Stand Out Advocates: ACT Now 2023/2024 Graduates

It’s time to announce our stand-out advocates for the ACT Now 2023/2024 cohort. The Miles for Migraine Advocacy Connection Team (ACT) training program for fellows and patients is a unique initiative that brings together individuals living with migraine and other headache disorders. Healthcare professionals and advocates work collaboratively on advocacy efforts. The program aims to amplify the voices of patients and advocates, increase awareness about migraine, and advocate for initiatives that improve access to care and support for those affected by migraine and headache disorders.

The fellows and patients are selected through an application process and participate in a structured training program designed to enhance their advocacy skills and knowledge. Fellows receive mentorship and support from experienced advocates and healthcare professionals, as well as access to resources and opportunities for networking and collaboration.

By bringing together patients, advocates, and healthcare professionals, the ACT Now program creates a powerful platform for advocacy and community engagement. As these participants graduate Miles for Migraine hopes it transforms their lives and thoughts towards migraine advocacy in the future. 

Congratulations to all of the 2023/2024 graduates. We’d love to highlight some of the advocacy projects that have been accomplished through this program as of May 2024.

Stand Out Advocates: Patients

Congrats to patients Adrienne Gallagher and Michelle Mayer for completing Fundraise Your Way events. Adrienne did a Chipotle fundraiser and Michelle did a Pampered Chef event that raised money for Miles for Migraine and their local headache centers. What a unique way to have fun, eat, and raise money for a good cause! Additionally, both women are impactful at their local walk/run/relax events and volunteering.

Lindsey De Los Santos is a patient advocate who uses her writing skills and voice to raise awareness in the migraine community. Lindsey wrote a beautiful article called “Migraine: Giving Voice to the Invisible.” She is passionate about helping teachers with migraine and is in the process of collaboratively creating graphics and content to help this community

Lauren Bobanski has turned her focus from global maternal and newborn health to the chronic migraine space after living with chronic migraine. She is applying for a grant to address the issue of doctor-patient communications for people with chronic migraine disease. She asked Miles for Migraine to be a part of this project.

D’Sena’ Warren is helping the BIPOC community through social media. D’Sena will be joining Miles for Migraine African American support group and advocating on Facebook. 

Fellows and Patients

Miles for Migraine plans walk/run/relax events across the country. These events take a lot of effort. We would like to send a special thank you to those who joined planning committees that will help make their city even better next year!

• Victor Wang, Samantha McMahon, and Terri Dean-Alexander for Philadelphia
• Samantha Jones for Chicago
• Elizabeth Ottinger for San Francisco
• Eva Wiliams for Winston-Salem
• Lauren Shin– for San Francisco

Guest Speakers:

These are advocates who spoke at a walk/run and shared their experience of living with migraine or headache disease

Sarah Freedman, Lauren Bobanski, Victor Wang, Samantha McMahon, Lindsey Littlehales, Sheena Pillai, Lauren Flannery, Eva Williams, Eyal Maoz, Lindsay Houghton, Nan Cheng, Olivia Kingsford, Samantha Jones, Zack Pardieck, Edmond Ahdoot

Social media and connection warriors:

These are people aiming to spread awareness through in-person and online education.

Ann Whitted, Beccy Lauer, Bernadette Gorczyca, Brittany Schenck, D’Sena’ Warren, Erica Parsons, Jill Sher, Jillian Deneau, Sarah Freedman, Lauren Bobanski, Lindsey Schaefer

Stand Out Advocates: Fellows

Addressing the shortage of migraine fellows and lack of funding requires a multi-faceted approach. This involves advocacy efforts to raise awareness about the importance of migraine research and education, increased investment from government agencies and private organizations, and initiatives to expand fellowship programs and training opportunities in headache medicine.

Miles for Migraine supports fellowship programs across the country through fundraising at walk/run/relax events. Many of these fellows join the ACT Now program to strengthen their knowledge of migraine advocacy, ultimately, enhancing the lives of individuals living with migraine. 

Advocacy Projects from Fellows

Nan Cheng is a fellow at Phoenix Mayo. She helped organize a team and fundraise for Miles for Migraine walk/run/relax in Tempe. Nan spoke, giving her personal story of growing up with migraine and now being a provider. Her group won the largest team and fundraiser awards. Beyond the great work Nan did in Arizona, she collaborated with Phil Maynard to create an easy way to tell patients about migraine organizations and resources.

Phil Maynard made an easy-to-follow DOT phrase that can be used widely to educate patients. This resource provides easy access to organizations, resources, therapies, and app options. Phil plans to distribute this widely so that doctors can give further information beyond medication at appointments. Additionally, Phil has used his voice on social media to talk about the walk/run/relax event in New York with his Mt. Sinai coworkers.

Jennifer Collins from Milwaukee presented “Unwinding the Migraine Journey” in an in-person event about migraine diagnosis and treatment. She educated her virtual and live audience by giving them opportunities for participation and learning.

Another fellow who participated in an in-person event was Ali Tavasoli. Dr. Tavasoli did a presentation on the ACT Now program to parents during a family event in Phoenix. This event was educational, gave support, and provided a chance for children living with migraine to connect with others while parents/caregivers did the same.

Meghan Piccinin spoke at the Cleveland walk/run/relax before being a part of the ACT Now program with a large team from her clinic. To complete the program she wrote an incredibly insightful post on Botox. Her expertise in this will help many.

Kathleen Selick and Andrew Day D.C. collaborated on Letters for Prior Authorization and an easy access guide for patients.

Thank You, Advocates and Graduates

Thank you and congrats to all of the graduates. You all are stand-out advocates. These are just a few examples of the ACTS of advocacy coming from ACT Now. Many are still completing their projects and some will live a life of immeasurable advocacy.

Check out 2022/2023 superstars