11th Annual Clusterbusters Cluster Headache Conference

September 15 ­ 18, 2016Austin, Texas

Holiday Inn Austin Midtown

Conference Syllabus

Presentations by:

Dr. Brian McGeeneyMr. Pete BatchellerDr. David WatsonMr. Dan Ervin

Dr. Joanna KempnerMr. Mitch PostDr. Larry Schor

Mr. Brendan BurnsDr. Emmanuelle Schindler

Mr. Eric DiamondDr. Melissa Rayhill

Bob WoldMr. Tyler Mann

Dr. NagyMs. Ainslie Course

And:Q&A Panel led by Dr. Brian McGeeney

Breakout Sessions:O2 Use Demonstration

Growing Medicinal MushroomsATI Focus Groups

Schedule:

Thursday September 15

18:00 President's Reception18:00 Registration Opens

Friday September 16

8:00 Registration Opens

9:00Opening of Conference ­ Announcements, Information

9:15 Introductions with Dan Ervin10:00 Bob Wold, President, Clusterbusters Inc. Bringing You Up to Date10:45 Break

11:00 Dr. Brian McGeeneyCluster Headache and Patient experience with Treatment

12:00 Eric Diamond Inspiration Austin12:30 Clusterbusters Lunch13:30 ATI Focus Group until 2:3014:00 Breakout session Growing Medicinal Mushrooms

14:00 Breakout session ­ Bill Mingus

Oxygen ­ Making It Work For You. A Hands On Demonstration and Discussion

14:30 Pete Batcheller Anti­inflammatory Regimen15:15 Break15:30 Dr. Larry Schor Psychological issues

16:15 Brendan Burns

Dissociative inspiration: How I reclaimed my life through dissociative hallucinogens

17:00 Raffle and Auction17:30 End of Day Announcements19:00­20:00 Dr. Larry Schor

Break Out Session ­ Supporters Only Safe Room Meeting

20:30­21:30 Dr. Larry Schor

Break Out Session ­ Clusterheads Only Safe Room Meeting

Saturday September 17

8:00 ATI Focus Group

9:00Day 2 Conference Announcements and Information

9:15 Dr. David Watson Doctor/Patient Communications10:00 Clusterheads Film Trailer10:15 Ainslie Course Inspiration Austin10:30 Group Photo10:45 Break

11:00 Dr. Joanna KempnerTransforming Psychedelic Medicine and Ending Prohibition

11:45 Dr. Melissa Rayhill Questionnaire on use of placebo12:00 Dr. Jim Nagy ATI Update12:30 Lunch Break14:00 Dr. Larry Schor14:30 Dr. Emmanuelle Schindler Update on Psilocybin Study15:15 Break15:30 Mitch Post 5­MeO­Dalt16:15 Panel17:00 Auction/Raffle17:15 Mr. Bob Wold End of Conference (45 Minutes)18:30 Clusterbusters Poolside Dinner

7:00­8:00 PM Dr. Larry Schor

Break Out Session ­ Open Safe Room Meeting

Sunday September 20th

7:00 Optional Farewell Breakfast ­ Not supplied by CB

Speakers:Mr. Dan Ervin

Dan is a 58 year old man who has experienced chronic cluster headaches since the onset of the disorder 13 years ago. He has tried most every medication available and every surgical procedure short of deep brain stimulation. Known as “Hollywood” among the cluster headache community, Dan volunteered to host a National Geographic film crew from London to document

his use of mushrooms to successfully treat cluster headaches. This year he is our awesome MC.

Dr. Brian McGeeney

Dr. Brian E. McGeeney is a neurologist at Boston Medical Center and full time faculty (Assistant Professor of Neurology) at Boston University School of Medicine. Dr. McGeeney is a Diplomat of the American Board of Psychiatry and Neurology, with the added qualification of Pain Medicine. Dr. McGeeney is also boarded by the American Board of Pain Medicine and holds the United Council on Neurologic Subspecialties board in Headache Medicine. He is also the associate editor of the journal, “Headache”. Dr. McGeeney is our keynote speaker and he will be speaking about patient experience with treatment.

Mr. Eric Diamond

Eric Diamond, MS.Ed, L­BCBA, has been a licensed therapeutic service provider for more than 20 years, working with individuals diagnosed with Autistic Spectrum Disorders and related disorders. He has also treated individuals with anxiety disorders, rumination disorders, conduct disorders, amongst others.

