Mito-Kids

This is a repost from

http://documentarytech.com/?tag=marc-dole

Marc Dole’s documentary, in the beginning, was done on doctor’s orders.

His daughters had been suffering seizures, and the doctors were trying to determine what was causing them. Because Dole was a video professional – his New Hampshire-based Hatchling Studios specializes in animation and postproduction – he had access to video equipment.

“We knew our kids were having medical issues. Seizures, and one of the kids had diabetes, then we found out the twins had diabetes… there was a lot happening, and the doctors had no idea what was going on.

“One of the neurologists said to me, ‘Why don’t you have any videotape of the kids having seizures? I need to see it – every time they come into my office they’re happy, and fine.’ She was very adamant I get these things on tape,” says Dole, whose documentary “Mito-Kids” has grown directly out of that.

The film, which is still an evolving work as the Dole family confronts the medical issues as a family, has also been a work intended to bring awareness of mitochondrial disease, “a chronic, genetic disorder that occurs when the mitochondria of the cell fail to function properly. This is an intimate and personal story that aims to increase the understanding of mitochondrial disease and its connection to epilepsy, diabetes, ALS, Parkinson’s, Alzheimer’s, Heart Disease and many other neurological disorders.” Dole’s four daughters (Britney, Nikiya, Ashley and Alyssa) are now teenagers. Wanda Dole, their mother, served as producer. A short version of the film took a documentary award at the New Hampshire Film Festival.

“I always had decent cameras and was able to shoot home video on decent stuff,” he says, “So it was just home video for the first five years.”

Dole says when his daughters were mainstreamed in the local schools, “It was a great way for the other kids to understand about kids with special needs. And I decided I’d make a film about the mainstreaming of my second-oldest daughter, Nikiya.”

When he heard of another New Hampshire filmmaker doing a project that was very similar, he decided to drop that approach, “but in 2008, when my oldest daughter began to have dementia issues, I began looking back into mitochondrial disease and was shocked to find out how many different strands of it there were, and how many connections there were to every neurological disease. I decided I needed to start letting everybody know this.

He created a three-minute teaser that’s on YouTube. “I’m a video editor and I had the gear, so it was like editing home movies for a while. I began to find a narrative that was much more like a documentary film. Friends who were beginning to udertsnad said I should really be making a feature-length film so I decided to start working on that.”

“Production” began with a family road trip that went from New Hampshire to St. Louis to Orlando and back home. Dole says the family had to drive for a variety of reasons related to his daughters’ conditions.

“When we got back, I began editing, knowing that I had to make it clear why we had to get in the car, why we couldn’t get on an airplane, and why we had to do things that were totally different than the way anyone else would.” He began editing in footage that created backstory and “realized I was make our feature right here.”

He said there were five possible story lines he could have chosen. He began showing footage to colleagues and friends and getting input “so it wasn’t just 90 minutes of home video stuff.”

The 15-minute short led to fund-raising to shoot in Boston, Pittsburgh and elsewhere. Friends worked for very little pay or none at all. He began to contact foundations that dealt with mitochondrial disease, and sought out production partners, potential distributors and networks. “That’s ongoing right to this day.”

Currently, he says, four volunteers are giving at least 10 hours week, helping to do medical research, or production research, or logging new footage. The project has a website that is as much informational about the condition as the film.

One debate, he says, was whether to make the project a nonprofit organization or consider finding for-profit investors.
“I had someone give me $1,000 and say, ‘Give me a business plan and I’ll give you at least $10,000 more. I was intrigued, and considered the for-profit route. Someone else was at $50,000. We began to get things together, then it turned out these two people no longer had the money. So now we were back looking at the 501(c)(3), and have been able to connect with organizations that can give money to nonprofits. We’ve gotten two $1,500 donations just in the last week.”

The shooting of the project goes all the way back to Dole’s Canon L1 (a Hi-8 format camcorder); currently, home video footage is being done on Flip HD video cameras. The project includes interview footage of various experts, shot on Panasonic HVX200 and Sony Ex1 and Ex3, depending on crews he works with for shooting.

