Hello CMA friends! My name is Beth. I joined the CMA team about a year and a half ago when they started a series of short surveys. I’ll admit that after the first one, I couldn’t help myself from reaching out with some feedback on ways to improve it. I ended up signing on to help them with the rest.
You see, my professional training is in the social sciences. Specifically, research and evaluation in schools. A survey that can be improved is my kryptonite. Well, that and chronic migraine. Because in 2015, my migraine attacks – which had been episodic for almost 20 years – became chronic over a span of a few months. I was in graduate school and working, and a perfect storm of stressful events disrupted everything and led to a cascade of triggers, then more and more attacks.
Despite great headache care, self-advocacy, and trying almost every treatment available to me, my migraine pattern hasn’t changed. In part, this fuels my advocacy. We have had many new treatments in the last few years, but that’s still not helped all of us. I advocate because I know patients like me, with daily symptoms and comorbidities, are often left out of clinical trials making it harder to find safe and effective treatments.
I also advocate for high quality research to be more accessible to everyone. Understanding this research takes skills I spent years learning in school. I can no longer work full time, so a goal of my advocacy is finding ways to make reliable, research-backed information accessible to more people so they can use it to inform their own treatment decisions and cut through the noise (e.g., bad information on migraine).
When you are first diagnosed or your attacks worsen, it might be a scary, anxious time, so my hope is that making information accessible helps empower people, alleviate worry, and get people on track to better treatments. Organizations like CMA are so central to this work and I’m happy to be a part of the team.