This year’s conference in Chicago was both a huge success and an exercise in adjustments on the run for all the volunteers and especially conference coordinator Eileen Brewer.
We had a sell-out crowd with over 200 attendees from 6 different countries. With the standing room only crowd, we had to make some adjustments on side sessions and increasing the size of the main meeting room.
The President’s reception on Thursday night went very well. The increased attendance was handled well by all the volunteers running registration. There were many 1st timers arriving and everyone tried their best to welcome them and make them feel at home. The main purpose of the reception is to give people a chance to meet new friends and rekindle old friendships. I want to thank everyone that was trying to greet the newcomers. The reception allows people to settle in, meet people and register before the conference presentations begin.
Remarks to follow on portions of the schedule as the weekend proceeded.
September 15, 2017
Eileen Brewer opened the conference with an inspiring presentation that would set the tone for the conference. Thank you Eileen for your opening remarks. Well done.
Introductions with Ainslie Course
Standing in for Dan Irvin, who could not make the trip this year due to illness, Ainslie Course did a wonderful job facilitating one of the most important parts of our program. Everyone in the room had a chance to introduce themselves and to give a little background information. People may discover neighbors they didn’t know they had or find an instant cluster connection with someone living 4000 miles away. This is an important part of welcoming everyone into the family. Well done Ainslie.
Throughout the rest of the conference, Ainslie did a wonderful job as MC and kept us on time and with a very good flow for the program. This is not an easy task and Ainslie did a remarkable job.
Presentation: Bringing You Up to Date
As we had such a full schedule this year, there wasn’t a lot of time available to detail a lot of what has been happening this year. I can now give more details on some of the items I was able to highlight during the conference.
This year, 2017 marked 15 years since Clusterbusters was formed to advance research and became the year that we finally reached our goal of our original mission and that Clusterbusters was founded upon. Our research that began at Harvard has finally admitted the first cluster patient in an FDA approved clinical study looking at treating clusters with psilocybin. It took 15 years of dedication by a lot of people but we finally reached our initial goal.
An ironic part of the story is that we had always been told that the government would never let us do this study and they would block us at every turn. It turns out that the study is being done at a Veterans Administration research hospital. This is what happens when you won’t take no for an answer. Not only are they allowing us to conduct the study, they are supplying the facility. This study, in partnership with Yale University and with the help of additional funding, is history making. With Dr. Emmanuelle Schindler as the principle investigator, the first person in history was given FDA approved and legally permissible psilocybin to treat cluster headaches in the USA. Truly, patient number 1.
Additional updates follow.
We had 11 sponsors this year, our biggest contingent yet, and their contributions were many and very much appreciated. Not only were they all there to help educate the community on different treatments and treatment facilities, they were also there to let everyone know of all the opportunities available for working on advocacy, research and education. It was impressive to see so many people working for our community.
The sponsors financial contributions all go toward making the conference the special experience that it is for everyone. We are able to keep costs as low as possible for people to attend the conference. Registration fees do not cover anywhere near the costs per person, and our sponsors allowed us to cover these additional costs and also offer travel scholarships. We were able to help more people than we’ve ever been able to help in previous years to attend. Without our sponsors, 20-25 people would not have been able to otherwise attend the conference.
Our conference is a unique opportunity for our community to meet these companies and organizations and teach them who we are, what we need and help them understand how cluster headaches affect the families that deal with them. Unlike most conferences of this type, Clusterbusters keeps the sponsors in the meeting space along with the attendees so they can learn about clusters and more importantly the people that make up our community. We feel it is vitally important that when our sponsors go back to work after the conference, they can put a face on the people and families they are working to help. The Clusterbusters community is not sitting back and waiting for help from others. We are a vital part of the process and involved from the beginning.
Opportunities to help our community
We had two separate areas at the conference where people could participate in genetic research for cluster headaches. Dr. Shapiro and his crew were collecting blood samples and DNA for their genetic study and many people took part. Dr. Burish was also collecting DNA data and information.
This was an exciting opportunity for people to take part in important clinical research while at the conference. Thank you to everyone that took this opportunity to move this research forward. Hopefully in the not-to-distant future, generations of people will no longer have to worry about cluster headaches. There will be a cure and it is research such as this that will produce that cure. Pieces of the puzzle were put together at our conference and each year the community fits together more of the most difficult pieces.
