Educating and inspiring both fellows and patients with leadership potential can have a significant impact on migraine advocacy efforts. By expanding the reach of education and empowering individuals across different geographical areas, we can create a broader network of advocates dedicated to raising awareness and making a difference for those affected by migraine and headache disorders. It's essential to consider cultural, socioeconomic, and healthcare system variations to ensure the relevance and effectiveness of educational initiatives.Â
Migraine and Headache Advocacy Training
Miles for Migraine offers an advocacy training program called ACT Now. ACT stands for Advocacy Connection Team. This program connects patients, headache fellows, and doctors on how to advocate for migraine and headache disorders.
Advocacy Training for Fellowship Doctors: Miles for Migraine gives funds from walk/run/relax events to support local headache centers across the U.S. The fellowship programs are specifically designed to educate and train individuals who have a keen interest in becoming headache specialists. These fellows are asked to participate in the ACT Now program to receive advocacy training.Â
Advocacy Training for Patients: ACT Now offers training for patients who have shown potential or interest in advocating for migraine-related issues. It focuses on empowering patients with the necessary knowledge and skills to effectively advocate for themselves and others. It provides resources, tools, and ongoing support to help navigate the advocacy landscape.Â
Virtual Education and Conversations: The program utilizes ZOOM to conduct the training. This approach allows for wider accessibility and engagement across different geographical locations. The sessions are recorded to make them available for on-demand viewing.Â
Collaborate: By joining forces with Miles for Migraine and ACT Now, you can expand your reach with projects (ACTS of advocacy) to provide a more comprehensive support system and resources for advocates.Â
Online Community and Networking: Members become a part of Miles for Migraine online community where fellows, patient leaders, and advocates connect, share experiences, and collaborate. Participants foster a strong and cohesive advocacy community.Â
Program Details
ScheduleÂ
8 monthly sessions
Zoom training and discussion
Video recordings to learn from and review
ACTs of advocacy (projects for graduation)
| Day | Date | Time | ModalityFacilitator | Facilitator |
|---|---|---|---|---|
| Thurs | 8/6/2026 | 7:30pmEST | Stigma | Bill Young Joanna Kempner |
| Thurs | 9/10/2026 | 7:30pmEST | Create Your Elevator Story Handling Professional Stigma |
Jake Murtha (opens in new tab)(opens in new(opens in new tab)Deb Turk(opens in new tab) |
| Tues | 10/13/2026 | 7:30pmEST | Disease Campaigns: Synergy not Competition Creating an Effective Social Movement |
Rachel Kahn Best |
| Thurs | 11/12/2026 | 7:30pmEST | Advocacy for Equity in Access & Quality for the Underserved |
Dr. Cynthia Armand |
| Thurs | 1/14/2027 | 7:30pmEST | Advocacy with Payers Insurance Claims and Denials: The Process, Procedures and How to Overcome Denials |
Lindsay Videnieks |
| Tues | 2/09/2027 | 7:30pmEST | Advocacy as Part of the Treatment Plan | Karissa Arca MD |
| Thurs | 3/11/2027 | 7:30pmEST | How to Make an Advocacy Plan Potential Advocacy Projects |
Sarah Rathsack |
| Tues | 4/13/2027 | 7:30pmEST | Final Projects | Sarah Rathsack |
Session Resources
After a session is complete, resources such as video, articles, PDFs or links will be collected here for distribution.
Seebadri-White C, Yuan H, Young WB, Arca KN. Advocacy Connection Team-Now educational program for headache fellows and patients/caregivers: Assessment of educational objectives. Headache. 2024;64:374-379. doi:10.1111/head.14705
Conclusion:Â These results demonstrate that ACT-Now is effective at improving advocacy skills in a mixed cohort of patients and headache fellows, giving them the skills to create advocacy plans and engage with other patients and physicians, payers, and policymakers to create a more understanding, equitable and compassionate world for persons with migraine and other headache diseases.
