Purple Kilimanjaro: Taking Epilepsy Awareness to New Heights


TYPE
: Documentary Feature
GENRE: Documentary
STATUS: Production

LOGLINE

Purple Kilimanjaro follows the seemingly Sisyphean efforts of Eric Miller to change the international cultural awareness of Epilepsy and SUDEP, A disorder that killed his wife Carolina in 2011 at twenty-six. Eric’s climb of Kilimanjaro will be paralleled with struggles of those dealing with extreme cases of Epilepsy Spectrum Disorder.

SYNOPSIS

BrainQuake FIlms LLC is creating a new epilepsy awareness program called My Curious Condition: Living with Epilepsy. It will be a website dedicated to information, documentary experiences and social networking around the lives of people with epilepsy and their loved ones: their hopes, fears, concerns and how the negotiate a world very differently than the average person. Purple Kilimanjaro: Taking Epilepsy Awareness to New Heights which we are submitting this grant proposal to you for funding is our flagship documentary project.

The Story

Eric MIller’s wife, Carolina Barcelos Carneiro de Oliveira Miller died as a result of Sudden Unexpected Death in Epilepsy (SUDEP) in August 2011. She was only 25. Like many, Eric wasn't aware that epilepsy could be fatal. Carolina had been diagnosed with epilepsy in her teenage years and took medication daily to suppress her seizures. During the 6 years they were together, Carolina only had two seizures, with one being fatal. Since this tragedy, Eric has been working tirelessly to raise epilepsy awareness in Carolina's honor as well as for all those living with or lost to this awful spectrum of disorders known as epilepsy.

While more people die from epilepsy related causes (50,000 people in the US alone) every year then from better know conditions like Breast Cancer (39,920 in the US), epilepsy is hardly a blip on the radar of public awareness. Breast cancer was once a little known and under researched problem too and it took the great love that Nancy G. Brinkner had for her sister, Susan G. Komen, to helped bring Breast Cancer into the public eye. Now there are pink ribbons everywhere. By telling Eric & Carolina MIller's story we hope to bring Epilepsy the same greatly needed attention and support.

50,000 people die in the US every year from epilepsy related causes. Recent studies prove that 1 in 26 people will develop epilepsy in their lifetime. One in 10 will have a seizure. These are alarming numbers that need to be communicated to the public at large. Tragically, epilepsy isn't given the proper attention in terms of awareness and research funding. Most people remain sorely limited in their knowledge regarding epilepsy while 65 million people live with it every day. Because of this lack of awareness Eric works daily to change the way the world sees and understands epilepsy. At least two to three times a month He invites 20-40 strangers into his home for house concerts with internationally known musicians broadcast live over the internet so that those who are restricted in travel because of epilepsy can watch at home. These concerts are streamed all over the world and are called Candlelight Concerts for Epilepsy Awareness. He has also recently began a national Inititive called 50 Concerts in 50 States where artists playing all over the country will be sponsoring epilepsy awareness at their events March 22-24th 2013 - including Eric Clapton, They MIght Be Giants, Paula Poundstone and many more. Eric does all this in the name of raising awareness and spreading facts about epilepsy.

During a recent conversation between Eric and a long time friend who climbs mountains the idea to scale Mount Kilimanjaro blossomed. Eric, as with most of his projects, would only do something like climbing Kilimanjaro to continue his epilepsy awareness efforts. So He will be turning Mount Kilimanjaro purple for epilepsy awareness! Using cinema verite footage of the climb, interviews with participants, and even working collaboratively with animators Purple Kilimanjaro: Taking Epilepsy Awareness to New Heights will bring viewers Eric's experiences and efforts to alter our cultures understanding about epilepsy and honor his wife Carolina.

