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2017 Top-Rated Nonprofit

The Cluster Headache Support Group, Inc.

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Nonprofit Overview

Causes: Health, Neurology & Neuroscience

Mission: The Cluster Headache Support Group, Inc. is a 501(c)3 non-profit organization dedicated to improving the lives of those suffering with Trigeminal Autonomic Cephalgia and Migraine through Research, Education, Fact-based Information, and Compassionate Support. We provide practical, relevant information for the patient community and healthcare, help people learn to live with this debilitating disorder, and drive scientific research in collaboration with pharma and healthcare to find better treatment options that will help reduce their time to living pain free. Our ultimate objective is to find effective prevention and ultimately elimination of the debilitating impact of these disorders.

Results: Directly address Medicare coverage of oxygen therapy for cluster headache. New research initiatives regarding TRP Channels as new target areas, engage new research opportunities and initiatives. Deliver an easily searchable Cluster Headache FAQ wiki Continued Awareness and Advocacy efforts with special focus in partnering with Healthcare and the Biopharma/Pharmaceutical industry as well as major headache research and healthcare centers. Deliver a professional video about Cluster Headache. Patient and Healthcare educational and training materials. Publish “Educational Series” of presentations. Increase our patient reach, further reducing the number who currently suffer alone and without current and complete information regarding options, both approved and not yet approved physical and mental health treatments, financial and career support programs, and compassionate support for those in need. Continued research on ketamine infusion therapy New research initiatives regarding TRP Channels as new target areas Deliver a Spiral Research Portal focused on ongoing data collection

Target demographics: Cluster Headache and other Trigeminal Autonomic Cephalgias

Direct beneficiaries per year: Over 100,000 patients worldwide!

Geographic areas served: Cluster Headache is one of the most painful and debilitating conditions known to medical science, yet most people have never even heard of it. It is rare, occurring in about .1% of the population, and as such has very little support for research and development of new medications. In fact, there are no available preventive medications for this disease that strikes down the sufferer multiple times a day. Please help us raise awareness by wearing this t-shirt, donating toward research and awareness efforts, or at least sharing our link. We'll take all the help we can get!

Programs: -Target identification, research, and engagement with Biopharm/Pharma, Healthcare, Regulatory, and other Charity Organizations - Data collection and patient reporting tools - Subsidizing specialized medical equipment for sufferers - Information, Education, and Compassionate Support for sufferers

Community Stories

171 Stories from Volunteers, Donors & Supporters

4

Client Served

Rating: 5

CHSG is truly invaluable to me and so many others. The support, resources, information, compassion etc are one of a kind. This is a disease with no current cure that brings people to their knees in desperation for relief. I love how CHSG has continual contact and meaningful interactions with leading experts/pharmaceutical companies, hospitals, physicians etc who are working to develop treatments for us. You can also find plenty of supporters as part of the group who are there trying to soak up every bit of information they can to better support their loved one who is affected with this disease. It's just a well rounded, meaningful group with REAL purpose. The founder, Chris, and other admins go above and beyond to actively support each member regardless of their level of need. The atmosphere is warm and inviting. They are constantly posting suggestions, references, real information, trials, concrete data, and just the most kind words that we need to hear in our darkest moments. They are involved and it's easy to see how much they truly care about each one of us. Sure there are other groups out there. However, I've discovered many of them discuss and even encourage relief without limits. Meaning, things that are not legal or ethical, or safe etc. We ALL know the desperation for relief, but the last thing I want to do is jeopardize my family, my health further, and my life by trying something that is at best extremely risky, at worst, illegal. I appreciate a group that is making meaningful strides in obtaining effective, legal treatments for those like me. I have been blessed immensely every day since I decided to join CHSG. If I ever met a fellow sufferer, and I sure hope I never do, the first thing I would do is direct him/her to CHSG. It is literally a life saver with a wealth of helpful information comprised of the absolute most caring individuals.

Danielle112

Client Served

Rating: 5

I have been suffering from Cluster Headaches since 2013. I am a working professional in the medical field, a wife, and a proud mother of a very active toddler. Very recently I found CHSG and am immensely greatful that I did. It gives you a community of people who are going through the same struggles of daily living. They offer a wealth of information and an immediate connection to resources that I was unable to find after years searching on my own. Most of all when you are living a life day in and day out full of pain. It is easy to get overwhelmed and feel alone and as if there is no one out there that can possibly understand what you are going through. CHSG gave me that. Continues to give me that. A connection. Let's me know that no matter how bad it gets there is a place that I can go for support, encouragement, and guidance.

