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Clusterbusters Inc

Rating: 4.87 stars   83 reviews 1,207

Address:

3850 Gaskins Road Suite 120 Richmond VA 23233 USA

Mission:

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2016 Top-Rated Nonprofit
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(630) 243-8100
www.clusterbusters.org

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Reviews for Clusterbusters Inc

Rating: 5 stars  

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.

 
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Rating: 5 stars  

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

 
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1 previous review
Rating: 5 stars  

4 people found this review helpful

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!

 
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Rating: 5 stars  

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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1 previous review
Rating: 5 stars  

5 people found this review helpful

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.

If I had to make changes to this organization, I would...

Find a way to fund it in order to allow more time to be spent in actual research and advocacy than in fund-raising. Bob Wold and the Board of Directors do a tremendous job of stretching a dollar, receiving nothing for their time, and even paying their own expenses, but we still need more funding to do the necessary testing.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

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!

If I had to make changes to this organization, I would...

Give them all of the money in the world, because that's the only thing I could do to help them.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2016

 
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Rating: 5 stars  

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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1 previous review
Rating: 5 stars  

2 people found this review helpful

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.

 
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Role: General Member of the Public
Rating: 5 stars  

Clusterbusters is an amazing nonprofit that has helped so many people with this horrendous disorder, including myself. Clusterbusters saved my life.

 
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Role: General Member of the Public
Rating: 5 stars  

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

 
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Rating: 5 stars  

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!

 
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Rating: 5 stars  

Cluster busters brings together people that are suffering from the most painful condition known to man. Through the tireless efforts of this organization, many treatments have been found, communication between both patients and doctors has led to great advances in treatment, and most importantly, many lives have been saved. The ongoing work will continue to improve the quality of life for patients, and I firmly believe that a cure will be found as a direct result of the efforts of these amazing people. Attending a conference is life changing. Bonds are made that are as strong as family, and the conference brings together people from all over the world. I can not express in words just how powerful the impact of this organization is for this community of patients. Thank you to all involved! Joe Sacks

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

I am a spouse of a episodic headache sufferer. It is agonizing for both the person that has it and the family that has to watch and feel helpless. This awful "illness" needs to be brought to the forefront of our medical and pharmaceutical community ASAP and the research needs to continue. Until you have cluster headaches or know someone that does...you will never understand the level of pain. Something needs to be done about this. This isn't about making money for our pharmaceutical companies...this is about finding desperately needed relief. They call it the "suicide headache' for a reason. How many lives have to be lost and pain endured before something is going to be done?!?!?! I am so thankful for Clusterbusters. It has given us so much information and people who understand at a time when you feel so alone.

 
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