 

ARTISTIC STATEMENT

Heather MacGibbon (Director /Co - Producer / Editor) is an independent scholar and documentary filmmaker with a Ph.D. from NYU in Cinema Studies and a Certification in documentary production from the NYU Culture and Media Program. She completed several documentary shorts: "Visible Distance" (1996), "Miles from Home ...and Missing Pages" (1997) as part of her Culture & Media Certification. At NYU she studied under the guidance of world class documentary filmmakers and scholars Faye Ginsburg, David & Judith MacDougall, Toby Miller, Chris Straayer, Barry Dornfeld, as well as cutting edge experimental filmmaker Isaac Julien. After completing her certification, MacGibbon worked for Williams Greaves Productions where she was a supplemental camera person, archival researcher and editing assistant on the PBS program "Ralph Bunche: An American Odyssey" (William Greaves Prod. 2001) nominated for the Sundance Grand Jury Prize in 2001. MacGibbon then teamed up with writer Whitney Walker to produce and direct a short expose "Weighing the Risks" (Fiscal Sponsor Women Make Movies 1999) about the heartbreaking impact of the Fen Phen weight loss drug side effects on one family. After taking time off to publish her dissertation, Screening Choice: The Abortion Issue in American Film 1900-2000 (Verlang 2009), she returns to the production world with this mixed media web series and feature documentary.

 

KEY CREW

Heather MacGibbon - Director / Editor

 Heather MacGibbon is an independent scholar and documentary filmmaker with a Ph.D. from NYU in Cinema Studies and a Certification from the NYU Culture and Media Program. She completed several documentary shorts: "Visible Distance" (1996), "Miles from Home ...and Missing Pages" (1997) and "Weighting the Risks" (Fiscal Sponsor Women Make Movies 1999). She was also a camera person and production assistant on the PBS program "Ralph Bunch: An American Odyssey" (William Greaves Prod. 2001). After taking time off to publish her dissertation she returns to the production world with this mixed media web series and feature documentary.

Matthew MacGibbon - Multimedia Producer / Co-Director

 Matthew MacGibbon is a senior programmer at a New York based financial firm designing websites and software. While working for RGA and Prodigy, Matt was diagnosed with epilepsy. Only after his first grand mal seizure at age 22, did he finally have an explanation for his mysterious childhood and teenage illness which caused missing time, muscle jerks and moments of 'spacing out'. He is now teaming with his documentary filmmaker / wife Heather to develop a web series and feature documentary about the unusual experience of the world faced by those like himself. Inspired by the graphic novel work of David B.'s "Epileptic" (La'Asociation 2005) he is designing the website for "My Curious Condition: Living with Epilepsy" which will combined animation, and live footage to be displayed as a web series in episodes prior to it's final editing into a feature length film.

Tania Van Bergan - Producer

 Tania has worked on programs for Nickelodeon, PBS, Discovery, National Geographic and the History Channel. She is currently a Science Producer at the American Museum of Natural History, and has directed pieces ranging from the Bronx River clean up to a cosmic microwave telescope at the South Pole. Her recent films include SOFIA: Stars and the Space Between, Learning from Lyme, and The Ecology of Climate Change. Tania enjoys engaging young people, has mentored students at Reel Works Teen Film making. She is currently developing a curriculum that uses science journalism to intrigue students with the scientific process.As an avid hiker and experienced international producer she is key in planning for the shoot on Mt Kilimanjaro in Tanzania.

Ayaz Asif - Director of Photography

 Ayaz Asif (Still Photographer / Director of Photography) is an up and coming still photographer whose subject matter is primarily nature and travel. Asif dabbles in everything which most recently includes experimenting with new technology and ideas like motion controlled timelapse. His philosophy in approaching any subject matter is to do as much research as possible on it before getting to a location or taking any photos. As he says, “In my experience, the more you know about the subject the better you can approach it and anticipate those special moments to capture. In a large part photography for me is really about creating the best opportunities for yourself.” Over the years Asif’s work has won photo competitions, and been published in magazines, books, as well as travel brochures. He has also sold his work through collections I on display in several galleries.

 

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Raised
$1,480
Goal
$60,000
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8 Donors have supported this film

ACCOLADES

-
IFP Fiscal Sponsorship Program 2017

 

UPDATE - August 14, 2013

 So thanks to a successful Indiegogo Campaigne and several IFP donations Eric Miller and our Director of Photography have set off to Kilimanjaro. 

Matt and I spent Monday night with Ayaz packing and repacking his camera equipment, making last minute runs to B&H and charging every battery we could before we took Ayaz to meet Eric at the Newark Airport yesterday for the first leg of the flight to Tanzania. 

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