Joanne56

General Member of the Public

Rating: 5

One of the best cluster headache groups I've found. Extremely informative and very helpful. I would recommend this group to anyone who want to know more or receive help for their cluster headaches.

Previous Stories
4

General Member of the Public

Rating: 5

Thankfully I found this group. I wasn't sure if I had cluster headaches until I came here and was able to put all the symptoms I'm having together. The information I've received is invaluable and the support so extremely helpful. I would highly recommend this group to anyone looking for answers, information, help and or support.

Nick78

General Member of the Public

Rating: 5

Hi, I have been suffering from cluster head aches for as long as I can remember but I only recently discovered CHSG. The support and information I have received from this group has been awesome to say the least especially at 3am when the beast has kicked in. Just knowing there are other people who understand what you are going through is a great help and long may it continue.. Thanks CHSG .. Nick (UK)

1 Kathleen132

General Member of the Public

Rating: 5

Before I joined this group, I had google. That's it. No one could explain what was happening to me. I self diagnosed, and joined this group to find many knowledgeable people, and open arms and hearts aplenty. I learned everything I know about my condition here first. This group lead me to getting a diagnosis after 8 years! Thank you for all that you do!

2 Claudia Lily M.

Client Served

Rating: 5

CHSG changed my life. I had been misdiagnosed for 6 years with migraines and sinus headaches and after many failed medications I had turned my back on doctors and on hope itself. Finding CHSG gave me the information and support I needed to find a specialist neurologist and finally get an appropriate treatment plan. I now have assess to the best known treatment for clusters. Life is still difficult, there is no cure, my condition has deteriorated and I spend a good part of each day in pain. BUT I never feel alone and always know that if things get really bad I can reach out to those who truly understand. The admin team are outstanding and devote so much time to supporting the group and sharing information and the group members must be the most compassionate, caring, good humoured and strong individuals I have ever had the pleasure of encountering. No judgement, no pseudoscience, just pure love, support and excellent advice.

Previous Stories
4

General Member of the Public

Rating: 5

I have suffered from CH for six years and have been a member of CHSG for around 3 months. The pain of CH is totally debilitating and the anxiety and depression which accompany this condition can be equally as crippling. For 6 months of the year I am a perfectly healthy, positive, driven person and for the other 6 months I am anxious, depressed and exhausted and spend around 3-8 hours a day writhing in agony. CHSG were a life line for me during my latest cycle which coincided with my final semester at university. With all of the stress and the constant pain, I was questioning my capacity to cope with it all much longer and fear that my mental state was rapidly deteriorating to a dangerous low. CHSG welcomed me with so much warmth and a level of understanding that can not be found amongst non-sufferers. On an emotional level, the group were like a backbone to me, holding me up when I felt at my weakest, encouraging me to hang on for better days. However, CHSG also provide outstanding practical advice. After seeing endless doctors and being misdiagnosed with a whole host of other condition, I had given up on medical help but with the advice and support of CHSG I was finally able to get a referral to a neurologist who specialises in headaches and facial pain. After 6 years of suffering alone, with no form of effective treatment, I am now a member of an amazing support network and am able to reach out to those who understand to offer care and be cared for, I am under a neurologist who is the first of many many doctors I have met to understand this condition and I am armed with a with arsenal of effective medications for when the next cycle hits me.

Coping with the pain and psychological impacts, trying to get a proper diagnosis, to see a good doctor and to get the right medication for CH is a bit like an uphill battle and until I found CHSG I felt that it was a battle I could not win. Now with a small army of clusterheads behind me, willing me on and offering brilliant advice and support, I feel strong enough to face this condition and to take the steps necessary to reduce my pain. CHSG consists of some of the most compassionate, loving and genuinely kind hearted individuals I have ever had the pleasure of encountering and I am very grateful and proud to be a part of the CHSG family.

Writer

Donor

Rating: 5

Without this group I would feel isolated and alone. I live in India and access a lot of my info about my disease from this group. It has helped me advocate for treatment with doctors and my insurance company. Seeing what others go through, which echos my own misery, validates my feelings and provides solace. Just knowing there are others out there like I am helps tremendously in coping with this incredibly awful condition. Thank you CHSG for all your help!