Mr. Diamond received his MS.Ed. in Special Education with a specialization from Long Island University's C.A.S.E. program and is a Licensed and Board Certified Behavior Analyst. His clinical interests center around challenging behaviors, effective teaching strategies, inclusion, and most importantly teaching independence/adaptive living skills to the individual and addressing the needs of families of individuals with autism and related disorders.

Mr. Diamond has been a founder of multiple schools for children with developmental disabilities, diagnostic and treatment centers, consulted for scores of school districts throughout the New York Tri­state area and lectured, while having multiple headache types including Chronic Cluster Headaches. He is also cancer survivor and stroke survivor.

Using the principles and techniques that he studied and practiced professionally, he has applied them to his arsenal in coping with the pain that so many of us have.

Mr. Bill Mingus

Bill is a long time veteran of cluster headache. He has been active in the online community and was a member of OUCH USA for many years. Considered by many as an expert on the use of oxygen in the management of cluster headache, Bill will share his knowledge during our lunch session “Oxygen ­ Making It Work For You. A Hands On Demonstration and Discussion.” This will be an opportunity to learn more about oxygen use including tips and tricks to optimize its effectiveness.

Mr. Pete Batcheller

Pete Batcheller is a retired US Navy Commander and fighter pilot with over 3,000 hours flying Navy fighters. He has a degree in Chemistry and over 15 years training in Aviation Physiology and oxygen breathing systems. He is also a 20 plus year cluster headache sufferer, chronic since 2004. He holds a patent as a co­inventor for a method of oxygen therapy as a CH abortive

using an oxygen demand valve to rapidly and reliably abort cluster headache by hyperventilating with 100% oxygen. In his capacity as President of Clusterache Inc., he is in direct contact with over one hundred new CH’ers a year providing information on oxygen therapy and the anti­inflammatory regimen.

Dr. Larry Schor Ph.D.

Dr. Schor is a Professor of Psychology at the University of West Georgia and a licensed psychotherapist. He is a Licensed Professional Counselor and Certified Professional Counselor Supervisor in Georgia. His research, teaching, and practice focus on the psychological effects and treatment of trauma. He is particularly interested in states of consciousness associated with trauma and pain; especially alterations in consciousness associated with cluster headaches. Dr. Schor’s presentation will focus on a new study focusing on better understanding and describing the nature and severity of Cluster Headache pain, suicidality, personal burden, access to effective treatments, psychological needs, and disability. He will introduce the new survey, which can be accessed at www.clusterheadache.center. Additionally, he will be facilitating three therapeutic “safe room” groups. The first is for supporters, the second for sufferers, and the third will be an open group for any attendees who wish to participate.

Mr. Brendan Burns ­ AKA RicardoBrendan Burns grew up in Western Massachusetts and received most of his education from the Quabbin Reservoir and The Earthlands Environmental Preserve in Petersham MA. He is a long time percussionist and brewer and enjoys getting out into the foothills of the Berkshire mountains whenever he can. Brendan has been a cluster survivor for twenty years now and has been researching the use of psychedelics for cluster headache for almost as long. Right now he lives in the mountains of Ashfield Massachusetts, surrounded by the people and animals whom he dearly loves.

Dr. David Watson

Dr. David Watson is a board certified neurologist in Morgantown, WV. He works with patients whose issues relate to the nervous system, such as epilepsy or Parkinson's disease and specializing in treating headache disorders.

Dr. Watson graduated from the West Virginia University School of Medicine in 1999. He works in Morgantown, WV and 1 other location and specializes in Neurology. Dr. Watson is affiliated with United Hospital Center and West Virginia Ruby Memorial Hospital.

Dr. Watson is actively involved in AHMA and AHS and is the founder of “Running for Research” which is a fundraising event for headache research, held in several states.

Mr. Tyler Mann

Tyler Mann is a documentary filmmaker out of Austin, Texas, specializing in documentary work ­ but is also well­versed in fictional narrative style. Born and raised in a small town in Oklahoma, just north of the Texas border, Tyler had dreams of making it into the film industry in Hollywood.

Nearly ten years ago, an invisible and debilitating disease threatened to derail Tyler from seeing his dreams come to fruition. Suffering from sudden onsets of excruciatingly painful headache episodes, he researched, self­diagnosed and finally headed to the emergency room ­ where he was shocked to learn the doctor had never heard of cluster headaches. Since then, Tyler has been on a mission to bring awareness to the disease.

He has made his dream happen; he's in the film industry. He shoots and directs TV shows and films. His work can be seen on A&E, TLC, The History Channel, Animal Planet, The BBC, Nat Geo, CNN and more.

