"Clusterheads" Documentary Gains Momentum
In 2015, I reported on the start of a new documentary, following multiple individuals with cluster headache disease. I recently caught up with filmmaker, Tyler Mann, and producer, Cindy Reynolds, to get an update on the progress of “Clusterheads.”
“Clusterheads” aims to show the raw reality of living with cluster headache disease through the eyes of several patients who have allowed their lives to be followed. Tyler says he hopes the film will educate others about this misunderstood and often overlooked disease. Ultimately, he wants the film to be a catalyst for the government to increase research funding, which is basically non-existent in the current National Institutes of Health (NIH) budget.
Cluster attacks are often referred to as the most painful condition known to man. Roughly 400,000 Americans experience cluster headaches, with the large majority of the population being male. The suicide rate among those afflicted with this disease is 20 times the national average.
“Clusterheads” is currently in production. Tyler, a cluster patient himself, works on the documentary when his regular busy schedule allows. His day job as Director of Photography for popular TV shows on A&E, TLC, CNN and National Geographic keep him very busy. There is no set date for the release of “Clusterheads.” Tyler says the stories of each person will take time to create. Filming takes place during some of the darkest moments of people’s lives, a process that doesn’t line up with putting the project on a strict timeline.
However, the documentary is gaining momentum due to several notable events.
Legacy of an advocate
John Fletcher founded the Cluster Headache Foundation in 2012 to provide support and education to those with cluster headache disease, as well as all headache disorders. John’s vision was to help fund research for cluster, also called Trigeminal Autonomic Cephalagia (TAC).
John has been an inspirational advocate for the cluster community. Sadly, John’s health has prevented him being active in the organization he founded. He is currently in hospice care due to complications from COPD.
John wants his legacy of education and advocacy to live on. In that spirit, John Fletcher and his family recently gifted $6,000 to be used towards production of the documentary. John’s generous donation will go a long way in covering expenses. Since its inception in 2015, the film has mostly been funded through donations from fellow patients. This gift will double the total amount of funds raised to date for the documentary.
“As a producer, I look at the meaningful collaborative relationships among the patient community, and over time they unfold. It’s indescribable and it is the fuel for our mission. John’s gift touches upon the heart of this because the documentary is a passion project. His passion, our passion. It is what propels us forward to tell the stories,” says producer Cindy Reynolds.
“Clusterheads” awarded 2nd place in migraine moment contest
Tyler has completed one trailer and several scenes based on footage gathered to date. One scene shows the bone-chilling pain one man experiences during a cluster attack. The attack occurs during a cluster headache conference and shows how the community comes together in that moment to provide their support and resources to their fellow “Clusterhead.” The segment also addresses the access to care issues that cluster patients face.
This glimpse into an attack, titled “Tommy,” was submitted to the Migraine Moment video contest during Migraine and Headache Awareness Month in June 2017. “Clusterheads” won 2nd place and a $1,000 award. This recognition of the project’s mission validates the need for these stories to be told.
Filmmaker lends his voice to the cause
“Clusterheads” filmmaker, Tyler Mann, spends most of his time behind the camera, trying to capture stories of fellow patients, yet he’s not afraid to share his story as well. His own battle with cluster disease and seasonal attacks has been featured recently in two publications. Tyler is dedicated to breaking the social stigma surrounding cluster headache disease, while also providing hope to fellow patients.
Vice News, a national platform known for their cutting-edge news coverage, featured Tyler in an article about alternative, experimental treatments being used by some in the cluster headache community. He also discusses his experience with Headache on the Hill, an annual advocacy event in Washington, DC that gives patients a chance to meet with their congressional representatives to lobby for more funding and research for all headache disorders. In his interview, Tyler states that cluster headache, “is not a public-facing disease. It’s very much in the closet.” Having Vice News cover cluster headache disease is another step in bringing the darkness of cluster into the public eye.
Tyler was one of ten patients asked to participate in the INvisible Project: Migraine Edition, which debuted in June. The INvisible Project is a magazine, supported by the U.S. Pain Foundation, dedicated to making invisible illnesses more visible to the public by sharing stories and pictures of those who make the best out of life, despite their disease. In his feature, Tyler encourages others to “do what you have to do to survive,” because no one should have to suffer with the tremendous physical and mental anguish that comes with having cluster disease. He also opens up about his own struggles with suicidal thoughts. No subject is off-limits due to his commitment to “show it like it is.”
Out of all of these accolades, Tyler and Cindy are most humbled by John Fletcher’s generous gift to the “Clusterheads” project. They are determined to continue his legacy through the film. I look forward to sharing more updates on the “Clusterheads” documentary as the film continues to progress.
Learn more about the Clusterheads project and watch here.
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