Recapping 2021 and Welcoming the New Year
It is hard to believe another year has come and gone. Every year when we write this update we are in awe of how much progress has been made in the migraine community. Stick with us as we shine light on some of our proudest moments of 2021.
A Growing Team….
The workload kept growing so the team needed to, too! This year we were fortunate to add two new key team members, Kylie Petrarca, RN and Heba Bani Hani, RPH. Kylie is a Registered Nurse who has joined the team to help grow our patient education programs. She has played a critical role in the development of our Comorbidities Library and our Patient Education video series, both of which will begin to be released in early 2022. Kylie was diagnosed with migraine while serving as an ICU nurse on the frontlines of the COVID-19 pandemic.
Heba is no stranger to the migraine community! She is a Canada-based, registered pharmacist with significant experience working for pharmaceutical companies. More recently, Heba founded The Migraine Pharmacist and she is also the Senior Program Manager for The Migraine Pharmacy. Heba joined AMD as the Program Director for the Migraine Science Collaborative. In that role Heba spearheads content development and member engagement for our audience of medical professionals and researchers.
Both Heba and Kylie are passionate about improving patient care, providing accurate and practical disease education and working to decrease the burden of migraine.
As you may know, our mission is to expand the understanding of migraine disease through education, awareness and research.
Here are our accomplishments in those areas:
Over the past year, we have continued to be a trusted source for patient education. While migraine has always been our area of expertise, we are pleased to share that we have been expanding our educational content to other headache diseases. We’ve stayed true to our goal of expanding the understanding of migraine by covering topics beyond traditional views. We have also continued to explore migraine as full-body disease by discussing migraine’s link to numerous other comorbidities and symptoms.
Migraine Resource Kit for Healthcare Professionals
This year we launched a new program to help healthcare providers that are not headache specialists give better care to their migraine patients. The Migraine Resource Kit is an extension of our well-received continuing medical education course, A Migraine Toolbox. The kit is filled with free, printed resources intended to be used by primary care and specialty care providers, including dosage cards, treatment comparison guides, an anatomical poster, and patient brochures.
We developed a partnership with the Indian Health Services to distribute these kits to providers who serve Native American patients, the group who has the highest incidence of migraine. With their help, we have given out hundreds of resources. Additionally, we were able to get back to traveling this year. We attended numerous healthcare conferences where we were able to promote this program to physicians, physician assistants, nurse practitioners and other healthcare providers. To date, we’ve distributed more than 15,000 Patient Brochures, 500 dosage cards, 200 treatment guides, and 125 Posters to more than 70 clinics all free of charge.
Spotlight on Migraine
Over the last 12 months we published a whopping 35 podcast episodes (our most ever!) and 15 blogs by patient authors.
Top 5 Podcasts
- What People with Migraine Should Know About the Covid-19 Vaccine
- What is Craniosacral Therapy?
- Migraine Symptoms in the Ear
- Magic Mushrooms? What You Need to Know About Psychedelics for Migraine
- An Overview of Research on Dietary Patterns for Migraine Prevention
Top 5 Blogs
- What is New Daily Persistent Headache?
- Migraine Treatment Developments On the Horizon in 2021
- The Link Between Migraine and Fibromyalgia
- Migraine and Covid-19: What We Know So Far
- To Exercise or Not to Exercise? The Migraine Paradox
The Migraine Symposium
The lingering pandemic forced us to one again hold our annual Migraine Symposium in a virtual format. Our 2021 symposium was our largest yet with more than 40 speakers, catering to both medical professional and patient audiences! After two years of going virtual, we realized there is a tremendous need to get these educational lectures out to people around the world. Therefore, we are thrilled to share that our 2022 symposium will be hybrid, offering unique in-person experiences for those local to New England and a convenient learning opportunity for those who can’t join us in person. The 2022 event will feature procedure demonstration rooms, panel discussions and many other new additions. If you’d like to be notified when registration opens, sign up for our notification list here.
