Fellows and Advocacy Training Program: ACT Now

I work for the ACT Now fellows and advocacy training program for Miles for Migraine. I’d love to tell you more about it! ACT Now stands for advocacy connection team and connects volunteers in many ways. The fellows and advocacy training program are one. It is a program that trains doctors, patients, and caregivers to be advocates. As a migraine advocate, I like connecting with other people living with migraine and their support teams. But, I will admit that I haven’t made much connection with fellows or doctors regarding building awareness. I have learned so much personally and am in awe at how advocacy can be sparked into action. It feels good to be building up both patients and providers.

A fellow is a physician who has completed their residency and elects to complete further training in a specialty: VeryWell Health

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ACT Now Fellows and Advocacy Training Program

The Executive Director, Shirley Kessel, and Doctor Bill Young created the program. The program includes monthly virtual meetings that educate and discuss various topics on advocacy and the field of migraine and headache disorders. These meetings expose the group to stigma, policy & regulation, how advocacy should be a part of the treatment plan, and much more. I used the “How to tell your story” session to guide my Headache on the Hill speech and felt more confident with the training I received. I had the opportunity to be on a team with an ACT Now fellow for Headache on the Hill. Our shared experiences in the program led us to lobby congress together and make a connection in the same city.

Each advocacy training contains a knowledgeable speaker to educate and answer questions. Break-out sessions also provide intimate discussions about these topics from the patient/caregiver and doctor’s perspectives. By the end of the program, it is the hope that participants will do advocacy projects. We hope they continue to grow in their advocacy efforts with the knowledge and inspiration gained from the ACT Now program.

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Miles for Migraine Fellows

Did you know that each walk/run/relax event held across the United States gives back locally? When you fundraise and participate in an event, your donations go to a local participating headache center. 100% of the funds raised through events are donated to the fellowship training programs. In 2020 (the year of the pandemic), Miles for Migraine awarded $592,984.94 to those headache fellowship programs.

With our country’s severe shortage of headache specialists, part of the mission is to provide the necessary funding to encourage doctors to enter the field. The money granted to the fellowship programs is used to help fund migraine and headache research initiatives, education, and salaries.

This year, the participating centers are asked to nominate a fellow to join the advocacy training program to educate and inspire future doctor advocates. Personally, this is exciting for me. As someone living with migraine, I have seen my share of educated doctors and others who clearly don’t understand the disease. Fellows’ training in advocacy makes me excited for their patients’ future and careers. This program highlights the impact on life and exposes the stigma perceived.

Headache specialists are few and far between, and Miles for Migraine supports fellows pursuing migraine and headache medicine. Without funding, Miles for Migraine cannot donate funds or continue programming, which is crucial to building migraine awareness throughout the U.S.

If you are willing and able to donate, please consider donating to Sarah Rathsack-Team My Migraine Life. THANK YOU!

Need for Advocacy Training

Miles for Migraine believes that advocacy requires concerted efforts across many domains:

• Patient-to-patient,
• Patient-to-person without headache
• Provider-to-provider
• Provider and patient to payor
• Legislator
• Educator
• Business
• etc…

Because of this high need and low advocate numbers, the ACT Now fellow and advocacy program builds on these relationships. The advocacy connection team aims to educate patients with leadership potential in wide geographical distribution and the fellows from participating headache centers.

Advocacy Training Program

Throughout the program, there are monthly meetings and discussions on various topics in advocacy. The hope is to increase the number of providers and patient advocates. Advocates receive training about the current state of advocacy for headache medicine and patients and will develop creative strategies to identify and address gaps in the current advocacy movement. Through the sessions, participants are trained in speaking, writing, and political skills to effectively communicate their message while developing project-based outcomes. Advocates have the power of knowledge, communication, and resources to take on the role of migraine advocacy.

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Migraine and Headache Disorder Advocates

As someone who lives with Chronic Migraine and persistent daily headaches, it is tough for me to “keep my head above water.” I struggle to balance my family life, work life, and Migraine Life. Because of this, I struggle to commit to events and programs. Life has taught me that my migraine beast will arise at any moment, and my plans don’t fit its schedule. It’s hard to admit that I can’t make all commitments, and I either apologize a lot or hold myself back from opportunities.

Roughly 39 million people in the United States and 1 billion worldwide have migraines. This makes Migraine the third most common illness in the world.1

No one understands this struggle like Miles for Migraine. Miles for Migraine employ those who live with migraine and headache disorders and those who have significantly seen the impact on the incredible people fighting it each day. To accommodate, the ACT Now advocacy training program is recorded for those who can not attend the virtual live events. Additionally, because it is virtual, you can participate alone at home in the dark, in bed, and with the accommodations that make you the most comfortable.

ACT Now Registration

Even as someone who works on the program, I have had sessions lying in bed under my green light and in my PJs. I found that the days I wasn’t my best, I attended a session and was inspired. Knowing I’m fighting for my cause, and when I can’t, all these advocates are is good. There’s something so powerful about feeling helpless with your condition and sitting in a virtual room with fellows, patients, and caregivers understanding and making a difference for you.

That’s what I have found so influential in my migraine advocacy. I fight stigma for myself every day, but I’m doing it for millions of others. I’m so proud to be building a program that trains migraine advocates to speak for themselves and loudly for our community. If you or someone you love lives with Migraine or headache disorders or is interested in changing the overly stigmatized world of Migraine, I encourage you to make advocacy part of your life. Please register to be considered or reach out to me with any questions. We seek motivated advocates with leadership skills to step up their advocacy game.

Registration for ACT Now Program

Other programs Miles offers:

Social Series– Gardening

Mindfulness Series

Walk/Run/Relax Events

Cleveland

Patient Perspective Speech

2021

2020

2019

2018

Cincinnati

2020

2019

2018

Phoenix

2019