ClusterBusters is a blessing. Without the organization and it's dedicated leadership and members many sufferers, including us, probably wouldn't be around....THANK YOU!!
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They are very helpful in getting information and using it to try to make the public and our federal government award of our plight. The group is well versed on how to get news out to everyone. Plus they advocate for all in chronic pain of some sort.
Saving lives every day !
The only cluster headache non profit raising awareness and helping people deal with this horrific condition .
Research
Advocacy
Awareness
Support
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This is the only cluster headache organization that is literally saving lives , support , advocacy , research and working with big pharma on treatments.
The conference , held yearly , is the most important treatment any cluster sufferer can give themselves, the love and support can't be found anywhere on earth , these people get it , your not alone , and from the first hug , your family ..
Love this organization , they saved my life when I had enough and wanted to quit .. They helped me get my life back ........
This organization pioneered Cluster Headache patient representation! Thank you Clusterbusters.
There are so many areas of coverage, including lobbying for research dollars in DC, patient to patient support forums, grant giving, hosting incredible, annual conferences (which just keep getting better & better), partnering with volunteers staffing the call rooms of suicide prevention hotlines (saving lives!) and much, much more. This organization represents the cluster headache patient community with such professionalism and care, it's been life altering for thousands of families.
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Clusterbusters nonprofit has a simple yet heroic mission: Amplify the historically muffled voice of cluster headache patients worldwide. Founded in 2002, Clusterbusters reached out to the medical community, researchers and whomever would listen! They now take teams (for 2 yrs and counting) to Congress! Amazing what this nonprofit has done for me and my family. Chronic cluster headaches nearly destroyed my life. I now have it back because of this wonderful organization. Below, is the statement on their website that I love the most......the pain of cluster headache is repudiated to be the worst pain known to mankind.
Through research, education and advocacy we hope to dramatically reduce the nearly 4 year time span in getting a proper diagnosis to get people on an effective treatment plan as soon as possible.
Misdiagnosed with migraines 30 years ago, then diagnosed correctly 25 years ago, I've relied on my neurologist (a globally recognized cluster headache specialist) for education and information. Sadly, for the past 25 years, I've been under-educated and poorly-informed. Joining Clusterbusters earlier this year and attending their recent conference have been life-changing, life-saving, transformative experiences. I've learned more in the past few months than I've learned cumulatively over the years about the condition, medications, treatment options, research studies, opportunities for advocacy; the list is boundless as is the generativity which is a cornerstone of the organization. Of particular note, is my gained awareness that there are countless others like me, ready and willing to connect, to share freely their experience and hope. Until recently, I had resigned myself to the dismal, stark reality that I'd likely forever be alone with my experience. In 30 years I'd not met another cluster headache survivor. With gratitude, I can say I have and because of Clusterbusters I'm confident I'll continue meeting others who've traversed similar trajectories, others who've experienced the abject despair, terror, hopelessness, helplessness, and wholly incapacitating pain associated with cluster headaches. Clusterbusters is a vital cluster headache community resource for survivors and supporters and interested others, a life-line onto which one can take hold of and no longer feel adrift, untethered. It has become my absolute first line resource for information I require regarding the condition and the whole of managing it. My only regret is that I didn't find it sooner because, now that I have, I can't imagine letting it go. In its absence, I'd be loathe to consider possible adverse consequences for some/many of those who've found a home in the organization and, perhaps especially for those who long to find and continue searching for a credible, singular, multi-dimensional resource available for providing them with the help they so desperately want and need.
Clusterbusters is a life changing organization and has helped many people find support, treatment, and a will to continue living.
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I have suffered for 12 years and have been participating in ClusterBuster events for over 5 and every year gets better and bigger. And there's a reason. The people that make this organization tick are the most genuine, kindhearted, and loving people you'll ever meet. They have literally saved my life along with many others. I can't wait to see the things we achieve!
Clusterbusters gave me my life back. 15+ years I suffered with Chronic CH, dealing with 5-8 attacks a day ranking from a 7 to a 9 on the pain scale. (As a point of reference, a broken toe on Saturday night and wearing wingtips to church on Sunday is a 5.)
From that experience, through what I have learned from Clusterbusters, I just celebrated 61 weeks 99% pain-free. Yes, I am counting! The longest I ever went pain free during that 15+ years was one 90 day break. I had a few two or three day breaks, but they were maybe once or twice a year. I cannot say enough good about Clusterbusters Inc and what Bob Wold and the others in the organization are doing for those of us who have the world's most painful medical condition.
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After spending over 25 years suffering with Cluster Headache with no medical help at all, nor with any support from anyone who even knew what my malady was I finally have found hope. The compassion as well as the dedication to finding a cure, and on the way to a cure, a remedy, is the hallmark of this organization. My life has been made much the richer for finding them.
It is impossible to calculate how many have sought relief from the pain of CH through suicide before this organization came on the scene, and I might have been one of them had i not found hope. I know I have lost 12 friends in the last 10 years, but hopefully with the help of Clusterbusters we will be able to erase the nickname of "Suicide Headaches" from Cluster Headaches, and we will be able to give people their lives, livelihoods, and families back.
I honestly would not have survived with Cluster Headaches as long as I have without Clusterbusters, and that is a fact. Their support, help, and research has kept me going. I have chronic cluster headaches and have lived with them for over 8 years now. Doctors have given up on me, but Clusterbusters hasn't. They helped get me more relief than medical science ever did. They gave me more support than medical science ever did, and more understanding than they ever did.
I came to them broken, and at a point where my last resort was either try them, or end up dead. They saved my life.
Thank you Clusterbusters!
Clusterbusters has been leading the way in support of Cluster Headache patient advocacy, support, and research. Their hard work and efforts have led to dramatic quality of life improvements for myself and others. I am so thankful for the work they do.
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CLUSTERBUSTERS has become an essential group for the advocacy and education for and about cluster headaches. The organization serves the entire community of those with this painful ailment. It is an organization that impacts peoples lives at many levels, up to and including saving the lives of many who are ready to give up.
