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Miles for Migraine Raises Awareness, Research Funding

Miles for Migraine logoThrough Headache on the Hill, patients and healthcare providers lobby members of Congress each year to increase NIH funding for research into headache disorders. The first year, participants were told that they would have to raise “big noise” in their own communities to see a change. This is something people who advocate for more research funding hear often: lawmakers must believe that the people they represent care about migraine and other headache disorders. That is, we won’t get research funding until we raise awareness about the impact these illnesses on people’s lives.

Miles for Migraine Raises Awareness, Research Funding

In 2008, Eileen Jones decided to make big noise by founding Miles for Migraine. After attending the first Headache on the Hill in 2007, Eileen, a nurse who has migraine, founded Miles for Migraine to raise both funds for and awareness about migraine. Since the first race in San Francisco, Miles for Migraine has raised $79,000 for migraine research and advocacy. Their goal is to fund 30+ fellowships to train new doctors to become headache specialists. Prior funding recipients include:

Race Locations

That $79,000 is just the start. Last year, the race expanded to Philadelphia; this year, a race has been added in Chicago. Depending on the city, races range from one-mile walks to a full marathon. If you’re unable to participate in or attend a race, you can still get involved through Miles for Migraine’s virtual race.

Virtual Race

When Miles for Migraine comes up, people inevitably say that exercise is a migraine trigger, they’re too sick to exercise, or migraine makes their lives so unpredictable that they’re unlikely to be able to attend an organized event. I get this—all have been true for me at different times in my migraine life—and the people at Miles for Migraine get it, too. That’s where the virtual race comes in. You can recruit others to run for you, collect donations for a run/walk you do on your own (a short trip on the treadmill counts!), or you can fundraise without running at all. All those options raise both awareness of migraine’s impact on people’s lives and money for research and advocacy. Donations of at least $100 will get you a T-shirt and race goody bag. See Miles for Migraine’s virtual race on Crowdrise for more information.

2016 Miles for Migraine Races

  • San Francisco on Sunday, July 31: San Francisco Marathon (Mission Street & The Embarcadero); 5K Walk/Run, Half Marathon, Full Marathon
  • Chicago on Monday, September 5 (Labor Day): Naperville Last Fling (440 W. Aurora Avenue, Naperville, IL 60540); 1 Mile Run, 5K Run
  • Philadelphia on Saturday, October 8: Valley Green/Fairmount Park (120 W. North Western Avenue, Philadelphia, PA 19118); 2 Mile Walk, 5K Run, 10k Run

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Migraine Stories: 14-Year-Old Raises $12,110 for Migraine Research

Daisy Griffin, a 14-year-old who has chronic migraine, raised $12,110 for migraine research by sailing alone across the Long Island Sound. She will donate 100% of the money raised to the Migraine Research Foundation.

Daisy’s Migraine Story

Daisy has had severedaisy_griffin_sail migraine attacks since she was four, which have progressed to chronic. Like so many of us, she has tried a slew of treatments, from medications to supplements to yoga to biofeedback. She’s had two in-patient hospital stays to treat migraine. Thanks to a couple preventive medications, she’s feeling better now, but still has a headache every day and migraine attacks at least a few days a week.

When I asked what she wished people understood about migraine, she said, “I really wish that people would get that I’m not just having a headache. I have a headache all the time and a few times a week it becomes a severe migraine. A lot of times people tell me how lucky I am that I miss school all the time. I actually feel lucky when I can make it to school, or even when I can get out of bed.”

Sailing for Migraine Research

Daisy has been sailing avidly since she was eight years old. It’s one of her great passions and she fears chronic migraine could force her to give up. Since she’s been feeling better, she sees this sailing trip across the sound as “sort of like me saying: Take that migraines! I can still do what I love!”

Daisy sailed an 18-foot spinnaker, the largest boat she’s ever sailed by herself. The sailing itself was much easier than she expected because the wind wasn’t very strong. But little wind also made for, in Daisy’s words, a “loooong” trip.

Having chronic migraine meant that Daisy’s trip could have be derailed by the ever-present threat of another attack. She was hopeful that even if she had a migraine attack, sailing would distract and relax her, as it usually does. To prepare, she made sure she got enough sleep and drank a lot of water before the trip. It worked! Daisy’s head hurt a bit, but she didn’t have a migraine attack. (Her father trailed at in a motorboat, so she could radio him for help if she had an attack. But she didn’t need to.)

