Move over, Ice Bucket Challenge: We want to bring some attention to migraine!
As a longtime patient advocate, I applaud folks who are able to bring a lot of attention to those who deal with particular illnesses/conditions that mean a lot to them. That is to say, if someone in your family has suffered from Alzheimer’s, I think it’s great that you raise funds in hopes of finding a cure. If you have a friend who died young from a rare disease, I wish you all the luck in the world as you bring attention to the need for more research to that disease. And for those of you who believe that ALS (Lou Gehrig’s Disease) needs more intensive research and funding, HECK YES with those sometimes heartfelt, sometimes funny (and oftentimes both) “Ice Bucket Challenge” videos.
I must admit, something, though: I feel a twinge of frustration when I think about the Ice Bucket Challenge. Every time a health condition is getting a lot of continual news coverage and a corresponding boost in fundraising efforts (breast cancer, and now ALS, ’m looking at you), I can’t help but think about migraine disease, the illness I deal with every single day.
First, a little background. Here’s what I found out about ALS on the ALS Association website.
The prevalence of ALS is said to be between six and eight cases per 100,000 population. Using the higher prevalence estimate and data from the 2000 U.S. census, nearly 22,600 Americans are living with ALS at any one time. Since ALS is a disease of aging, as the U.S. population increases and ages, an increase in the prevalence of ALS can be anticipated.
Here’s what I found on migraine.com regarding migraine:
There are about 100 million people with headaches in the U.S.; about 37 million of these people have migraines. The World Health Organization suggests that 18 percent of women and 7 percent of men in the U.S. suffer from migraines.
Okay. Here’s the deal. I KNOW that ALS is an awful disease, and the idea that tens of thousands of Americans are dealing with this diagnosis every day is just heart-wrenching.
You know what’s just as heart-wrenching to me, though, and on a much more personal level? The comparative lack of funding dedicated by the NIH (National Institutes of Health) to migraine disease, a debilitating and life-stealing condition that affects every person reading this piece right now. Pair that with the lack of public awareness and general recognition of migraine as a legitimately disabling condition, and you have the recipe for a continued lack of attention and money toward researching something that affects as many as THIRTY-SEVEN MILLION AMERICANS.
Comparing ALS to migraine is worse than comparing apples to oranges—there’s really no fruitful (pun intended) way to compare the illnesses and their respective attention and funding despite my introduction above. They are, to be overly cliché, horses of a different color.
What I would like to do with this post is to see what ideas YOU have that might be able to get more funding for migraine research. Goodness knows most of us migraineurs cringe at the thought of pouring a bucket of ice on our heads (just the mere thought of the noise the ice makes in its bucket as it shifts around is enough for me to cover my sensitive ears, let alone the cold ice on my head and rapid shift in temperature!). Some well-meaning migraine healthcare providers in West Virginia introduced the Hot Wings for Headache Challenge in August, but a lot of you migraine.com members were less than thrilled with that idea.
So what sort of “challenge” could we create to bring more attention to migraine? What sort of campaign do you envision to get hundreds (if not hundreds of millions) of people to learn more about migraine disease and its effects on our families, our productivity, and our quality of life? What sort of social media campaign, in your wildest dreams, would you create to help raise attention and funds for migraine research?
Have you taken our Migraine In America Survey yet?