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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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Your Five Minutes Could Increase NIH Funding for Headache Research

Urge your US House of Representatives member to support increasing the National Institutes of Health’s headache research funding by sending this pre-written e-mail no later than Monday, March 17. That’s all that’s required, though you are encouraged to include a personal note on how headache disorders affect you.

According to the National Headache Foundation, “NIH grants for migraine total approximately $13M per year, representing less than .05% of the total NIH budget. Very little headache research apart from migraine is funded and the NIH has no institute, center, or study section wholly devoted to pain, let alone headache disorders.”

This letter from the Alliance for Headache Disorders Advocacy has details on the initiative:

AHDA Congressional Action Alert: Increase NIH funding for Headache Research

Dear AHDA advocates –

Well, the key moment has arrived for you to contact your Member of the US House of Representatives to take action for increasing NIH research for headache disorders.

A Dear Colleague letter was sent Monday, March 10, by Representatives Peter Welch and James Moran to all House offices, urging all Members of the House to co-sign a letter to Representatives David Obey and James Walsh. The Obey/Walsh letter requests inclusion of language that supports headache research to be appended to the FY09 appropriations bill for NIH. (For details, see the AHDA homepage.)

The more Representatives that co-sign the Obey/Walsh letter, the greater are the chances that the language will be included. The Obey/Walsh letter must be submitted with signatures by 3/19. This unfortunate deadline was a late-breaking surprise for us, so we have little more than a week to get as many signatures as possible. Please use the space below to compose your message to your Representative and urge her/him to co-sign the Obey/Walsh letter now.

We are also working on a Senate Dear Colleague letter right now and we will let you know when the time is right for you to contact your Senators too.

Through collective advocacy we will improve the care for individuals with headache disorders. Thanks very much for your help.

Best regards to you all,

Bob

Robert Shapiro, MD, PhD; Burlington, Vermont
William Young, MD; Philadelphia, Pennsylvania
Brad Klein, MD, MBA; Philadelphia, Pennsylvania
Teri Robert, PhD; Washington, West Virginia

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Advocates for Pain Care Funding

“There are about six times more Americans living with chronic pain than with all kinds of cancer. The NIH [National Institutes of Health] has its own Cancer Institute, which received $4.8 billion in 2005, or about 20 times more than the $229 million that went to pain research.”

This information comes from Advocates Demand Funding for Pain Care. Yes, cancer is life-threatening and pain is not (in the traditional sense), but that’s a huge disparity and way too many people are suffering from it.

Proposed legislation to increase the NIH’s pain research funding and to create six pain research centers around the country has the American Medical Association’s backing, but it the bill has faded into the background. Under the direction of the American Pain Foundation, pain patients are stirring up new interest in Congress by telling their stories.