Previous Stories
7

Client Served

Rating: 5

The CHSG has been a vital part of my life with cluster headaches. The members have supported me in my hours/days/months of need with caring messages and more importantly the right information about treatments for this horrible condition. The CHSG has helped me find the right treatment for me and has guided me with scientific evidence for my condition. It is a place to feel loved and for me, it is the place that I finally felt I wasn't alone in my misery!

1 Georgia Kate M.

Client Served

Rating: 5

When I was diagnosed with Chronic CH even my doctors didn't really know what it was or understand that amount of pain I was going through. I felt scared and alone until I found this support group. I feel safe, supported and no longer alone and in this fight. It has pulled me out of some dark places and has truly been a life saver, I don't know what I would do without knowing I have this amazing support group behind me.

1

Client Served

Rating: 5

Have learned so much about this horrible condition that my husband suffers from, when most people don't know much about it. Forever grateful for this support group!

1 Derek R.

Donor

Rating: 5

CHSG has been an incredible source for myself and my personal supporters to enrich my life with tips, advice, and general emotional support as I've struggled with this disease. The members suggestions on any and all of the ways to cope and handle life have been nothing short of a true blessing as I continue to cope with this in my life. I am so thankful for this group and all of the members.

1 martoglio

General Member of the Public

Rating: 5

CHSG provides the support that so often is missing from family and friends. It relieves the isolation felt by so many with this terrible condition. By being able to express feelings and fears, many of the group have gained the knowledge and confidence to obtain proper treatment and live a better life.

Previous Stories
7

Volunteer

Rating: 5

I found this group several years ago and it has been wonderful. Our condition is rare enough that you don't know other people who have it. This group provides a safe and friendly place to make you feel that you are not alone. Over time, CHSG has provided treatment options and ventured into finding new areas for research. I am aware that the administration has saved many lives, as our condition is also called "suicide headaches".

1 Charles84

Board Member

Rating: 5

Imagine a world where you contract a rare disease. That world is much different than the world you live-in. In your world, you get sick, go to a doctor who knows you and your illness. You discuss treatment options and you are on your way to a better you. In the rare disease world, finding a doctor who knows the illness and can identify treatment options is a challenge. Sometimes, just finding out information about your illness can be daunting in the "rare disease" world. This is where the "Cluster Headache Support Group" helps. They have experts and a worldwide community that educate and inform people with the rare disease known as "cluster headaches". In addition to education, CHSG partners with the "healthcare" community to support studies to further the cause of finding treatment options, and one day possibly a cure. They are the "voice" in the darkness that help people in great pain, afflicted with this disease. They participate in hearings to Congress for research dollars to further study the causes of this disease. While keeping their fingers on the pulse of the healthcare community to pass along any and all information to its members. I was diagnosed with cluster headaches in 1998, chronic in 2011. I have been unemployed disabled since 2012. They were the "only" voice to help when other could not. Helping me to sift through the language of healthcare and interpret the jargon. I don't know where I would be without there guidance and compassion.

1

Client Served

Rating: 5

I honestly don't know what I would do without this group. So many doctors are clueless regarding Cluster Headaches, so to be able to talk to people who understand and know what you're experiencing is so incredible. I have learned SO much from the people in this group and other ways that I can help manage the pain. Not only is this a source of invaluable information but it's a source of incredible support and understanding. I am so beyond thankful for this group and the people in it.

1 annmathews

Volunteer

Rating: 5

I love CHSG. I am both a member and a moderator of the Facebook support group. CHSG has helped provide me with support, knowledge, refuge and friendships.
CHSG has done so much to help raise awareness for cluster headaches and I am excited to see what's around the corner.
CHSG is awesome.

Previous Stories
4

Volunteer

Rating: 5

CHSG provides me with information and support I wouldn't find elsewhere. I love CHSG. I benefit every day from the online presence and the behind the scenes hard work of the Board and Chris Hannah, President of of CHSG.
I love the objections for 2016 and look for to the great progress I know that will be made.

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Linda469

General Member of the Public

Rating: 5

It is so good to know I am not alone and it is so great to know what everyone else is doing to combat it.

1 Laura246

Volunteer

Rating: 5

I have been a member for several years. I found the non profit when I was searching for answers and desperate for help. These TAC's are known as suicide headaches and I see this non profit support and educate so many who are feeling as desperate as I was originally. Up to date, current medical trials, research and scientific based information can always be found on the site. I learned of the latest ATI neurostimulation trial though CHSG and am now an implant recipient, helping future cluster patients by tracking and sharing my data. I have been a volunteer administrator for a few years, The caring and knowledge of the all volunteer admin team is vast, They will readily support and member while sharing a particular study link to help them member get the correct information. The members will surround, support and lift up fellow members though the rough times as celebrate the victories as well.

