Migraine Advocacy Through the Eyes of Nancy Harris Bonk

Migraine advocacy can mean many things. It can range from positive self-talk about the disease (seriously, I think this may be the most critical form of advocacy!), to sharing your story with others or volunteering with groups to further migraine education and research.

Nancy Harris Bonk does all of the above and more. She was an inspiration to me when I first began migraine advocacy, and she has become a dear friend. I asked her to share some of her experiences with Migraine.com readers so you can see the many possibilities available for advocacy.

Finding a passion for supporting others with migraine

I was desperately looking for help in managing my daily, chronic head and neck pain after I sustained a TBI (traumatic brain injury) in 1996. By 2003, I was barely functioning. My family and I were suffering, so I turned to the internet looking for support, help, and answers.

I found a community on MyMigraineConnection and quickly saw how important support and self-advocacy are. I started moderating their migraine discussion forum and found my passion!

Redefining what it means to be a migraine advocate

It's an honor and a pleasure to help people navigate their migraine and headache disease journey. The word 'advocacy' can be polarizing and scary. However, advocating for oneself is paramount when living with any chronic health issue, and migraine/headache disease is no exception.

Migraine advocacy comes in many different forms — it's not always about reaching out to our elected officials, but can be as simple as reposting pertinent, accurate posts on social media, sharing educational brochures at the doctor's office, or getting involved with migraine/headache organizations, and so much more.

A timeline of leadership in the headache community

In addition to moderating and making occasional contributions on Migraine.com from 2011-2025, I'm active in other areas of the migraine/headache space.

• MyMigraineConnection: I was a Health Guide at Health Central's MyMigraineConnection.com from 2003-2013, contributing articles and moderating their community forum. I love providing accurate resources and support. I've also contributed multiple articles to Hormones Matter.
• In Person Support Groups: In 2011, while living in Buffalo, NY, I started the first local, in-person support group at Dent Neurologic and facilitated it until 2019, when I moved to Albany, NY. It was uplifting to see people understand they're not alone in their migraine/headache disease experience and get the support they craved.
• Chronic Migraine Awareness: From 2014 to 2024, I was the COO/VP of Chronic Migraine Awareness, Inc., working to amplify the voice of the chronic migraine community. I am proud to say I was instrumental in getting CMA some of its first funding, planning its first public event, and expanding its reach.
• CHAMP: I am fortunate to be able to be part of the Coalition for Headache and Migraine Patients, CHAMP, via my association with CMA, and was one of the leads on a program called ECHO (Education Council for Headache Online). ECHO served as an educational resource and online community that aimed to provide skills to help patient moderators and content creators active in the migraine and headache space improve their skills and provide training on best practices in social media community management. We provided 18 webinars that included social media, moderation and support, digital content creation/promotion, public relations, storytelling, and more during the first year, which was really exciting.
• PCORI: I was privileged to be a PCORI (Patient-Centered Outcomes Research Institute) Merit Reviewer in 2023, and found the process fascinating. As a Merit Reviewer, I reviewed applications submitted for funding in the migraine space and provided my expertise.
• Alliance for Headache Disorders Advocacy: In 2020, I joined the Board of the Alliance for Headache Disorders Advocacy, representing CMA, and I also sit on the Lunch and Learn committee. We plan, research, and execute a monthly webinar that provides Headache on the Hill advocates and the general public with education on what's happening in the migraine/headache community. The Lunch and Learn series "is a dynamic, monthly program designed to educate, empower, and engage individuals in the headache and migraine community."
• National Headache Foundation's Patient Leadership Council: I'm currently on the National Headache Foundation's Patient Leadership Council, working to "engage people living with headache disorders to provide important insights for the NHF regarding their awareness, advocacy, education, and research endeavors."

Reflecting on the rewards of patient leadership

It's tough to pick one [piece of advocacy work I'm most proud of], to be honest. I've really enjoyed almost every aspect of advocating. If I had to choose, it would probably be helping CMA get its original funding and spreading its reach.

Advocacy is incredibly rewarding as it allows us to make a real impact on the lives of those who are often misunderstood, dismissed, and undiagnosed. By raising awareness, advocating for better treatment options, and challenging the stigma, we help ensure that people with migraine and headache disease feel heard, supported, and empowered.

Advice for the next generation of migraine advocates

Pace yourself! Burnout can crop up when you least expect it. Self-care is so important, especially when living with chronic illness. Set boundaries, practice self-care, and most of all, advocate for yourself.