Why be a migraine advocate?
Becoming a migraine advocate empowers patients. It changes the focus of attention from, 'Why is this happening to me?' to, 'How can I use my experiences to help others?' When you participate in advocating for yourself and others, you can learn about the latest treatment options, connect with others living with migraine, and how to put pain to good use.
How to be a migraine advocate
There are many ways to be a migraine patient advocate:
- Volunteer online in social media
- Contribute your talents
- Take action to change policy
- Share posts & articles on social media
- Donate to our charity or help with fundraising
- Attend an event
- Start a local or online support group
Migraine disease receives minimal federal funding for research. People living with migraine disease often experience lack of accommodations in the workplace or at school. Many are forced to quit their jobs or worse, lose their jobs, due to this disabling disease. Applying for disability is rarely an easy, seamless process. Family, friends and coworkers of those living with migraine disease commonly have insufficient understanding and empathy. All of these things contribute to the persistent stigma that exists for those living with migraine disease.
Volunteer Online in Social Media
Become an admin or moderator in one of our migraine social media groups such as Migraine Meanderings and Hope for Migraine on Facebook, or our Instagram, TikTok, Reddit or Pinterest channel. We are always looking for people who are willing and able to give their time!
Generally, people are considered for admin or moderator roles when they are active in a group with posts and comments, supportive, and are able to be team players. But bear in mind that this is generally one of the more time-consuming advocacy opportunities, so it is not for everyone, especially if you are raising a family and working full-time as well as living with migraine disease!
Contribute Your Talents
There are ongoing opportunities to write for migraine organizations such as Migraine Meanderings, as well as to submit your art, poetry, help with admin, etc. Part of being an advocate is speaking out, helping change the perception and stigma surrounding migraine disease, telling people what it is really like, letting other people with migraine know that they are not alone!
If you are interested in this, let us know! The possibilities are as varied as your imagination, skills and desire to help!
Take Action to Change Policy
If the research funding and insurance obstacles for migraine research and treatment make you angry (and they should), you can take action. Many opportunities exist to raise your voice to Congress and policymakers alike. Each year, the Alliance for Headache Disorders Advocacy holds its Headache on the Hill lobby day in DC. The event gathers over 100 healthcare providers, migraine and cluster advocates and patients themselves to unite on “asks” of Congress. These asks are typically focused on increasing awareness of the impact of headache diseases to help increase the available research funding.
There are also various other ways to get involved such as writing op-eds or letters to the editor, sharing your personal story with policymakers via emails, or even testifying for or against legislation at the state and federal level.
Share Posts/Articles on Social Media
Help raise awareness and stop stigma by LIKING, JOINING, AND FOLLOWING Migraine Meanderings on Facebook, Instagram, Reddit, Pinterest and Twitter. Then repost the articles, memes, and videos onto your own social media accounts. Our largest group is our public Migraine Meanderings Facebook group, and every post there is shareable!
Donate to the Cause or Help with Fundraising
Migraine Meanderings is a dba of Hope in Pain Inc., a 501(c)(3) registered charity. We rely on the donations of our supporters for our advocacy work. Please consider supporting us with a one-time donation, monthly donation, or doing a birthday fundraiser for us! All donations are tax deductible to the extent of the law. Click here to learn more or to donate to Migraine Meanderings.
Attend An Event
Upcoming virtual events organized by Migraine Meanderings can be found on our Events page HERE. We regularly host webinars with headache specialists about hot topics to do with migraine! If there is a particular topic you would like to see us address, please let us know via our Contact Us page.
Start a Local Support Group
Not only do local groups provide much needed support, community & guidance for people with migraine and other headache disorders, but they also help raise the profile of awareness within the broader community. Consider starting or helping with a local support group at your hospital, community center, religious organization or elsewhere. Organizations like the US Pain Foundation and Miles for Migraine are available to help with this.
Other Migraine Advocacy Organizations
The Alliance for Headache Disorders Advocacy organizes the annual Headache on the Hill event in Washington DC, as well as other actionable items such as sign-on letters.
The American Migraine Foundation provides education, support, and resources for people living with migraine. Its mission is to advance migraine research, promote patient advocacy and expand access to care for patients worldwide. By educating caregivers and giving patients the tools to advocate for themselves, they give a collective voice to the migraine community.
The mission of The Headache & Migraine Policy Forum is to advance public policies and practices that promote accelerated innovation and improved access to treatments.
Miles for Migraine offers in-person and virtual races, as well as regular support groups for people who live with migraine.
The work of the NHF is through education, raising awareness, advocacy, and research. They established the Certificate of Added Qualification in Headache Medicine for HCPs
The U.S. Pain Foundation works to enhance the quality of life for people with pain, improve patient outcomes, address access and affordability issues, and increase public awareness and empathy.