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On July 22, 2019, the World Federation of Neurology and International Headache Society joined forces to celebrate the most unprecedented World Brain Day. Each year, the World Brain Day focuses on a different theme. This was the first time, it was dedicated to migraine in an effort to raising migraine awareness. The panelists during the webinar did an impeccable job sharing the painful truth about migraine with the world.
The key messages during the webinar covered the topics of research, disability, prevalence and education. It was heartbreaking to hear that migraine is the most common brain disease in the world, affecting 1 in 7 people worldwide. It is a major, disabling disease that can severely impact every aspect of your life. Notwithstanding, migraine receives less research funding than any of the world’s most burdensome diseases. This is important because under funding significantly hampers the progress in the field of migraine treatment. In fact, there’s a correlation between the amount of money spent and number of people engaged in research and the speed of progress.
The webinar underlined that migraine is under-recognized, under-diagnosed, and under-treated. Unfortunately, patients are often not aware that effective diagnosis and treatment are available.
It was exciting to hear Professor Wolfgang Grisold discuss the importance of self advocacy in finding the best treatment and diagnosis. We also discuss the topic of self advocacy in our blog, How To Be A Migraine Advocate.
Here are 3 main takeaways from the World Brain Day webinar we wanted to share with:
1. International Registry for Migraine Research
The American Migraine Foundation launched the American Registry for Migraine Research (ARMR), which is a massive database containing information about patients diagnosed with migraine and other types of headaches. ARMR is a valuable tool to advance research by helping physicians and researchers around the world understand the causes, characteristics, costs and treatment of migraine and other types of headaches. ARMR data are expected to lead to improved treatments of migraine and other headaches. How will it affect you? Well hopefully it will help identify factors that will predict the future of an individual patient’s headache disorder as well as identify the treatment that is right for them.
ARMR’s goal is to collect data from patients and create a large-scale migraine and headache registry. This registry will be used to help researchers and physicians better understand migraine and the causes, improve diagnosis, and lead to better treatment.
As part of ARMR, a wide range of data is collected about headache patients, including:
Information about age, gender, employment, education and other demographic information
- Symptoms, headache type and headache characteristics;
- Impact of headache on your quality of life and functioning;
- Severity and frequency of attacks;
- Personal medical history, family medical history, and other medical information;
- Blood samples from each patient are collected then stored at the Mayo Clinic Biobank. These samples may be used for future studies.
Where patients are being enrolled
ARMR is currently available to participants living in the United States only. ARMR is currently enrolling patients at:
- Mayo Clinic – Phoenix, Arizona
- Univeristy of Texas health Science Center at Houston – Houston, TX
- Dartmouth-Hitchcock Medical Center -Lebanon, NH
- University of Colorado – Denver, CO
- Thomas Jefferson University Headache Center – Philadelphia, PA
- Georgetown University Medical Center – Washington, DC
- DENT – Buffalo, NY
- University of UTAH – Salt Lake City, UT
- Yale University – New Haven, CT
2. Global Patient Advocacy Coalition (GPAC)
In 2017, the International Headache Society set up the Global Patient Advocacy Coalition. This is a cross-functional group of patient advocates, doctors, specialists, industry stakeholders, patient organizations, and groups like the American Migraine Foundation, World Health Organization, the World Federation of Neurology and The Migraine World Summit.
It’s still a very new group with goals to raise migraine awareness, increase funding for research, implement standards of care, and reduce the global burden of the disease.
3. Never Lose Hope
“Hope is a choice. Hope can be learned. Hope is contagious. Hope can change your life.”~ Shane J. Lopez, Ph.D.
Hope is a very important waypoint during the healing journey. It gives us motivation to move forward. There are studies suggesting there is a close relationship between optimism and hope and a reduction in the effects of chronic disease.
All the speakers exuded hope during their talks. “Never lose hope” said Tissa Wijerante, MD the World Brain Day Chair. “There’s never been a time to be more hopeful,” said Professor David Dodick, an Immediate Past-President of IHS, Neurologist and Professor of Neurology at the Mayo clinic in Arizona.
Dr. Dodick is absolutely right. With the new programs being established, the advocacy efforts being made by the amazing organizations, the build up of migraine awareness momentum and the new medications which are underway, there is so much hope.
In our Migraine Strong Facebook group, we have seen so many stories of hope. Three of the admins of the group, including myself, shared our stories on this blog which show that if anyone is proof that there’s hope, it’s us: Jennifer’s story, Alicia’s story, and my story. We see our members make progress every day and they fill themselves with hope and positivity and share it with each other. We urge you to keep fighting and keep your hope alive.
You can watch the full World Brain Day 2019 webinar HERE.
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