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Clusterbusters Inc

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Nonprofit Overview

Causes: Health

Mission: -

Community Stories

102 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

My son has suffered with clusterheadaches for 20 years. For a very long time we had no idea what was wrong. Until one day I was searching 'headache disorders' and he saw the picture on my screen. His response was 'THAT'S IT'. It was a picture on Clusterbuster's web page. From that moment on, we found hope. Thank you to thîs wonderful organization.

General Member of the Public

Rating: 5

Does a fantastic job of advocacy, education, and furthering research for Cluster Headaches. Many lives have been saved through their work.

General Member of the Public

Rating: 5

Clusterbusters.org has been a life saver for me and so many suffering with cluster headaches. After years of searching for a diagnosis, back in 2005 I finally got one. But very few resources, support groups were available EXCEPT for Clusterbusters.org! I found them and have been educated, updated, included, supported and loved by Bob Wald and hundreds of other relentlessly devoted people who truly CARE about this debilitating and sometimes lethal affliction. Clusterbusters.org isn't just a non-profit, it's a home, for all diagnosed. Without it, I would not have gotten the information and support needed to continue my battle.
With Sincerity - Jennifer Gregg Ramey

Steven T

Volunteer

Rating: 5

After 10 years dealing with the pharmaceutical merry go round , nothing of which worked ,my wife read an article of a group going to D.C. For headache on the hill. I was in high cycle at the time , 12-18 hits a day and knew nothing about 02.
I immediately refused , but of course she signed us up. On the 5 hr trip to D.C. , anxiety was high , I was terrified to discuss my condition with strangers.
As we walked to the hotel entrance a group of 8-10 people were outside. I walked over and was greeted with handshakes and hugs , WTF , these people don't even know us .
Little did I know then that the first people I met are the pillars of the cluster headache community , Bob Wold , Cindy Reynolds , Lee Markins and Bill Mingus .
That decision by my wife made saved my life ! After 34 years she is my rock and I love her dearly !
Clusterbusters saved my life , and is continuing to save lives and research treatments for this horrific condition.

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Volunteer

Rating: 5

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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MrClusters

General Member of the Public

Rating: 5

Clusterbusters is a great advocate for cluster headaches. They fight in DC to help get better treatments for people that suffer from all types of headache conditions. They are here to help and they do help so many. They are the real deal ! Thanks Clusterbusters for all that you all do!

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General Member of the Public

Rating: 5

A truly great organization that is helping so many people battling the devastating illness that is cluster headaches. The information, education and support provided by Clusterbusters is saving lives. There is no other place anywhere with this kind of information that so many have used with such great success. I just can't rate this organization high enough. Keep up the great work!

Client Served

Rating: 5

This organization goes above and beyond each day for the individuals suffering from Cluster Headaches. The support this organization offers is one of a kind and they have saved many lives, including my own. I cannot thank this organization enough. The conferences they hold each year are so informative. I’ve learned so much from attending from the doctors, researchers, and Bob Wold. This organization needs more recognition. I love Clusterbusters!

Ainz66

General Member of the Public

Rating: 5

Clusterbusters saved my life !
I know people use the term " saved my life " quite loosely , but I mean it in the truest sense of the words.
I have had Episodic Cluster Headaches since 1985. I tried every pharma medication, every hospital out- patient and in - patient treatment, I tried a whole list of holistic therapies ... acupuncture, acupressure, kinesiology, water therapy, gem therapy, cupping, Chinese herbal remedies etc.
I was living like a hermit. All aspects of my life were affected. My marriage, my children, my family, my profession, my sanity ! I was afraid to leave the house, afraid to sleep, my Dr dreaded my visits.
I was suicidal, I had become a husk of the woman I once was.
I was introduced to Bob Wold and Clusterbusters about 15 years ago. They took me under their wing, they shared with me the way they treat their CH., they encouraged me to be strong, and gave me unconditional support on my journey to managing my CH.
I haven never looked back and I now enjoy life to the full !
Not only have CB given me my life back, they have lifted the spirits of my family and friends who watched me decline both physically and mentally.
Now, my life is like it should be. My pain is managed, my relationships with family and friends is strong, I am fulfilling my love of travel, I'm running a successful small business , I am socialising ( a lot ! ) .... life is wonderful !
I have met some amazing people through CB. They are fabulously strong people , they are very dear friends.
Words will never be enough to convey my heartfelt gratitude for the unconditional love and support I have been shown.
I am an incredibly proud patient advocate and I have travelled to USA from Scotland every September since 2015 to attend the Clusterbusters annual conference. A wonderful way to keep yourself educated ! The camaraderie is the best feeling in the world !
My gratitude is immeasurable !
❤️

Lee M

Client Served

Rating: 5

Clusternbusters is committed to finding an effective treatment for the worlds most painful condition. They have helped thousands of people who had no where to turn find relief. Clusterbusters is truly a life saving organization.