I was very happy to be able to announce some of our new partners that we are working with to improve and fulfil our missions of advocacy, education, awareness and research. We are building a team and making Clusterbusters and entire the cluster headache community a vital part of improving the lives of everyone suffering with headache disorders. These affiliations make our voice louder, opens up more doors and increases the size of our footprint. They broaden our reach into the medical community and help us teach the general population about cluster headaches. Our room full of cluster advocates is an impressive sight and everyone there is doing great work for the community. We are finding new ways to educate the medical community as well as other organizations that can help the cluster community. We are making sure that our community is taking an active role in all aspects of the health care system and making a difference.
The current list of our affiliations is as follow:
AHDA – Alliance for Headache Disorders Advocacy
AHMA – American Headache & Migraine Association
HMPF – The Headache and Migraine Policy Forum
AFPA – Alliance for Patient Access
CHAMP – Coalition for Headache and Migraine Patients
NORD – National Organization for Rare Diseases
HCNE – Headache Cooperative of New England
US Pain Foundation
NHF – National Headache Foundation
Migraine World Summit
M4M – Miles for Migraine
AHS – American Headache Society
RPV – Rare Patient Voice
The following list of speakers filled out two full days of presentations that covered new treatments, new research, caregiver stories, advocacy and education events. Presentations were given by the following list of doctors, advocates and experts in various fields.
Dr. Brian McGeeney
Mr. Hans-Joerg Tangermann
Mr. Bill Mingus
Ms. Ashley Hattle
Ms. Katie Golden
Dr. Robert Shapiro
Dr. Larry Schor
Dr. Alexander Feoktistov
Mrs. Erika McDermott
Mr. Dan Duhart
Dr. Mark Burish
Dr. Emmanuelle Schindler
Mr. Kevin Lenaburg
Detailed reports of the presentations will follow soon. We will also be releasing videos of many of the presentations shortly.
In addition to the presentations there were many other things going on throughout the weekend. We had two focus groups, “Safe Room” sessions for both sufferers and caregivers, 02 demonstrations, raffles and auctions, discussion and Q & A panels, scientific poster presentations, book signings and even a magician.
Beginning a few years ago, Clusterbusters started giving out special awards to people or organizations that make a major contribution in advancing our mission and improving the lives of the people in our community. It is never an easy decision making our choices for the awards as there are a lot of good people doing great work. This year’s award recipients were:
Excellence in Research 2017
Dr. Mark Burish
Mark is currently assistant professor of neurosurgery at UT Houston where he performs research on cluster headache. He also treats patients with a variety of pain and headache conditions. During our conference Mark gave his presentation on a Circadian Study he is undertaking.
Mark is also running a study collecting genetic data on cluster headache patients. This will be an important step toward eventually finding genetically based treatments and a cure in the future. It is a huge step forward for everyone in our community in that we now have incredibly dedicated people working on laying the groundwork to find a cure and not just more treatments for the symptoms we experience.
Mark has become an important voice for us within the medical community specializing in headache disorders. Mark’s work makes sure that cluster headaches are a constant topic of discussion during the professional conferences as well as in the research labs. Thank you Mark.
Excellence in Education 2017
Ms. Ashley Hattle
Ashley started a support group for cluster headaches in Denver in early 2016 which meets every other month. The group is supported by Clusterbusters as a regional support group. Her Denver group has grown from three members to more than 15. She organized the first ever 5K to raise awareness and funding for cluster headaches on June 17, 2017. More than 25 people ran the race and the group was able to raise several thousand dollars for research. All the money raised by Ashley through this event will be used for the psilocybin research project going on at Yale and the Veterans Administration.
Ashley’s Denver group is involved in educating the public and the local Denver medical establishment regarding cluster headaches. Her fundraiser gained a great deal of print and radio airtime educating a wide audience on cluster headaches.
Ashley recently had her book on cluster headaches published and it is receiving great reviews. It is a wonderful teaching tool for patients, caregivers and the general public. Thank you Ashley.
Excellence in Awareness 2017
Ms. Shirley Kessel
Shirley is the President of Miles for Migraine, a non-profit organization that holds fundraising walks/runs in cities across the US with all funds used for research, education and advocacy work for people with headache disorders. They also host educational conferences in these cities as part of the events. They are able to generate a great deal of public awareness and publicity for their events. Miles for Migraine is very much involved in helping organize, support and fund many of the advocacy and education events in which Clusterbusters also participates. Clusterbusters has partnered with Miles for Migraine and will be working with them at their events. Every dollar raised by those people participating in these events for the benefit of cluster headaches, will go directly to Clusterbusters and will be used for our research and advocacy projects.
Working with Shirley and Miles for Migraine, Clusterbusters will be setting up informational and educational booths which greatly increases our outreach to the general public and the medical community. Thank you Shirley.
