Race Against Pain: Cluster Headache Awareness

The 3rd Annual VIRTUAL #CureforCluster 5k for Cluster Headache Research by Clusterbusters is officially renewed for Saturday, June 22nd, 2019! Cluster headaches affect a smaller population than migraines and other common headache disorders, so a virtual 5k allows clusterheads from around the globe to participate and raise awareness for cluster headaches in their hometown.

If you have urgent questions, call or text 303-842-4858.

We feel this is the best way to raise awareness and funding across the country and internationally. Whether it’s just you or a group of people, you simply sign up on our website, and you’ll receive your t-shirt and race bag in the mail a few days before June 22nd!

What’s a Virtual 5k? A virtual 5k can be run or walked at any location so that you can join us from anywhere in the world on Saturday, June 16th. You can use a treadmill at home or in a gym. You can run outside in your neighborhood or at a local park. You can bring your children, use strollers, or participate in a wheelchair. There’s no time limit, so you can run or walk 3.1 miles (5 kilometers) at your own pace. Your pets can even participate with you! One of the benefits of a virtual 5k is that there are no added costs of travel and hotel stays.

How the #CureforCluster Virtual 5k Works:

The first step is to sign up on our #CureforCluster race website. For international runners, the cut off for signing up is June 1st and June 8th for participants in the U.S. because we need ample time to send you your #CureforCluster shirt and swag. Also, rsvp on our #CureforCluster Facebook Event to see who else is participating.  You don’t have to run by yourself. Ask your family, friends, co-workers and fellow clusterheads in your area if they’re interested in doing it with you. This is a great opportunity to share the harsh realities of having cluster headaches with those who may not understand that this brain disorder is devastating and dangerous. After all, the number of suicide attempts in the cluster community is 20 times the national average in the U.S.  You can also ask your friends and family to “sponsor” your run by pledging to donate as little as $1 per mile completed. Once completed, they can donate that amount under your name via the donations page on our #CureforCluster website. (If you’re an avid runner, you don’t have to stop at 3.1 miles! Identify your time zone in relation to Denver, Colorado. The race begins at 8 am MST. So, for example, if you’re running in: Scotland: begin at 2 pm Norway: 8 am Mississippi: 9 am London: 2 pm New York City: 10 am Michigan: 10 am Chicago: 9 am Germany: 3 pm Puerto Rico: 10 am

Emails are sent out on a weekly basis to all participants, and regional emails will be sent on June 11th to check in with where and when you or your group are running or walking.

Why Join Us? This virtual 5k is to raise awareness for cluster headaches, a form of Trigeminal Autonomic Cephalalgia. These are not “headaches,” but attacks of sudden, severe, one-sided attacks that feel like an icepick or hot poker is stabbing your temple and eye areas. These attacks can occur up to 12 times a day, lasting 15 minutes to 3 hours. Nicknamed “Suicide Headaches,” this brain disorder is known to be one of the most painful conditions known to man. The most effective treatment is high=flow oxygen through a non-rebreather mask, but the National Institute of Health has yet to classify oxygen therapy for cluster headaches, leaving many sufferers paying hundreds each month or going without treatment.

Clusterbusters: The proceeds of this race are going toward research funded through Clusterbusters with whom we are affiliated. We urge you to check out the website and learn more about this incredible organization who has helped thousands of cluster headache patients around the world. Current research is being conducted at Yale University for both episodic and chronic patients by Emmanuelle Schindler, MD, Ph.D. on the alternative psychedelic treatments known to alleviate/prevent attacks. Another study which involves the psychological effects of cluster headaches on the lives of patients is on the cusp of completion at the University of West Georgia by Dr. Larry Schor.

Rare Patient Voice: Rare Patient Voice is a one of a kind organization that links patients with unusual (and some common) diseases with surveys and clinical trials relevant to their condition. What sets this group apart from others is that you’re paid for your participation. We’re proud and honored to have Rare Patient Voice as a sponsor again this year and hope you’ll sign up for their mailing list. You’ll only receive emails when the subject matter is relevant to you, and you’ll get an Amazon gift card just for signing up! If you list Clusterbusters as your referring organization, we receive a $5 donation. 

Race Day Details:

On Friday, June 21st at 6 pm MST (Denver), our race director, Ashley Hattle, will go live on Facebook (and send an email to all participants) to promote the race and get all participants pumped up for the 5k. Last minute details will also be discussed.

At 7:45 am (MST) on the day of the race (Saturday, June 22nd), we will go live on Facebook again to signal the start of our 5k. However, if you live in a later time zone, you’re welcome to run your 5k earlier in the morning. We will then go live again once most everyone has finished the 5k at 9 am to congratulate everyone and announce our door prize winners. The prizes, ribbons, and medals will be sent out in the weeks following the race.

Share Your Progress and Participation on Social Media (Facebook, Twitter, Instagram) using the #CureforCluster hashtag: The main goals of our annual virtual event are to spread awareness of cluster headaches and raise funding for research and scholarships for the Clusterbusters conference and Headache on the Hill. By “going live” or taking photos of yourself or your team/regional group of runners wearing your t-shirts, you can help us flood social media with the inspirational images and messages of cluster headache patients. There may be a clusterhead in your area who is struggling without a support system who can benefit from your efforts to raise awareness. You can post on our Facebook event as well to let us know how your run or walk went!

How to Raise Awareness at Other Events

Miles for Migraine and Runnin’ for Research each host several regional events across the United States. You can continue to support headache disorder advocacy and research by participating in one of their many races. Miles for Migraine will donate a set amount for each Clusterbusters member who runs or walk in their races.

Safety Warnings: If you have health concerns, please take your time. You can even bring your oxygen tank with you like John BeeBee did last year. No matter where you’re running or walking on race day, make sure you have plenty of water available. If someone falls behind, make sure everyone is accounted for when you reach the end. 

Lastly, June is Headache and Migraine Awareness Month, so feel free to add purple to your race gear to show support for all who suffer from head pain.