Clusterbusters - Forming human connections for an inhumane condition
Could you briefly introduce Clusterbusters for our readers who might not be familiar with your work?
Clusterbuters is a 501(c)(3) non profit organization that serves those who experience cluster headache. We support research, advocate for patients experiencing cluster headache, bring awareness to cluster headache, and educate both patients and clinicians for best practices. Treatments include everything from oxygen to psychedelics and everything in between. We offer support programs, educational events, and conferences.
What is the core mission of your organisation?
To support research for better treatments and a cure while advocating to improve the lives of those struggling with cluster headaches.
A key part of your work is raising awareness. Why is this so crucial for a condition like cluster headaches?
While cluster headache is rare, it's not as rare as many think. Unfortunately, with any headache disease there is a stigma attached. Finding clinicians that are aware of the diagnosis and the appropriate treatment options can be difficult for patients. Historically it would take on average 10 years for a person to get an accurate diagnosis, and we are down to 5 years, but that is still far too long.
How do you work with medical professionals and researchers to improve the lives of patients
We partner with clinicians to provide them with patient stories, advise them on how they can best serve cluster headache patients, and we now offer Continuing Medical Education (CME) credits at our conferences to educate clinicians about treating cluster headaches and to be able to maintain their licensing. Our conferences are a unique experience for both the patient and the clinician to be in the same room. We also partner with medical schools, bringing in the patient story. In research, we work to put the patient at the center. This means advising researchers in their bid to get funding and all the way through the clinical trial process and through dissemination of information.
For a person who has just been diagnosed or suspecting CH, what is the most important first step Clusterbusters can help them with?
Providing accurate information is the key. Clusterbusters has over 20 years of experience and can help a patient know what information to provide the clinician, and how to have more productive conversations not just in diagnosis, but also ongoing treatment. Equally important, Clusterbusters provides support programs at every step of the way. We have our website, one on one programs, support groups, and in person conferences.
Could you tell us about your advice line and what someone can expect when they reach out?
When someone contacts us, they can expect to have a human connection. We do our best to answer every message or email sent in. Depending on the point of contact, and the needs of the person seeking help, we can connect via email, text, phone call, or video chat. Often a phone call can be the most expedited way because the conversation moves more quickly. Groups can be very helpful and typically a person has never met another person with cluster headache until they connect with us. If you have treatments that you want to pursue (or not pursue) that is ok, we are about helping people find the treatment options that are right for their circumstances.
Beyond medical advice, cluster headaches have a huge impact on daily life. What kind of support do you offer for challenges with employment, benefits, and family life?
Connection is probably our biggest support. We offer peer to peer support. If you talk to someone at Clusterbusters, it's someone who is impacted by cluster headache. From our Executive Director and Founder, Bob Wold, to our Board Members and Volunteers, we are all impacted by cluster headache. Most of us are patients, some are care partners or patient advocates. We can offer life experience and connections to resources and others who have been on the same journey. If you prefer one-on-one or group settings, we offer both. Every program we have for the one experiencing cluster headache, we have for the care partner. We collaborate with many organizations and know many of the resources out there. If we don't have a program, we will try to find a referral for you.
How can your online community help sufferers?
We pull together both in information, but also as support. While we all have unique experiences, we also have much in common. Cluster headache is medically known as the most painful condition known to man. It affects every part of our lives, we get that. Because of that, our community is full of people whose lives have been changed not just because of cluster headache, but because someone was there when they reached out. Now, they want to be the person that is there to help someone else. We are everywhere! It doesn't matter if you like email, social media, chat groups, or conferences, we have people who use the various media and are always aware if they see talk of cluster headache and ready to lend a hand to help them be heard and seen.
How can our readers help Clusterbusters?
If you experience cluster headache and want to help others, let us know. We support those who want to support others. We can help provide you with more information but also support. Listening to trauma can be traumatic and we want to help you as you help others. We love volunteers! If you have a talent, we can find a place where you can use that talent to help us. We are very much a volunteer run organization. We only have two staff members currently, a working board, and lots of passionate volunteers. Helping us fundraise is important so that we can be sustainable. Putting on an in-person conference is a lot of time, but a lot of money as well. We hear time and time again from first time conference attendees that the experience was “life-changing” and that they have hope again.
What is the most direct way for our readers to contribute financially?
https://clusterbusters.org/donate/
Who can support?
Anyone! We welcome any way someone can contribute. If your employer has a program, if you know about a grant or foundation, or if you have time to give. We accept all the help we can get. We also have people do things like fundraisers on their birthday via platforms like Facebook.
For those who can't contribute financially, what are some other meaningful ways they can get involved and support your mission?
We run on volunteer hours. If we didn't have volunteers, we wouldn't exist. We love our people who find meaningful ways to be involved. If you have a talent, even if it's something that feels small, it all adds up. If you want to be able to support someone new to the cluster headache diagnosis, we can help you do that. When I interview volunteers, I'm listening for not only what they are able to do, but what they are passionate about. I want to find the right spot for each person. Even sharing a post on social media or wearing a t-shirt to the store (or doctor's appointment) makes a difference.
Looking ahead, what are the biggest challenges for Clusterbusters, and what are your main goals for the coming year?
We have so many ideas and directions we could go, but we are a small but mighty team. We always need funding for the conference and to do the basics like having a website. We always need volunteers - we have so many different things from running support groups, to answering emails, to writing thank you notes, to marketing, to fundraising, to planning events (virtual and in person), so lots of things moving all at once. We are working on research projects current and new ones for 2026, the 2026 conference in Chicago, IL, the 5k in June, and find new ways to reach people with cluster headache that are not connected to others who understand. This means education, advocacy, and awareness in addition to the research.
Any other message?
We may live with the most painful condition known to man, but I've never known a community with so much joy and passion. When I step into the Clusterbusters conference, I am overwhelmed by the tears of joy - of no longer being alone, but realizing we have a family. Our family is strong and resilient. The clinicians and researchers that partner with us are like none other. They become a part of our family. If you haven't yet reached out, I have talked to people who have waited 10-20 years before reaching out, they all say they wish they had done it sooner. Know that we are here and we care. If you donate your time or money, we take that seriously. Whether it's one hour or one dollar, every single thing you do for us, it matters. Bottom line, we love our community. Without our community, we are nothing. With our community, we are everything.