Excellence in Advocacy
Dr. William Young & The Alliance for Headache Disorders Advocacy
Dr. Young, the current President of the AHDA accepted this award on behalf of the Alliance (AHDA)
Clusterbusters has been a member of and working with the AHDA for seven years. Although the big event is Headache on the Hill which takes place once a year in Washington DC, this work continues throughout the year. One of the most important issues that the AHDA works on is trying to get Medicare and Medicaid to cover the costs of 02 treatment for cluster patients.
The AHDA has had specific legislation passed in congress that helps all people with headache disorders. They have also been able to greatly increase the levels of research funding in several government agencies. Their advocacy work also raises awareness and educates people in positions that can help us.
One of the biggest benefits of Clusterbusters working with the AHDA is the Headache on the Hill event that allows us to bring our cluster advocates together and also train new advocates. HOH is an event that empowers all that attend and allows us to tell our stories and to voice our grievances.
Those of you that join us in DC this coming February will be able to see firsthand the importance of our affiliation with the AHDA. Thank you, Dr. Young.
Lastly, I would like to thank everyone that helped make this conference a success. It takes a lot of work by a lot of people over an 11-month long period to pull it all together and to be prepared for all of the adjustments that take place during the weekend.
I’d like to thank my entire family for all their help and support, my fellow board members Eileen Brewer, Dan Bemowski and Kim Robbins. Eileen gets a special thank you as the event coordinator. Also, none of this would be possible without our volunteers. Thanks go out to Steve & Heather Keschinger, Dick & Bettye Wilson, Mac DuBose, Ashley Hattle, Andrew Cleminshaw, Mark Massulo, Ruthie Harper, Lisa Mingus, and April Mazac.
Thank you also to everyone that donated items to the raffles and auction. We were able to raise a record amount of money with these very generous donations and these funds will go directly toward next year’s conference scholarships.
In 2002, Clusterbusters was formed to take a pro-active role in researching for a cure for cluster headaches and find new and improved treatments.
Eventually, 6 advocates traveled to Boston and met with the administration of Harvard Medical School and convinced them of the importance of this research and they agreed to undertake the first psychedelic research project at their institution in 40 years.
On Feb 9th, 2004, an agreement was signed to begin research at Harvard University, looking at using psilocybin as a viable treatment option providing results far better than anything currently available.
The first published results from this groundbreaking clinical study of this treatment appeared in the prestigious medical journal Neurology in June of 2006. This has been an incredibly long and often frustrating process that included the discovery of BOL-148, starts and stops of every fashion, thousands of people finding relief with various new options and an unending determination to push forward past every obstacle.
The growth of Clusterbusters into an active and successful advocacy group for the entire community, built with contributions from hundreds of people that refused to let the words “can’t”, or “no” stop them from helping others. Along the way we have added some incredibly dedicated advocates, we have lost one of our original research team members, Dr. Andrew Sewell, added extraordinary researchers and headache specialists to our team, overcome those that have tried to stop us and will continue to push forward. There are still doors to be knocked upon, barriers to be overcome and miles to go, but we will not be denied.
Yes, it has taken 14 years, and we have moved locations, but I am both proud and pleased to announce the following IRB approved release:
Adults with chronic cluster headache, age 21 – 65, needed for a research study investigating Psilocybin in the treatment of cluster headache.
ClusterBusters, a non-profit advocacy and education group, is participating in the recruitment of subjects for a pilot study investigating the safety and efficacy of psilocybin in cluster headache. This study is taking place at the Veterans Affairs Hospital in West Haven, Connecticut, an affiliate of Yale University School of Medicine.
Earn $100 per test day. Three test days total.
Call (203) 932-5711, ext. 4335
All calls are confidential
HIC # 1607018057, HSS # DD0063
Biological Studies Unit, VA Connecticut Healthcare System, West Haven Campus
A few details of explanation:
Congratulations and thank you to everyone that has worked so hard for all these years to make this happen.
Have you registered on the Clusterbusters “Patient Registry” yet?
Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure.
By completing this simple form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation. By joining our list you will be kept up to date on all the newest studies and research.
Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process.
This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits.
People from all walks of life, all ages and every description, suffer from cluster headaches.
We are presently involved in several ongoing research projects as well as several others that are in the long process of approval.
As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway.
Be a part of a better future for cluster headache patients and participate in our registry.
As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board.
Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information.
Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at email@example.com and we will mail a written copy for completion and inclusion.
To participate, please go to this link:
Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this year’s conference.