In November, we held our first live webinar on “A Patient’s Role in Accelerating Research”. We had six guests join us to share their experiences participating in or conducting research. This event turned out to be a big success with a lot of helpful information and insights provided to the highly engaged patient audience.. It’s an education format we plan to continue in the new year.
Migraine Research Initiative
In 2021, AMD put a bigger focus on advancing migraine research. In 2020 we strategized a multi-year plan for our research initiatives which we began implementing in 2021.
AMD’s Research Advisory Committee approved two migraine research projects for funding. The first approved project, Characterization of Migraine Characteristics and Treatment Response Using Semantic Learning, will be led by William Renthal, MD, PhD of Brigham and Womens’ Hospital in Boston, MA. The second project, Understanding the Association Between Sleep Apnea and Migraine will be led by Eric Gruenthal, MD at the Cleveland Clinic in Ohio.
Though this next update technically came to fruition in the first days of the new year, we are proud to share that AMD also had its first paper published. It was written in 2021 and came out of our 2020 Meeting of the Minds event. The paper is called “Care Gaps and Recommendations in Vestibular Migraine: An Expert Panel Summit” and can be found here.
Additionally, AMD made steady progress with our own project, a longitudinal migraine patient registry that will document the natural history of vestibular and midfacial symptoms in people with a history of migraine, track diagnostic markers and report the efficacy of various treatments of migraine-related vestibular and midfacial symptoms. More information on this will be available in 2022.
Migraine Science Collaborative
With the addition of our new program director, Heba Bani Hani came many great advancements for the Migraine Science Collaborative. Heba helped hone in on the program’s four main focuses: professional networking, mentorship opportunities, research support, and educational resources.
The program also launched a LinkedIn page to continue the networking among professionals in migraine science.
The Migraine Science Collaborative also hosted a satellite event for the Society for Neuroscience conference. This event featured a poster contest where 9 contestants shared their work in migraine research for a chance to win cash prizes. It was a fantastic opportunity to shine light on the great work of up and coming researchers and it also opened a discussion for new areas that should be explored.
Shades for Migraine
2021 marked our second year holding the global awareness campaign completely virtually. Luckily, it didn’t impact our ability to raise awareness and the campaign continued to grow exponentially. We made some major new additions to expand the campaign including new spokespeople, Times Square advertisements, national cable TV public service announcements and, of course, our ultra-successful Community Leader Program.
More than 40 volunteers signed up for our Community Leader Program to spread migraine awareness in their cities. With their help, we distributed more than 12,000 sunglasses and thousands of educational brochures and flyers. It turned out to be one of the best ways to spark conversations about the disease. We learned a lot from our first year holding this program and we are thrilled to bring it back in 2022 with new ways of engaging within communities.
Shades for Migraine 2021 will be hard to top in the new year but we are confident with your support we can make it happen.
Hint for our 2022 plan: We hope to hit it out of the park!
Giving Tuesday & The Research is Hope Campaign
For the second year, we held our fundraising campaign called Research Is Hope. This year, we had more information to share on the research we supported with the help of the funds raised from Research Is Hope 2020. With our followers’ help, we raised over $20,000 that will directly support innovative research led by our Research Advisory Committee.
We are still a few thousand away from reaching our 2021 $25,000 campaign goal. It’s not too late to donate! Donations can be made at https://migrainedisorders.org/donate (We also added the option to donate with cryptocurrency this year.)
We spent much of 2021 perfecting our program strategies and the educational resources that will be published in 2022.
We are looking forward to 2022 with the same goal we have each year: to improve the lives of those living with migraine. A lofty goal we know, but we have some exciting ideas we think you will love.
Stay updated on all of our new developments as well as migraine news by signing up to get our monthly newsletter here.
You can help us improve! Please consider taking our end-of-the-year survey (takes less than 5 minutes) so we can learn more about you and your educational preferences.