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Clusterbusters Inc

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Nonprofit Overview

Causes: Health

Mission: -

Community Stories

87 Stories from Volunteers, Donors & Supporters

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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6

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.

1 Steven T

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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6

Volunteer

Rating: 5

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 ........

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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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12

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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5

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!

1

Client Served

Rating: 5

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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7

Client Served

Rating: 5

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.

1 Mystina D.

Client Served

Rating: 5

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!

1 Eric60

Donor

Rating: 5

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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3

Client Served

Rating: 5

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.

1

General Member of the Public

Rating: 5

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

1 Eric96

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

1

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!

1

Client Served

Rating: 5

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

2 frilling

General Member of the Public

Rating: 5

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.

3 Angela147

Client Served

Rating: 5

As a supporter of a cluster headache sufferer, I can assure you that dealing with cluster headache can make you feel very lonely and helpless. Finding Clusterbusters Inc. has been instrumental in helping me know I am not alone and I have become a stronger, better supporter. No one understands how horrible this medical condition is better than those who suffer with it and their supporters. Clusterbusters Inc. offers much appreciated support, compassion, education, treatment options, and advocacy and I am very thankful for them.

2

Client Served

Rating: 5

I have had clusters for 20 years now and can say I was truly lost until I came across these guys and gals. The work they do is tireless and Bob Wold remembers everyone and always makes time to respond to any query.

I have been lucky enough to be in remission for 2 years but now they are back and this is the 1st place I visit as I know I will get the best help and advise from people who really understand this debilitating disease...

4 Jean72

General Member of the Public

Rating: 5

I visit the Clusterbusters forum just about every day. My son suffers from this insidious disease. Cluster headache has got to be one of the worst conditions a person can have. Most people are unaware of how devastating cluster headaches really are. We need to raise awareness. I am grateful to have found the Clusterbusters website. Although my heart aches for the poor sufferers it is good to know that I am not alone as a person who is affected by this condition. There is a lot of useful information and even hope that something others have tried may work for us also.

3

Client Served

Rating: 5

I recently attended the 10th annual Clusterbuster Annual conference. My 10 yr. old son was diagnosed with episodic cluster headaches, earlier this year. I was desperate to get information on how to deal with, and live with this dreadful condition. Clusterbusters is an amazing group of sufferers, supporters and advocates. So many of the inroads in treating this disease have come from the interchanging of ideas and therapy options that the sufferers on the front lines have shared via groups like Clusterbusters. I am now armed with knowledge, options and incredible support from others I have met through this group.

2

Advisor

Rating: 4

ch sufferer for many years first at age 7
I had breaks but they went super chronic 7 per day kip ten three hours long
now these days I take melatonin 2 mg also verpamil but ween of it when possible i do notice if I dont have bits of verpamil i get bad shadows but am much better now aftrer finding about melatonin
May people with ch have the strength to not give in and keep fighting

2 Cluster A.

Volunteer

Rating: 5

Clusterbusters, President Bob Wold, has saved not only my dads life (chronic Cluster Headache Sufferer) but the lives of so many others that have to live with this undescriable pain, which is known to be the worst pain know to medical science thus the name "suicide headaches". My dad moved in with me years ago at age 28 and continues to live with me due to this debilitating condition/disease.

Bob Wold's knowledge, wisdom, compassion and commitment to educating and spreading awareness about Cluster Headaches is groundbreaking. I ask those of you reading this to take a minute to go to the cluster buster website and learn at least one fact about cluster headaches. Pass the one fact on to one other person asking them to do the same. That one thing could save so many lives. It saved my dads life and I can 100% say without a doubt Cluster Busters with President Bob Wold will open your eyes to this.

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2

Volunteer

Rating: 5

My father has suffered with Cluster Headaches for 17 years and I have become his primary care taker over the past 2 years. ClusterBusters and Mr. Bob Wold have saved my dads life. I will forever dedicate my life to do my part in helping. Mr. Bob Wold has stuck by my side not to mention thousands of others. He stood up and created ClusterBusters that brought a LIGHT and RAY of HOPE to my dad and I and thousands of people around the world. Thank You

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