Even if you can’t make the conference, we’d love to have everyone appear on the registry.
I’m happy to present the following guest blog contribution. It’s on a very important topic to many people suffering from cluster headaches. Any time we have the opportunity to present expert opinions on important topics, we strive to bring it to our members and the general public.
Deanna Power is the Director of Community Outreach at Social Security Disability Help, an independent organization dedicated to helping people of all ages receive Social Security benefits. She specializes in helping families determine whether or not they medically qualify for benefits. If you have any questions on how cluster headaches may qualify, or need any additional help, she can be reached at firstname.lastname@example.org.
Deanna’s experience with SSD and also being the supporter of a cluster sufferer makes her uniquely qualified to speak out on the subject. Thank you Deanna for helping us educate and advocate for the cluster headache community.
Cluster Headaches and Social Security Disability Benefits
If you experience cluster headaches, you know how completely debilitating they are. Research is completely underfunded, treatment success completely varies by patient, and the cluster community is wildly underrepresented. I only first heard of cluster headaches once my partner started getting them. Because of the lack of awareness of the severity of the illness, it’s very challenging for people diagnosed with cluster headaches to be approved for Social Security disability benefits. Although challenging, (and frustrating), it is possible.
The First Hurdle to Overcome: 12 Months Disabled
Every disability approved by the Social Security Administration (SSA) needs to last for at least 12 months, or be terminal. The majority (around 90%) of cluster headaches come in “cycles” for sufferers, meaning you can go months or even years without an attack. This limitation is yet another hurdle people with cluster headaches to overcome. If your cluster headaches are not chronic, you will almost certainly not qualify for Social Security disability benefits.
If, your cluster headaches are chronic and you’re constantly plagued by the pain, you have a chance of qualifying for disability benefits.
Medically Qualifying with Cluster Headaches
Every time the SSA receives an application for disability benefits, it will compare your medical records to its own medical guide known as the Blue Book. The Blue Book lists hundreds of disabilities that can potentially medically qualify for benefits, and the exact test results or symptoms you’ll need to be approved.
Cluster headaches are not listed in the Blue Book, which is why it’s so hard for you to be approved. There are two ways you could be approved for disability benefits if your disability is not listed: Meeting another listing, or qualifying through a Medical Vocational Allowance.
Medically Qualifying: Meeting Another Listing
The Blue-Book listed disability that you closest meet with Cluster Headaches is found under Section 11.00, Nonconvulsive Epilepsy.
Before you think “epilepsy, no way,” consider the symptoms required to qualify. This Blue Book listing states that you must experience alteration of awareness or loss of consciousness and “manifestations of unconventional behavior,” or significant interference with activity during the day.
Anyone who’s had a cluster headache or has seen someone have one knows that it’s impossible to do any normal activity until the headache subsides. In addition to the “alteration of awareness,” your headaches must occur more than once weekly, and they must occur despite at least 3 months of prescribed treatment.
This means that if you are not receiving treatment from a doctor, you will not qualify under this listing, regardless of the severity of your headache. If you are receiving treatment, like using oxygen and taking various forms of medications (such as sumatriptan), but you still suffer from at least one cluster headache a week, you could medically qualify under the epilepsy listing.
Medically Qualifying: Medical Vocational Allowance
The second way to qualify for Social Security benefits is by qualifying for what’s called a Medical Vocational Allowance. This allowance is for claimants that do not qualify for disability benefits through the Blue Book, but clearly cannot work anyway. Your best bet of qualifying for a Medical Vocational Allowance is by having a doctor fill out a Residual Functional Capacity (RFC) evaluation on your behalf. An RFC is a questionnaire that helps the SSA see exactly how your cluster headaches affect your ability to work, from your ability to stand, walk, lift weight, and more. You can download an RFC for your doctor to fill out on your behalf online.
Qualifying for a Medical Vocational Allowance will be much easier for people who have dangerous and physical jobs that jeopardize themselves and others if a cluster headache strikes. For example, if an airplane pilot would more likely be approved than a software engineer who works at a flexible company, allowing him to stop working until the headache passes.
Applying for Social Security Benefits
There are a few options available for you when you decide to apply for Social Security. If you’ve worked throughout your life you can most likely apply entirely online. If you’ve never worked or if you haven’t worked recently–such as a young applicant or a parent who took time off to raise a child,–you will need to stop by your nearest SSA field office.
The most important component will be to submit every piece of medical evidence you’ve had. This includes statements from every doctor you’ve seen, all the medications or treatments you’ve tried, and exactly what types of activity you’re limited to. There’s no such thing as adding “too much” information onto your application.