Previous Stories
6

Volunteer

Rating: 5

The support and freely shared information is a life saver for me. There is help around the clock from around the world. It is a safe place to be when your world revolves around chronic pain.

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1

General Member of the Public

Rating: 5

There really are not any words to describe the help and support CHSG gives to everyone of its members, it also helps to connect people who are suffering this horrendous condition with each other. I will never be able to thank Chris Hannah enough for founding it, after my initial diagnosis of CCH I really had no idea of treatment options or pathways to take to ensure I got the right treatment CHSG provided all of this and more. The Admins work tirelessly to help keep it a safe environment for sufferers to visit, whilst also being a mine of information and support themselves. Thank you so much my clusterheadache journey has been made much easier by you all.

Previous Stories
5

General Member of the Public

Rating: 5

Since I was diagnosed with CCH this group has been my absolute lifeline, it always has up to date information and the most amazing support at anytime day or night. It is a private space for people who are in a very low place at times to post and learn in a caring enviroment Thankyou for everything you have done for me CHSG.

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General Member of the Public

Rating: 5

When I was diagnosed with cluster headaches this past fall, I was at the lowest point of my life. I was experiencing debilitating pain and was given a very bleak picture of my treatment options. If not for finding the Cluster Headache Support Group, I'm not sure how I could have coped. The wealth of information they've shared with me has helped me to understand my diagnosis, and to weigh the benefits and risks of all available treatment options. I feel empowered, rather than helpless. Beyoncé impacting my own health, CHSG has helped me to educate my family and friends through their awareness video. They are the absolute best resource for coping with cluster headaches, both personally and as a support person of a sufferer.

3 Gratefulrich

Client Served

Rating: 5

It is so easy to feel hopeless with this illness. It is not a common problem and most of the people around me just don't get it. How many times do I have to hear that someone knows how bad it is because they have had headaches. This group is full of people who DO understand. I have a place to get support, I have a place to vent, I have a place to learn from others and, on good days, I have a place to provide support to others. This group has changed my life!

3

General Member of the Public

Rating: 1

This support group is suppose to be for people with cluster headaches but has turned into a forum for migraines. The majority of the group appears to have cluster migraines and most of the posts have references for people with migraines and not clusters. The admin is even posting links to her blogs which is migraine based which she gains financially by how many people she gets to view her blogs. If someone is obviously referring to their migraines such as 17 hours or 9 days of headaches no one corrects them that cluster headaches don't last that long. They also talk about triggers that are migraine related and not cluster headache. The admin even said in one post that cluster headaches have very few triggers yet no one says anything when a long dragged out post on triggers is made. They really need to change their name to cluster migraines as that is the information that is being supported in this group. As a person with only cluster headaches this information is very confusing to say the least but also I honestly don't feel like I fit into this group at all. I hate to see new members getting the wrong info regarding their condition but that is exactly what is now happening in this group ever since the former admin stepped down. They need to keep migraine information out of this forum or change the name.

Comments ( 1 )

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channah 03/05/2017

We are so sorry that you found the information confusing. That is good feedback for the moderators and staff. In fact, many cluster headache sufferers also have migraine headaches so it is inevitable that the topic will come up from time to time. There is actually no such thing as cluster migraine. We do also support all Trigeminal Autonomic Cephalgias, to include SUNCT, SUNA, Hemicrania, etc. Triggers are relevant to both headache types and are important to recognize in order to reduce your number of attacks. They are similar to those of migraine sufferers although migraineurs do react more frequently to bright light (photophobia). As you become more knowledgeable about CH, you are welcome to come back. We tend to have many very knowlegeable members and moderators.

3 Ruth68

General Member of the Public

Rating: 5

The CHSG is a well organized and knowledgable support group. The board members and admins are on top of everything. The members (a/k/a "family") are the most supportive "family" there is. When a post is posted, it is answered or commented on in the blink of an eye. No one is judgmental. We are not alone. Everyone is there for you. The knowledge within the group is amazing. Sadly, the medical field is not seasoned with cluster headaches. We in the CHSG know the pain, feel the pain, feel the isolation , feel the isolation from family and friends, sadness, anger, trials and tribulations, etc. The CHSG is growing by the minute. Thank you Chris Hannah for forming this incredible group. This is my second family I know I can count on.