories across national media.
“I am so proud of this year’s group of Emerging Advocates for all the hard work they put into their projects. It’s been a joy to see how far they have come from the first few weeks of training, and I can’t wait to see all the great things they go on to do with their inspiring ideas for migraine advocacy,” says Heather Phillips, Director of Programs and Advocacy for the American Migraine Foundation.
We are so impressed and excited by our 2022 Emerging Advocates’ projects, and we look forward to seeing what’s in store for the migraine advocacy space during next year’s Emerging Advocates Program. For more information, please contact Heather Phillips at [email protected].
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.