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 is 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 team. But, I will admit that I haven’t done much connection with fellows or doctors when it comes to building awareness. I have learned so much personally and continue to be 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. VeryWellHealth
ACT Now Fellows and Advocacy Training Program
The program is created by the Executive Director, Shirley Kessel, and Doctor Bill Young. The program includes monthly virtual meetings that educate and discuss various topics on advocacy and the field of migraine and headache disorders. The purpose of these meetings is to 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 lobbying to congress together and 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 hearing from both the patient/caregiver and doctor 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 knowledge and inspiration gained from the ACT Now program.
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 (yes, the year of the pandemic), Miles for Migraine awarded $592,984.94 to those headache fellowship programs.
With the severe shortage of headache specialists in our country, 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 in order 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 the future of their patients and their 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-person without headache
- Provider and patient to payor
Because of this high need and low advocate numbers, the ACT Now fellow and advocacy program builds on all of these relationships. The advocacy connection team aims to educate patients with leadership potential in a wide geographical distribution along with 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 training in speaking, writing, and political skills so that they can effectively community their message while developing project-based outcomes. Advocates have the power of knowledge, communicate, and resources to take on the role of migraine advocacy.
Migraine and Headache Disorder Advocates
As someone who lives with Chronic Migraine and daily persistent headaches, it is very hard for me to “keep my head above water.” I struggle to balance my family life, my work life, and My 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 for me to admit that I can’t make all commitments and I find that I either apologize a lot or hold myself back from opportunities.
Roughly 39 million people in the United States and 1 billion people worldwide have migraine. This makes migraine the third most common illness in the world.1
No one understands this struggle like Miles for Migraine. Miles for Migraine employs both those who live with migraine and headache disorders and those who have greatly seen the impact on the incredible people that fight it each day. In order 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 along 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. It feels good knowing I’m fighting for my cause and when I can’t all these advocates are. There’s something so powerful about feeling helpless with your own 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 powerful in my migraine advocacy. Every day, I fight stigma for myself but I’m also doing it for the 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, 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 are looking for motivated advocates with leadership skills looking to step up their advocacy game.
- Migraine Facts. Migraine Research Foundation. Available at https://migraineresearchfoundation.org/about-migraine/migraine-facts. Accessed 2/26/2021.