As a filmmaker, Tyler doesn't let the headaches define him. He lives them every day ­ but it isn't who he is or how he wants to be known. So now comes the hard part for Tyler; to tell the story of what it's like to wonder everyday when the next cluster will hit; what it's like to live in your bathroom, pounding anything from ice and oxygen to pharmaceuticals and mushrooms into your brain, just to make the pain go away. At some point you stop caring about life and all that matters at that moment is what will make the pain stop.

Though a seasoned television cinematographer, this is Tyler's first time directing a documentary feature. It's his chance to tell stories that can save lives. Many Cluster Headache sufferers are dying. They are looking for a solution, an outlet, a voice ­ and Tyler realized he has the ability to make a change and become that voice.

Tyler will be discussing the cluster headache documentary that is in production and he will be conducting interviews during the conference with those attendees that are interested in taking part.

Mrs. Ainslie Course

Ainslie Course is an experienced nurse practitioner specialising in Oral and Maxillofacial surgery.After gaining her Bachelor of Science degree from The University of Guildford with distinction in nursing, she enjoyed many years assisting some of the finest surgeons in Europe and went on to lecture in hospitals and clinics throughout the United Kingdom.

Ainslie has a passion for fashion and has built up a small online business and enjoys modelling for a live TV talk show on Scottish television. She is currently working on expanding her business and hopes to fulfil her dream of opening her own independent boutique in 2017.

Ainslie married in 1990 and spent 12 years living near Windsor, England. She is mother to a daughter Francesca ,25, who is a primary school teacher living in Milan, Italy and a son Thomas , 18 , who has just left school and plans to take a year out before studying for an engineering degree in 2017. She returned to her hometown of Glasgow, Scotland in 2001 where she still resides.

Dr. Joanna Kempner Ph.D.

Joanna Kempner, an associate professor of sociology at Rutgers University and an affiliate of Rutgers’ Institute of Health, Health Care Policy and Aging Research, studies the politics of medicine, science, gender, and the body. Her first book, Not Tonight: Migraine and the Politics of Gender and Health (Chicago 2014), asks why doctors, policymakers and employers don’t

take headache disorders like migraine and cluster headache seriously despite the fact that they are prevalent, disabling, and costly. Prof. Kempner has also published widely on the politics of “ignorance,” for example, the effects of drug prohibition medical research. Given these two areas of interests, Kempner is uniquely qualified to talk about the sociological impact of Clusterbusters’s work on psychedelic medicine. In this talk, Prof. Kempner will share what she has learned from analyzing the archives of Clusterbuster’s early online discussions about psilocybin and discuss how “underground” research collectives, like Clusterbusters, are transforming psychedelic medicine and ending prohibition.

Dr. Melissa Rayhill

Dr. Melissa Rayhill graduated from SUNY Buffalo School of Medicine and then completed her residency in Neurology at Boston University Medical Center, where she was chief resident and trained under Dr. Brian McGeeney. From there, she completed a fellowship in Headache Medicine at the John R. Graham Headache Center at the Brigham Faulkner Hospital in Boston, MA, where she trained under Drs. Elizabeth Loder and Paul Rizzoli. Since completing fellowship, she is now an assistant professor of Neurology and is developing a new Headache Medicine program at the University at Buffalo School of Medicine, The State University of New York (SUNY Buffalo). Her most recent research interests include trial registration compliance and research ethics in Headache Medicine.

Dr. Abraham J. Nagy

Dr. Nagy is the Director of the Nevada Headache Institute In Las Vegas, NV and is a board certified Neurologist and board certified Headache Specialist in Las Vegas. He received his bachelor’s degree in Neuroscience from Columbia University and his medical degree from the University of Nevada School of Medicine.Dr. Nagy completed his internship in Internal Medicine and Residency in Neurology at Yale University and obtained his Fellowship at the University College of London, Institute of Neurology, Queen Square London. He was the Clinical Director of the Headache Department at the University of California, San Francisco in the department of Neurology and is currently Chairman of Neurology at the University of Las Vegas. Dr. Nagy is a member of the American Academy of Neurology, the American Headache Society and the International Headache Society. He serves on several American Headache Society and American Academy of Neurology special interest sections and he is also an invited reviewer for the journals Cephalalgia and Headache. He has won several prestigious awards for his work, including the Clinical Headache Fellowship Award from the American Headache Society.

Dr. Emmanuelle Schindler

Dr. Schindler is a research fellow at VA Connecticut Healthcare. She is a graduate of Neurology Residency at Yale School of Medicine and received a B.S. in Biological Psychology at the College of William & Mary in 2003, graduating Summa Cum Laude. She received her MD and PhD in Neuroscience from Drexel University College of Medicine. She has won several awards and honors including the American Academy of Neurology Award, Excellence in Neurology in May of 2012. She has numerous publications. Dr. Schindler will be giving us an update on the psilocybin study at Yale that will soon be recruiting participants.

