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2018 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

183 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.

Client Served

Rating: 5

For seven years I've suffered alone until I found this group. That alone helped me in ways that only a sufferer will be able to undersand. Helping me get the right mask for O2 and a genuine understanding of how I feel when I felt completely alone. I have no doubt that this group has saved people from suicidal thoughts as I know it has for me.

Gina Keller J.

Client Served

Rating: 5

I can't begin to say what this group has done for me. It's filled with the latest updates and findings on both CH and treatments. It sorts out all the nonsense remedies It has provided me a support system. A group of others who can truly understand what I am going thru. Clusters can make you feel alone and isolated. I no longer feel that way. It's given me a network of friends and support that I never imagined I could or would have. CHSG has literally saved my sanity and my life. I've had cluster headaches for 29 years. I have always felt alone, afraid, and honestly like a freak. I've never felt any of those emotions since joining CHSG.

Lucas D.

General Member of the Public

Rating: 5

This group has taught me so much about this disease. I have received so much support to pick me up through the bad days and a place to laugh in the good. I have met some great people and glad to call them friends.

Previous Stories
3

General Member of the Public

Rating: 5

They have been great! I have had positive contact with everyone that I have spoken with. They are a great support for people that are dealing with same thing and can relate.

General Member of the Public

Rating: 5

This group provides a great place for people to come seeking support and to know they are not alone in the world, with this rare and painful disease. That someone else understands what they are going through. Virtually any time of day when you need a friend, an ear, advice, you’ll find it here!

Susan Reinhart K.

Volunteer

Rating: 5

CHSG is an amazing support group. I have been a member since 2014 and am amazed at how much I continue to learn from fellow patients, supporters, and neurologists, specifically headache specialists. Members are like family to me.

Valerie B.2

Client Served

Rating: 5

CHSG has helped me in many ways. Sending me a better oxygen mask when I didn't have the money, information on new treatment options and lots of support. Before finding CHSG, I was misdiagnosed and dealing with doctors that didn't know how to treat CH.

Adrie M.

General Member of the Public

Rating: 5

I've suffered from cluster headaches for 11 years. Until I found CHSG I had no idea there were others. Now I have a supportive community that helps each other at our lowest points and celebrates our pain free days together. What anyone else would think are mediocre every day things like sitting through a movie with both eyes open and pain free is a huge deal and sometimes our best friends dont understand but we do. We are stronger together and I am happier and grateful could not come close to describing my feelings about this group. I made it through another cycle when I wasn't sure this time I would. They saved me.

Jamie C.2

Client Served

Rating: 5

CHSG is an organization that you can’t put a price on. They help people who are desperate and at breaking point because medical science can’t fix them. Not only do they improve everyone’s life who is suffering, they are truly saving lives by helping them find the right medical professionals and by offering support to those who can’t take the pain and disruption anymore.

Laura246

Volunteer

Rating: 5

CHSG is a caring, supportive and informative organization. They always have up-to-date information to share and keep the members informed of any trials that are recruiting. The redesigned website is packed full of useful information and clearly states the mission.

Review from Guidestar

Previous Stories
1

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.

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General Member of the Public

Rating: 5

I have suffered from Cluster Headaches for 7 years,had to wait 4 years for an official diognosis.
I have paid privately to see Specalists without succes.
Since I joined this group I have gained huge knoledge and incredible advice and peace of mine that We are not alone and the great people here are there to help eachother even though they are suffering.
Thankyou so much.
Kevin Francis

Client Served

Rating: 1

At first I thought this group was so supportive and helpful. Occasionally I watched them ban someone for subjects they didn’t like. I said nothing. Thought they had done something wrong & probably deserved it. Unkind of me, I know.
Then they wouldn’t allow sufferers who didn’t speak English to post, even though there is auto translate feature and other sufferers who spoke their language. Cluster Headache is not exclusive condition only for English speakers. I still said nothing, even though little things I saw bothered me.
Then they banned me, without message or notice, for talking about Vitamin D3. Yes, you heard me, D3. No warning, nothing illegal. The same D3 they have listed in their own files.
I understand and respect rules for safety, but I can not abide censorship. They have a section justifying and denying censorship in their files. I wondered, at the time, why they felt the need to justify themselves & deny it. Now I understand why.
Sufferers need to toss ideas around with painful, often chronic, conditions. Some work, some don’t. Not every idea is automatically illegal. In my opinion, if rigid oppression of ideas and pharma group think is what you are looking for, this group is for you. If you need kindness without judgement or censorship, I’d look elsewhere. Ty for reading this and may you be pain free.

Client Served

Rating: 1

This group is ruled with an iron fist to the detriment of its members. I was extremely involved with the community as it started off, but I left voluntarily after seeing the following: censoring of legitimate treatment options, verbal abuse of members who don't toe the official line, incorrect information, people being booted from the group for being suicidal (CH are nicknamed "SUICIDE headaches), and more.

Furthermore, I was told directly by a former board member that they work hard to clear out negative comments from this space, creating a really stilted impression of what they do. For every person they have helped, it seems they have booted three more. There are no firm guidelines on what will get you kicked out; it is purely at the whim of the board. This is their prerogative, but it's also something I feel that incoming members should be aware of.

Cluster patients need all the help they can get. There are other places to find it if you have found yourself at the bad end of this group, which it seems so many do eventually. One thing that has amazed me is how many long-time group members and even board members ultimately come to see it as a really toxic place.

Undoubtedly, they have helped people. For myself and others I know with cluster headaches, the excess stress this group causes along with its unwillingness to discuss legitimate treatments that fall out of their "approved" list, make it wholly not worth the trouble.

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!