Fundraising

In addition to the sailing trip, Daisy has raised awareness and donations through a booth at local fair (where she hosted a migraine trivia game) and a lemonade stand with her siblings and cousins. She wrote to groups and individuals to solicit donations and publicize her trip. A generous donor agreed to double the amount that she raised, which brought the total to $12,110.

You can still donate to Daisy’s campaign and the Migraine Research Foundation through CrowdRise.

Way to Go, Daisy!

I’ve never met Daisy, but I’m tearing up as I write about her accomplishments. Much of her young life has been dominated by migraine. Instead of trying to forget about migraine as soon as she felt better (as most of us would have done whether 14 or 57), she threw her newfound energy into raising awareness and funding for research. Her efforts took remarkable dedication and resourcefulness. It’s an impressive feat at any age.

Learn more about Daisy and her trip on her website, Sail for Migraine Research.

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Giving Tuesday: Please Support the 36 Million Migraine Campaign

For Giving Tuesday, please consider donating to the 36 Million Migraine campaign — even $1 donations are extremely valuable. The campaign is to raise money for research, of course, but it’s also about showing lawmakers how many people are affected by migraine. The more people who donate, the more apparent it is that the allocation of research dollars impacts real people whose lives have been altered by migraine.

You can make your donation here. Donations can be designated in honor of a mentor or loved one. You can also donate using American Express reward points. And, if you work for a company that matches donations, you might be able to double your donation. All the details are available on the 36 Million Migraine donation page.

(By making a donation, you will be signed up for a weekly educational email from the American Headache Society. That was a bonus for me, but you can easily unsubscribe if you don’t want to receive it. They’ve never sent me requests for additional donations.)

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It’s Up to Us to Find a Cure: Please Donate to the 36 Million Migraine Campaign

  • Migraine is the third most common disorder on the planet.
  • It is the seventh highest cause of of disability globally.
  • It is by far the most disabling neurological condition.
  • 36 million Americans have migraine. Most have three or fewer attacks each month, but 3% have chronic migraine.
  • Migraine costs the United States more than $20 billion each year in direct medical expenses and indirect expenses, like missed work and lost productivity.
  • Less than 1/20th of 1% of the budget of the National Institutes of Health – about $16 million a year – is allocated to migraine research. $260 million would more accurately reflect the prevalence and magnitude of migraine.

If each of the 36 million people who have migraine donated just $1 each to migraine research, researchers could make enormous strides toward understanding and treating this disabling disorder. Imagine how much we could raise if all the people who love us also donated a $1. It’s not fair that we have to fund migraine research in addition to living with the burden of it, but if we don’t fund the search for a cure, no one will.

Please donate what you can to support the 36 Million Migraine campaign. Maybe you do so as a birthday gift to me as a thank you for how The Daily Headache has helped you, maybe it’s in honor of a loved one who triumphs over migraine every day, maybe it’s so your children or nieces and nephews won’t have a life devastated by migraine, maybe it’s for your own sake. Whatever the reason, please donate what you can to help find a cure for migraine.

Want to learn more? Visit the 36 Million Migraine website or read this informative brochure (PDF). That’s where the list of facts at the beginning of this post is from.

Thank you to everyone who has already donated through Crowdrise!

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Donate to the 36 Million Migraine Campaign to Wish Me a Happy Birthday!

Many of you have expressed a desire to buy me a cup of coffee as a thank you for my work on The Daily Headache. My 37th birthday is coming up and there’s no greater gift I could receive than for The Daily Headache’s readers to further migraine research by donating to the American Migraine Foundation’s 36 Million Migraine campaign.

Whether you can only spare the couple dollars you’d spend on a cup of coffee or your budget will allow for a larger donation, every contribution helps further migraine research. That’s the gist of the campaign — if each of the 36 million Americans who have migraine donated just $1, we’d have $36 million to investigate the causes of and treatment for this life-altering disorder.

36 Million Migraine via The Daily Headache

Of course, not all 36 million migraineurs read The Daily Headache, so I’ve set my birthday fundraising goal at a modest $1,000. Please consider donating whatever you can spare to better the lives of everyone who lives with this poorly understood, debilitating illness.

I’ve set up a 36 Million Migraine via The Daily Headache donation page on Crowdrise so we can see how much The Daily Headache readers contribute toward the goal. If Crowdrise’s $10 minimum donation isn’t in your budget, you can donate through the American Migraine Foundation. I’m using my birthday to drum up support, but it doesn’t matter where you donate or if you mention The Daily Headache or me — it’s all about raising money for migraine research.

P.S. Click on the orange “Optional Processing Fee” text on the Crowdrise donation page if you do not wish to pay an additional amount for processing (or if you wish to pay more in support of Crowdrise!).