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Clusterbusters Inc

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Nonprofit Overview

Causes: Health

Mission: -

Community Stories

102 Stories from Volunteers, Donors & Supporters

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

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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4

General Member of the Public

Rating: 5

Cluster busters and it's advocates, members and support gave me my life back and the ability to take control over cluster headaches. Life saving.

5 Alicia51

Client Served

Rating: 5

Clusterbusters literally saved my son's life and my sanity!! Best group of people I've ever met from the Top of to the bottom! Non-judgmental, scientific, reliable help and support!!!!!

2 Danielle74

Volunteer

Rating: 1

A friend of mine donated cash to this place and they denied ever receiving the donation until my friend posted the proof on facebook after they had been ridiculed and bashed for claiming to have given a donation and the owner of cluster busters was forced to admit my friend gave them a donation but that was only after the people of cluster busters attacked him.. I wouldnt advise anyone giving to these people and ive contacted the IRS to let them know they are taking cash donations and not reporting them .. good luck with that

4

Volunteer

Rating: 5

The reason I give them 5 STARS? This volunteer group is literally driven by the spirit of caring people helping each other!

What began as a small online support group has grown into a national cluster headache support/research/education/advocacy non-profit. Through their annual conferences, advocacy work, and projects which bring together patients, healthcare stakeholders and researchers, Clusterbuster's paves the way for medical advances on a disorder many in our community had barely heard of a few years ago.

Extraordinary organization!

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8

Board Member

Rating: 5

A TOP NOTCH NON-PROFIT! Before I found Clusterbusters I felt hopeless after spending several years bouncing from one doctor to the next trying countless ineffective medications in search of pain relief from cluster headaches. It's because of their educational website and the peer support I received on their message board that I've finally been able to manage my chronic cluster headaches, return to full time employment, and very importantly ENJOY LIFE once again. Clusterbusters compassionate volunteers are dedicated to helping individuals with cluster headaches find pain relief as they actively pursue the medical community to research and find a cure for this debilitating disorder. I'm so thankful to Clusterbusters for all they have done for me and my family!

3 Steven49

Donor

Rating: 1

GAVE money to the owner of this place only to have its members say I was lying about donating and the owner of cluster busters refused to set the record straight publicly that I gave a donation and tell the people in his organization to stop accusing me of lying. I would never give to these people again they even tried to ruin my business by saying I was making money off them and not giving them my donation which was proven false when the owner of clusterbusters was forced to admit I did when I posted his thank you privately to me. these people are horrible.. calling me a liar and saying I never donated when I did. I have proof they did this and proof I donated.. do not give to these people they hurt people and dont care about people trying to help them . who takes someone's money then allows its organization members to attack the donator? and does nothing to stop it or set the record straight? look up holy grail mushroom spores on facebook for proof of what im talking about before you donate to these people..

4

General Member of the Public

Rating: 5

Our Life Changed for the best, 1st time we met with the group was to advocate in Washington, DC for Headache Disorders. They are for the people and not there own pockets like so many groups out there. Looking for a cure and are there for the patients and families. Advocating, support and research!!!

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3

General Member of the Public

Rating: 5

With out this group I have no idea where my husband and i would be! My husband suffers from Chronic Cluster Headaches and the support from this group along with Advocating in Washington DC with them and research they are involved in they truly remarkable people! Also a Nonprofit so if at any time you want to donate this group truly using the money for research, education and support!.......!!!! ClusterBusters gave us hope again and continue every day to help people!

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4 Amanda163

General Member of the Public

Rating: 5

I was diagnosed with CH last year after being misdiagnosed with migraines for 10 years. After I was informed of what kind of headache I was really having, I started doing research. Clusterbusters helped me figure out different things I could try to help ease the pain during an attack. Without them I would have been clueless about treatment options for these headaches. I am grateful that I found their website and an able to continue with my life.

4 bob.bowling1849

Volunteer

Rating: 5

Clusterbusters and Bob Wold have given me my life back. In return, I have devoted the last ten plus years of my life to volunteering and advocating for others with this horrendous condition called cluster headache, aka suicide headache, aka the worst pain known to man.

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10

Volunteer

Rating: 5

As a chronic sufferer of cluster headaches, aka suicide headaches, this nonprofit has literally saved my life. I am so grateful that I have volunteered at different levels for this organization for over seven years, and it's still not enough. How can it ever be enough when you owe your life to someone? Clusterbusters changed me from a state of hopelessness to one of optimism and gratitude. I advocate not only for myself, but for many others as well which imbibes me with a sense of satisfaction and accomplishment that few will ever know.