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.