Courtney Seebadri-White: Conceptualization; data curation; formal analysis; investigation; methodology; project administration; resources; writing original draft; writing review and editing. Hsiangkuo Yuan: Writing review and editing. William B. Young: Writing review and editing. Karissa N. Arca: Conceptualization; data curation; formal analysis; investigation; methodology; project administration; writing original draft; writing review and editing.
Completed ACT Projects
ACT Now projects are completed at the end of the session. Here are examples
ACT Now Created Medical Templates, Letters and Forms
For Patients
Insurance Appeal Letter- These letters are templates to help guide you in writing an appeal letter to your insurance company to help overturn medication denials.
Migraine Prescription Drug Savings Plans- See if one of these prescription savings plans can help save you money. Don't find it?Here's another list of possible medical savings plans.
Medical History Form- Use this medical history form to inform your doctor of past and present health conditions.
Medication History Form- Use this medication history form to inform your doctor of past and present medication and information.
Emergency Room Protocol Template- Have your doctor fill out this medical protocol to bring to emergency rooms as guidance on your treatment plan.
Migraine Resources for Patients Provided through Smartsest/Dotphrase- This template provides resources to provide patients with migraine advocacy and education through Smartset/Dotphrase
What Not to Say to a Patient and Try Instead. Suggestions on how to have a more productive conversation with your patients.
ACT Now Created Blogs
Fellow Led Acts of Advocacy
Patient Led Acts of Advocacy
Migraine Advocacy in (Social) Media
Follow Miles for MigraineÂ
Presenters
Karissa Arca, MD
Dr. Arca is a neurologist specializing in autonomic and headache disorders. She received her medical degree from Loma Linda University and went on to complete a Transitional Year residency and Neurology residency at Mayo Clinic in Arizona. During her final year of residency she was awarded the Manfred D. Muenter Award for Excellence in Clinical Neurology. She also competed a Headache Fellowship with additional training in autonomic disorders at Mayo Clinic in Arizona which is where she currently practices.
Dr. Arca is an active member of the American Academy of Neurology, American Headache Society, and the American Autonomic Society. She is involved in education and research and has a special interest in the cross-section of autonomic disorders and headache.
Cynthia Armand, MD
Dr. Cynthia Armand, is an Associate Professor of Neurology at Albert Einstein College of Medicine/ Montefiore Medical Center, and the Fellowship Director at the Montefiore Headache Center.
She earned her B.A. in Neuroscience Behavior from Wesleyan University and M.D. from the University of Connecticut. She completed neurology residency at Albert Einstein College of Medicine/ Montefiore Medical Center and continued as a headache fellow at the Montefiore Headache Center.
Dr. Armand is currently a member of the American Academy of Neurology (AAN), American Headache Society (AHS), and was a founding board member and vice president of the Society of Haitian Neuroscientists.
She is the current web editor at JAMA Neurology Author Interviews podcast. Her work with AHS includes that of past chair of the Underserved Populations in Headache special interest section, serving on the Society's membership, guidelines and electronic media committees, as well as active involvement in the Headache Resident Education Program's curriculum development. She is the co-chair of the AHS Diversity, Equity, and Inclusion Taskforce.
She was a recipient of the 2016 Frontiers in Headache Research Scholarship for her work on migraine special senses reported on social media and was named an Emerging Leader in Headache Medicine by the AHS in 2018. She is a recent graduate of the AAN's Diversity Leadership Program class of 2020. She recently achieved fellow status with the AAN.
Dr. Armand is an avid lover of neurology and health news with a strong interest in patient education, diversity and equity in healthcare & headache disorders, as well as social media as a valuable means of patient empowerment and knowledge.
Rachel Kahn Best, PhD
Rachel Best is an Assistant Professor of Sociology at the University of Michigan. Her book, Common Enemies: Disease Campaigns in America, argues that when Americans come together to fight social problems, they focus their largest efforts on diseases. Fighting one disease at a time has unintended consequences for health policy. Her current research uses computational methods to explore the relationship between disease stigma, advocacy, and policy outcomes.