Mr. Mitch Post

Mitch Post is a cluster headache patient from Pittsburgh, Pennsylvania. He began doing scientific research after several years as a chronic clusterhead with no relief from conventional medicine. In 2013, he began initial research on 5­MeO­DALT as a treatment option, publishing the results in 2014, and presenting this new treatment option at last year's Clusterbusters conference. Now living pain­free for nearly three years, he will be leading a discussion on inspiration through citizen science, education, and the future of independent cluster headache research.

Mr. Bob Wold

Bob, 62 yrs of age, has been married to his wife of 42 years and together they have raised 4 children and are currently the proud grandparents of 6 grandchildren.He was diagnosed with Cluster Headaches approximately 35 years ago which eventually lead to his founding of the non­profit organization Clusterbusters, Inc. in 2002. Since that founding, Clusterbusters has grown to the largest cluster headache support organization in the U.S. Clusterbusters work in advocacy, education and research has made great strides in advancing these goals through the dedicated and passionate work of its many volunteers.

While raising his family, Bob spent 25 years as a youth sports coach for both boys and girls and spent several years as the President of one of the largest and most successful youth baseball leagues in the state of Illinois. Bob and his family also owned and operated a sports memorabilia store for many years in his home town of Lombard, Illinois.Bob began his employment career in the field of mechanical engineering. His work included designing everything from ICBM guidance systems to early versions of ATM machine mechanisms. Many of his designs are still in use today, ranging from one of the first soft serve ice cream machines to slot machine mechanisms.

Bob eventually moved on to a family run construction business and continues today working full time in the construction industry. Bob continues a long line of master carpenters in his family.

In addition to his work as founder and President with Clusterbusters Inc., Bob sits on the Board of Directors of AHMA (the American Headache and Migraine Association) and AHDA (the Alliance for Headache Disorder Advocacy) AHMA is a patient organization representing the 36+ million headache patients in the U.S. and is affiliated with the AHS (American Headache Society). Clusterbusters is one of 13 non­profit and professional organizations belonging to AHDA and Bob’s responsibilities as a board member of this organization include legislative initiatives and organizing events for patients and medical professionals in Washington DC.Bob’s work with Clusterbusters, along with his board of directors and scores of committed volunteers, has included research projects at institutions such as Harvard, Yale and McGill Universities. His advocacy work through various media outlets includes many appearances in Newspapers, radio and TV interviews and many presentations at professional conferences.

Clusterbusters brings awareness and understanding of cluster headaches through such projects such as two National Geographic documentaries, TV & Radio, magazine articles and web based news outlets. Educating the medical community, the patient community and the general public has been an important mission for Clusterbusters and can count many successes along the way.

Mrs. Eileen Brewer

Eileen is currently a stay at home mother to a 4 year old girl and a one year old boy. She also manages several real estate investment properties. Eileen has devoted herself over the years to many volunteer opportunities including local and national political initiatives, event planning and advocacy for several local charities, different positions on boards of directors for a few 501(c)3s, and now Clusterbusters as the Conference Chair.

In 1980 at the age of 5, Mrs. Brewer contracted spinal meningitis and after fighting for her life she was left with some disabilities. 'Headaches' is just one of those issues. Eileen has had a few periods of relief but none have lasted more than 6 months. Most of her life has been about this condition and the struggles with it and she wants to make life better for patients until we can find a cure or at least better treatments for this disease.

Q&A Panel

Our panel of experts will help summarize the topics discussed throughout the conference and we will open it up to the audience for any questions they’d like to ask. Whether it was discussed at the conference or it’s something new, this is the time to get answers to the questions you may have about clusters, treatments, or living with cluster headaches.

Special Thanks To Our Conference Sponsors:

Special Thanks To Our Conference Sponsors:

Special Thanks To Our Conference Sponsors:

https://www.rarepatientvoice.com/sign‐up/ Patients and caregivers receive a $5 gift cardif you qualify. We are currently in search of allconditions, disorders, diseases and syndromes. Over $1,000,000 paid out for participating inSurveys in the past three years. Join us today!

We would also like to extend a heartfelt thanks to all of those of you who donated to our scholarship fund. Your contributions helped more than 10

people attend who would not have been able to otherwise. We are grateful for your support. We would also like to thank everyone who has volunteered to help make this conference the special experience it is. We could not have done

this without you!