I was first diagnosed with chronic migraine during my two pregnancies. For years I was having daily migraine attacks and the little break from pain I did have I spent in postdrome or prodrome. (Read my full story here.) Despite my supportive family, I felt lonely and truly thought I was the only one struggling with this debilitating illness. Discovering the Migraine Strong community on Facebook opened a whole new world up to me. I learned about the migraine disease and how to take control of it. I met other beautiful and strong people who are going through life dealing with the burdens of migraine. All of a sudden, the world became a little less lonely and living with migraine became a lot more hopeful. I learned how to thrive instead of just surviving.
Through Migraine Strong, I also learned about numerous organizations that work tirelessly to raise migraine awareness, raise money for migraine research, and provide migraine education. The top three organizations that Migraine Strong finds the most helpful are:
- American Migraine Foundation (AMF) – non-profit organization dedicated to the advancement of research and awareness surrounding migraine. Migraine Strong is impressed with their work and honored to be partners with them. You can follow AMF on their Facebook page and Instagram.
- Migraine World Summit (MWS) – The MWS puts out a free annual virtual event where it interviews migraine experts, doctors and specialists from around the world about migraine. The event is live in March or April each year but you can purchase a pass here to view the Summit at any time. Being that there is less than one certified headache specialist for every 85,000 patients in the U.S., this is a truly a must see event.
- VEDA – non-profit organization with a mission to support and empower vestibular patients on their journey back to balance. If you have vestibular migraine, you may want to spend some time on this website, as well as on their other social media accounts.
Are you new to the migraine world? Here’s a list of resources, our Migraine Strong member, Movement with Migraine recommends, to learn more about migraine.
World Federation of Neurology
Today I would like to share with you an organization that I recently learned about that deserves some recognition – World Federation of Neurology (WFN). WFN was established on July 22, 1957 and launched the World Brain Day in 2014. The World Brain Day dedicates its focus to a different topic each year. The main objective of this day is to increase public awareness and promote advocacy related to brain health.
The first World Brain Day took place in 2014 and the following year it focused on Epilepsy. The third World Brain Day in 2016 had a theme, “Brain Health and the Ageing Population” and focused on diseases such as stroke, dementia, and Parkinson’s disease. In 2017, the World Brain Day’s focus turned to stroke. The topic for the World Brain Day in 2018 was “Clean Air For Brain Health” to raise awareness on the influence of air pollution on neurological diseases.
5th Annual World Brain Day
This year, WFN is partnering with the International Headache Society (IHS) to support the 5th Annual World Brain Day. They are dedicating the topic to raising awareness for the most common brain disease in the world – migraine.
The key messages being addressed at this year’s World Brain Day are as follows:
- Migraine is the most common brain disease in the world, affecting 1 in 7 people worldwide.
- Migraine is a major, disabling disease that can severely impact every aspect of your life.
- Together, we can ensure those affected by migraine receive the care they need.
- Migraine is under-recognized, under-diagnosed and under-treated.
- Migraine receives less research funding than any of the world’s most burdensome diseases.
WFN is working really hard to promote the World Brain Day to make sure to reach a wide audience. In June, during the Migraine and Headache Awareness Month, the World Brain Day was promoted alongside the American Migraine Foundation (AMF) in an ad displayed in New York’s Times Square.
The Painful Truth
The theme of this year’s event is “The Painful Truth About Migraine.” This year, World Brain Day is taking to social media to ask people around the world to share their Painful Truth about migraine using the hashtags #worldbrainday and #thepainfultruth. Migraine Strong asked our members how they would respond to this question and has been sharing their thoughtful quotes on social media. Bringing these quotes into the public eye makes this horrifying neurological disease and its suffering less invisible. We would love to read your painful truth about migraine in the comments below.
We encourage everyone to register and attend the World Brain Day webinar which takes place on July 22, 2019 at 10:00 a.m. EST and join the panelists for a discussion about migraine.
The panelists include as follows:
- Prof. William M Carroll, President, World Federation of Neurology (WFN)
- Audrey Craven, President, Migraine Association of Ireland (MAI)
- Prof. David Dodick, Immediate Past-President, International Headache Society (IHS), Chair of IHS-GPAC
- Prof. Dr. Wolfgang Grisold, WFN Secretary-General
- Elaine C Jones MD, Director, American Academy of Neurology (AAN)
- Prof. Tissa Wijeratne, Chair WFN Public Awareness & Advocacy Committee
Part of managing our migraine disease is education. We need to educate ourselves about our disease to be able to advocate for ourselves and others in our migraine community. By educating ourselves we can take control of migraine and spread migraine awareness. World Brain Day is the type of the event where we can maximize education. And if education is not incentive enough to register, we will be having a giveaway next week. Keep your eyes open for our announcement!