As origin stories go, Miles for Migraine may have one of my absolute favorites. Theirs began during Headache on the Hill, a yearly advocacy event where members from different organizations and individuals come together to lobby congress on issues of importance to the migraine community.
In 2007, Eileen Jones, a registered nurse, was told that Congress didn’t have the means to allocate more funding at the National Institute of Health (NIH) for migraine research, and furthermore, much more education was needed to get the issue out in the public eye. Jones, a resident of San Francisco, took matters into her own hands. She decided to start a race to raise funds while educating the public about migraine and thus Miles for Migraine was born.
Growing from one location, including forty participants the first year, the event quickly doubled its size by the second year. In addition to a continuation of growth that exceeded all expectations, this past year Miles for Migraine branched out to more than twelve different locations for races. Locations such as Phoenix and Boston were accompanied by a wealth of programing designed to reach all types of migraine patients and allow them to participate regardless of limitations.
I had the opportunity to speak with Shirley Kessel, the Executive Director of Miles for Migraine. She relayed the 2019 slogan “Education + Participation = A Migraine Free Nation” while giving me some background on how she got involved in migraine advocacy.
Shirley is a migraine sufferer herself and her teenage daughter also suffers horribly from new daily persistent headache (NDPH) which in itself is a misnomer and a disease that greatly resembles chronic migraine. “NDPH is treated like the headache it most resembles, generally chronic migraine or chronic tension-type headache”. Her daughter’s story resonated deeply with me: dark, soundless room, for months on end, with no relief in sight. Frustration was compounded when it came time to visit what was probably one in a list of countless doctors, and her daughter was prescribed the same medication that Shirley had been prescribed many years before.
How was it possible that nothing had changed? No new advances? Her daughter had to miss out on the touchstone moments in a teenager’s life that so many take for granted.
So Shirley got involved, and Miles for Migraine grew.
I think many of us can relate to that feeling of helplessness. In fact, I personally have. Just last year when I found out about Miles for Migraine, I was in the middle of a six-month intractable migraine, and there was no way I was going to be able to get to San Francisco for the race. I was bummed, because I wanted to participate and be part of the community. Luckily my friend, who happens to be Our Chronic Migraine’s fearless Editor-in-Chief, alerted me to the virtual race. I logged my mileage in doctors offices and the occasional trip around the block.
Virtual races are easy to do. You can create a team, as some areas without in-person races do, (or as My Chronic Brain has https://chrnbrn.com/Miles4) or do it solo. All you have to do is sign-up on the Miles for Migraine website and you are on your way. Any money you raise from fundraising will go directly to funding fellowship and research at a number of programs across the country. And the beauty of the virtual race is how many steps you do and how you break it up is completely up to you. You can eek it out over time on your good days or pick an afternoon and lace up your running shoes and hit the pavement.
That’s a large part of the Miles for Migraine’s mission: creating events and programming that help to build a sense of community for the community-less.
So what can you do to get involved in 2019?
You can sign up to walk or run in one of the races that are held in 18 different locations around the country, or you can put together a team and participate virtually all while raising funds vital to funding migraine research (to see where past funding has gone visit MilesforMigraine.org).
Attend an educational event. These events serve a dual purpose, with an educational component and a social one as well. In the morning there are lectures from prominent speakers in the migraine field and in the afternoon there is a chance to network, meet other patients and participate in more informal break-out groups. Attendees can sign up for different activities–as art therapy and different kinds of meditation are just a few examples.
Whichever way you choose to get involved, it’s important to just get out there! After all, if we want to work towards a migraine-free nation, we have to continue to educate and take every opportunity to educate others, and participate whenever our bodies and minds will allow us.
Participation begins one step at a time.
A government affairs professional who is currently learning to focus on her health, Jenn is a former half-marathon walker with an adorable Yorkie, Gracie. She spends her time advocating for change, encouraging other chronic illness sufferers, and crafting! Find her online at medicallyodd.com or with her social media handle @Medical_Oddity!