Joanna Kempner, PhD
Joanna Kempner is an Associate Professor of Sociology at Rutgers University where she studies science, medicine, and inequality. Her work on health and justice, stigma in medicine, and the political suppression of science attempts to give a voice to those we rarely hear from. Her writing addresses the lack of effective treatments for pain, gender, race and stigma, and the extraordinary lengths that people will go to in order to find relief. She is the author of the award-winning book, Not Tonight: Migraine and the Politics of Gender and Health (Chicago), and is currently writing about cluster headache patient-led efforts to bring psychedelics back to medicine. Her research can also be read in a wide-range of academic and popular publications, including Science, PLoS Medicine, Social Science & Medicine, and Migraine.com.
Jake Murtha, M.D.
Jake Murtha is a neurologist and Headache Medicine specialist who works at the Medical College of Wisconsin and the Milwaukee VA Medical Center. Â He completed the ACT Now program as a fellow in 2021-2022. Â His current professional roles include Program Director of the MCW Headache Medicine Fellowship, Site Director of the Milwaukee VA Headache Center of Excellent, and Acting Neurology Section Chief at the VA.
 Jake grew up in the Milwaukee area and now lives in nearby Brookfield with his wife and 3 daughters, ages 8, 6, and 2.
Sarah Rathsack, Director of ACT Now
Sarah Rathsack is the director of the ACT Now program, working hard to bring advocacy to patients and doctors across the country and the world. While managing the program, she also works on the family programs, blogs, and websites for Miles for Migraine and Miles for Women's Health. She has been with the organization for 5+ years.
As a volunteer, Sarah is the largest fundraiser in the country. She fundraises for Cleveland, where she has spent her life with chronic migraine.
Sarah began her advocacy journey by starting the blog, My Migraine Life, and social media, where she shares about her life as a mom and migraine advocate.
Anikah Salim
Anikah joined her first Miles for Migraine Walk/Run in the fall of 2018 and increased her involvement in the Migraine Patient Education Days and Retreat Migraine, as well as other events. In 2019, she trained with the US Pain Foundation to become a support group leader. Personally understanding the challenges associated with traveling for in-person meetings, in January 2020, Anikah worked with Miles for Migraine to host and lead the first-ever weekly Miles for Migraine national virtual support group. There are over 85 registered participants, and it continues to grow daily. Anikah is involved in many events with Miles for Migraine. She is a graduate of the inaugural cohort of ACT Now graduates.
Anikah continues to share her journey and experience in an effort to increase migraine awareness and provide support to those suffering from migraine and their families. Whether it is migraine or another chronic condition, she wants everyone to know, "You are not alone."
Lindsay Lawrence Videnieks
Lindsay Videnieks, Co-Founder & Principal, Mortar Strategies. Mortar Strategies is a Washington, DC based government affairs firm dedicated to empowering clients with the strategic insights and advocacy needed to thrive in an ever-changing regulatory and legislative environment.
Lindsay brings over two decades of public policy, advocacy, and campaign experience, providing strategic counsel to clients navigating complex legislative and regulatory landscapes. She has advised Fortune 500 companies, stakeholder coalitions, and non-profit institutions on issues ranging from technology and manufacturing to healthcare, education, and appropriations. She previously served for 10 years as executive director of a national non-profit coalition serving the headache community.
A first-generation college graduate, Lindsay received high honors from the University of Maine at Orono, where she established the First Gen Honors Fund to support low-income students. She holds a law degree from the Catholic University Columbus School of Law and is admitted to practice in Maryland.
William Young, MD, President
Dr. Young is a neurologist at the Jefferson Headache Center. He received his medical degree from Penn State College of Medicine and has been in practice for 30 years. The Jefferson Headache Center is one of a very few academic headache centers in the country. The Center, founded in 1982, specializes in the treatment of patients with all types of headache pain. Dr. Young is the President of the Alliance for Headache Disorders Advocacy. Click for Detailed information pertaining to Dr. Young’s extensive research profile. Click for detailed information pertaining to Dr. Young’s extensive research profile, including research pertaining to migraine and stigma.