The more you show SSA’s disability examiners how much your cluster headaches affect your life, the better your odds of approval. Some documents and information you should prepare for your application include:
A complete list of what you’ll need to apply can be found on the SSA’s website, within its Adult Disability Starter Kit.
What to do if Your Claim is Denied
Unfortunately, the fact of the matter is that most people are denied benefits the first time around. In fact, only about 30% of applicants are approved initially. If your claim is denied, do not give up on applying for disability benefits. There is a lengthy appeals process available for you, and the majority of applicants are eventually approved after appealing their claims.
The first step of the appeals process is filing for reconsideration. This online form asks the SSA to look at your medical evidence again and revaluate your claim. The majority of reconsideration requests are still denied.
The second step of the appeals process is appealing in court and having an Administrative Law Judge (ALJ) review your claim. This is where most applicants are approved for benefits. In fact, nearly 50% of claimants are awarded benefits at their hearing. The reason for the higher approval rates is because you will be given the opportunity to plea your case in person. Many people have witnesses speak on their behalf during ALJ hearings.
If your disability hearing is denied, it is advisable to restart your application instead of continuing the appeals process. You cannot supplement your appeal with any additional medical information after an ALJ hearing, which makes later appeals nearly impossible to win.
The application process may feel overwhelming at times, but do not give up! If you are able to submit the medical records proving how severely your cluster headaches affect your life, and you know you will not see relief for at least 12 months, you may be financial assistance your family needs.
When I started Clusterbusters, I knew I had chosen a difficult route and uphill battle in getting the things accomplished that so many of us knew needed to get done. If we were going to bring cluster headache treatment out of the 18th century and into the present this was not the easiest path. Making positive changes on a global scale are never easy.
One of the biggest obstacles we had to overcome turned out in the end, to also be one of our biggest helps in bringing about awareness. Psychedelics.
When people questioned their effectiveness or safety, we took the approach of doing more research, providing more evidence & explaining the facts. If people didn’t understand, our job was to educate. If people understood but were afraid, we provided information to help ease the fears. The only way to do this was provide the truth and the facts.
When we put ourselves “out there” and expanded the scope of the conversations, and proved that reasonable people can discuss these options without ending up in jail, our reach grew and we refused to hide facts that could help people in need.
Over the years we have been able to get more press and exposure for cluster headaches and those that suffer, than had ever happened leading up to that point. Although many people tried for years to get exposure in the media, it was never easy to get anyone to listen. We didn’t have Jerry Lewis. We didn’t have what was thought to be “newsworthy” and part of this was also made more difficult because we had all spent years hiding our condition rather than trying to show what was happening or try to explain it to people.
What we did have were psychedelics. What we did have were people that were willing to show themselves in life changing chronic pain and what we had found that could help people.
Whether people like it or not, and some did not like our story, we finally got the attention of the media as well as politicians and the medical community because we were using psychedelics. Now there was a story that news outlets wanted to run. Who are these people that are suffering so much that they would be turning to street drugs to treat their pain. The fact that we were suffering from something nicknamed “suicide headaches” and all the lives that had been destroyed over the years was never enough on their own.
The first front page story in any major newspaper regarding cluster headaches was a story of someone treating their clusters with mushrooms and growing his own medicine.
Almost every headline or TV trailer included the word psychedelics and there have been thousands of them now. The hook was psychedelics but the story was in the people. The story was what we were all living with and what we were trying to do on our own because the system wasn’t being of much help.
The first “doctor” to prescribe psychedelics for cluster headaches was done on national TV for all the world to witness. Magic Mushrooms (psilocybin) were used to treat cluster headaches on an episode of House. This was the first time clusters ever made their appearance on television and described as a serious condition.
When the producers of the show were contacted, they informed us that they had taken their information and developed their storyline based upon the information on our website. They then followed up this original story with another along the same lines when they had Dr. House treat his migraine headaches with LSD.
When the facts were put out there, the medical community could not run from the facts. As more and more stories went out and people went public, they could not ignore the facts of the molecular similarities between what we were using and having success with, and the chemical activities in our brains. As more and more discussion occurred, more and more doctors and researchers agreed that it was understandable that these substances would work.
In many cases, our hook was the psychedelics but in the end, the stories most often centered upon the people and the condition and either didn’t focus on the psychedelics or completely ignored the psychedelic angle and the facts about the people and what clusters do to people, was all they needed for their story. Psychedelics may have opened the email or enticed someone to answer the phone, but it was the stories of strength and survival that would become the news.