About Clusterbusters, built by people who understand cluster headaches
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Cluster headache can feel isolating, but there is a community that understands.
Mission and Values
We support research for better treatments and a cure while advocating to improve the lives of those struggling with cluster headaches.
This corporation has been organized to operate exclusively for charitable and educational purposes, including, but not limited to the following:
- To help its members find solutions to problems that exist as a result of cluster headaches.
- To educate its members about cluster headaches.
- To inform its members about research involving cluster headaches.
- To provide its members with resource materials to read and view involving cluster headaches.
- To encourage, participate in, and fund research into the causes of cluster headaches.
- To encourage, participate in, and fund research into treatments for alleviating the pain and various symptoms of cluster headaches.
- To encourage, participate in, and fund research into finding a cure for cluster headaches.
History
What began as patients trading notes on a message board in 1998 became a registered nonprofit in 2002, founded by Bob Wold after his own years of misdiagnosis. Today it is a community of thousands: patients, caregivers, researchers, and clinicians.
Since then, Clusterbusters has accomplished so much fighting for real change. Some highlights:
- Forced Medicare to reverse its refusal to cover oxygen, using Clusterbusters' own oxygen study, after a ten-year fight (2020).
- Partnered with Eli Lilly on the first medication ever approved by the FDA specifically for episodic cluster headache (Emgality, 2019).
- Helped bring the GammaCore device (2018) and Brekiya (2025) to cluster patients.
- Trained the national suicide prevention lifeline to recognize cluster headache (2012), and sustains federal advocacy through Headache on the Hill.
- Supported early research into non-conventional treatment approaches at institutions including Harvard and Yale, work that continues today through our partner site
Awards & Affiliations
Clusterbusters takes pride in giving cluster headache patients and their families the support and access to information necessary to manage this condition. Our organization was voted a top-rated non-profit organization by Great NonProfits for five consecutive years 2013-2017. We’ve helped countless people attend our annual patient conference and other advocacy events through our scholarships and are a vital part of pursuing and funding research on cluster headaches.
We’ve connected with other non-profits in the headache and migraine disorder spectrum to join with patients and other pain advocates to ensure our voices are heard and change is made. Some of the organizations we’re involved with include:
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- Coalition for Headache and Migraine Patients (CHAMP)
- Organisation for the Understanding Cluster Headache in the UK (OUCH-UK)
- National Headache Foundation (NHF)
- Headache and Migraine Policy Forum (HMPF)
- American Headache Society (AHS)
- Alliance for Headache Disorders Advocacy (AHDA)
- U.S. Pain Foundation
- Headache Cooperative of New England (HCNE)
- Migraine World Summit
- National Organization for Rare Disorders (NORD)
- And More
Our Executive Director, Robert Wold, has given PowerPoint presentations and speeches at various conferences, symposiums, and meetings to medical professionals and patients alike including those organized by AHS, HCNE, AHDA, and Migraine World Summit. These affiliations and partnerships helped Clusterbusters better serve the patient community through sharing the realities of living with cluster headaches and how this neurological condition differs from other headache disorders. With the help of the non-profit organizations listed above and many more, we work to improve the education, treatment, and support for those diagnosed with Cluster Headache.
Directors & Team
Our Board of Directors is composed of patient advocates with first-hand experience in cluster headaches or supporting those with the disorder. These men and women have spent years fighting to bring more awareness of this condition and are valuable members of our organization and patient community.
In the Media
Bob Wold and other cluster headache advocates have been featured in the media online, in print, and on camera. Cluster headaches are a fascinating condition, they strike at the same time of day, and seasonal changes can bring on episodic cycles or end them entirely. Media outlets are often just as interested in the alternative treatments some patients have found relief with, work you can read more about on our partner site.
If you're interested in interviewing a member of Clusterbusters or have questions, contact [email protected].
Supporters
Our non-profit organization would be nowhere without fellow cluster headache patients and other supporters of our cause for improving the lives of those with this neurological condition. For nearly 20 years, Bob Wold and our Board of Directors have tirelessly worked to promote research for new treatment options and offer a compassionate ear and shoulder to clusterheads who are struggling to survive each attack. We’ve grown from a handful of people sharing experiences on Yahoo in the 1990s to tens of thousands online today. Thank you to our supporters who have and continue to help us grow our reach to help clusterheads worldwide.