Dan P.1

Client Served

Rating: 5

By the time I found Clusterbusters 5yrs ago I had ALMOST given up hope. The information and the help I received saved my life.

Anita W.

Client Served

Rating: 5

An amazing group of people who have worked tirelessly to help Cluster Headache sufferers. Their research, outreach, support and advocacy changed my life.

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Client Served

Rating: 5

Clusterbusters has served the cluster headache community all over the world. They are involved in research, education and advocacy for those who suffer from "suicide headaches" which is often described as the worst pain known to man. Our relatively small patient group need Clusterbusters in order to live normal lives. Thank you, Clusterbusters, for giving me my life back.

Professional with expertise in this field

Rating: 5

Clusterbusters is an unselfish, efficient, compact advocacy organization that goes the extra miles. This long standing, organization boldly makes an impact for everyone battling cluster headaches. Cluster headache is the most painful of headache conditions. It is a debilitating condition affecting a small portion of the population disrupting lives, creating immense disability and disproportionately leads to suicide. Treatment options are limited and often difficult to obtain secondary to lack of understanding and reimbursement issues. Clusterbusters uses its resources responsibly to support individuals with this poorly understood condition. Support is emotional, informational and via advocacy. Resources are also directed at research support seeking effective treatment options. The organization thrives with a network of dedicated volunteers making a real difference in peoples lives. Working with limited funding, Clusterbusters champions coverage for treatment and research while maintaining an informational clearinghouse and support group online. Working with government agency's and academic researchers Clusterbusters is at the forefront of understanding and researching treatment options for people managing cluster headaches. The limited resources they have are well used and responsibly disbursed with minimal overhead in the mission of serving the population afflicted by cluster headaches.

Eric96

Client Served

Rating: 5

I was a refractory chronic clusterhead for over a decade. I was able to function albeit in agony several times a day. During that time I had been following the organization and participated in online community support but had not attended a conference. This organization saved my life truly giving further support that was needed along with information that helped bring me to a managed state.
For the past 3 years I have gone from 6-8 attacks daily during peak periods and 2-3 during low periods to averaging 1 bad attack per month. This wouldn’t have happened with out CB!! In addition my other headache types have been manageable. An amazing bonus!!
Their work in the community is astounding. Bringing forth not only citizen science but has opened the eyes to pharmaceutical companies the need for having treatments just for us and has done tremendous work advocating on Capitol Hill.
Our community of “sufferers” is truly blessed.

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General Member of the Public

Rating: 5

Every year the organization gathers for conferences that are comprised of the leading neurologists, advocates, researchers, pharmaceutical companies, and patients. This is the largest and most effective patient advocacy group that is literally saving lives. While many groups offer good wholesome therapy, this organization's drive to not only lift people up out of the depths of chronic pain hello I that of functioning, thriving, pain free individuals is beyond praiseworthy.
Aligning themselves with other organization's to advocate not only for our condition but for other related disorders puts it on another level of nobility.
It has and continues to be a life saver

Client Served

Rating: 5

Bob Wold and Clusterbusters are tremendous advocates for Cluster Headaches (and other primary headaches). There are involved in political advocacy with Headaches on The Hill [Capitol Hill], research, and information sharing. This information includes both mainstream medical treatment, as well as alternative treatments as this is a stubborn and difficult problem. You can and should join me in support of this faithful and tireless organization that does so much good for patients like me.

Nicole C.1

General Member of the Public

Rating: 5

Clusterbusters saved my life, gives me hope and a reason to keep fighting. The best thing to happen to me since diagnosis was getting involved with CB. Every ch patient should know of Cluster Busters!

Michael F.2

Client Served

Rating: 5

They’ve help d me live my life again at least he most I can with Chronic Clusters

1

Volunteer

Rating: 5

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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Volunteer

Rating: 5

This organization is life saving for so many. Totally dedicated to advocacy, research and education.
The difference it has made in CH sufferers lives is unmatched.

1 Howard13

Volunteer

Rating: 5

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.

3 Cindy95

Volunteer

Rating: 5

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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Volunteer

Rating: 5

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.

2

Client Served

Rating: 5

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.

1 Andrew91

Donor

Rating: 5

Clusterbusters is a life changing organization and has helped many people find support, treatment, and a will to continue living.

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Volunteer

Rating: 5

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!