“We have 80 hours of home video, and nine hours of interview footage,” he says.

As for his budget, “I’d tell you what it was, if I knew. When we go on a family vacation, but it’s set up with the film in mind, what do I count that as? And then there are people volunteering or working for very little. If I estimated the budget for the short with deferred payments to everyone, I’d estimate it at $25,000.”

Mitochondrial disease is not a subject the Dole family ever wraps on; likewise, the work goes on. The twins have written a script that a Dole friend and colleague is helping them produce. That, surely, will find its way into the documentary. The Doles and their story go on, but they’re working to push up awareness with the film.

The short is viewable on Facebook, “but we’re trying to get someone to take it in the broadcast side,” he says.

“I’m not even asking for a screening fee,” he says. “We’re just looking for a big-impact airing that will get some viewers. Then we’re always pressing on with the feature.”

An article from Portsmouth’s “The Gossip Lady” hears the rumblings of a local short film to be made by deaf twin sisters.

watch for ‘deaf Perception’

A simple Dole family project has gone haywire — and ballooned into a film project with 52 people.

“It came out of an idea Alyssa had for a movie last year — my 15-year-old daughter,” says Marc Dole, Hatchling Studio, and producer/director etc., for the film “Mito Kids.” “I told her to just write it.”

And so the kid who’s helped edit Dad’s work “(and watched for continuity),” since age 9 did just that; producing a five-page script in just a few hours titled “Deaf Perception,” “(DP),”

So Dad and mom Wanda say let’s get a camcorder and do it. Dole also shows it to his friend, filmmaker Chase Bailey, who loves it and immediately asks to direct the short. “DP” starts making the rounds and before Dole can say wooo-kid, it’s surrounded by professionals donating time and energy. (Cash is still needed for equipment and other costs. To help go to www.bit.ly/deafperception).

Alyssa, who is hearing impaired, her twin Ashley, who is deaf (and adapted sections of the film) and their siblings have Mitochondria and are the subjects of “Mito Kids.” “DP” is about people’s reaction to the twin’s signing one another in public. Alyssa will direct the film; Chase acting as mentor. Alyssa and Ashley also perform the leads.

And it continues. When word of the project reaches filmmaker William (Bill) Rogers, Coruway Films, he offers to film the behind-the-scene action for eventual use in the full-length “Mito Kids.”

The plan is to submit to festivals, but Dole will post it on YouTube as soon as possible to share its insights.

Here is a great video from Oprah’s favorite doctors. It isnt Mitochondrial specific but they mention “ATP” so it reaches out to the more common consumer.

Why Does Your Energy Level Fluctuate? Video
Are you feeling sluggish? Running on empty? You might be experiencing one of four common problems that leave your body functioning inefficiently. Get Dr. Oz and Dr. Michael Roizen’s tips to battle fatigue.

http://www.oprah.com/health/Dr-Oz-Reveals-Common-Energy-Problems-Video

Mito-Kids is looking for people to get involved! We invite you to join us in our effort to bring attention to the subject of Mitochondrial disease through the production of the feature film “Mito-Kids.” www.Mito-Kids.com

This week is the first official week that Connie Bottinelli as Executive Producer, and Darren Dodge as Associate Producer. They will be joining the award winning team of Karlina Lyons, and Wanda & Marc Dole and all the great people that have helped get us this far.

We are looking for people with marketing experience and for people to research into everything from potential corporate sponsors to current medical information on Mitochondrial disease.

We are also looking for people without marketing experience but have the drive to help us get this project in the public eye.

Mito-Kids works with the local non-profit Annie’s Angels to raise funds that will help alleviate the costs of production. We are in the process of setting up an LLC for potential investors as we develop this groundbreaking film.

We would like to have a kick off meeting this weekend on either Saturday afternoon at the Hatchling Ballroom at 3 Congress St in Portsmouth, NH. Please let us know if you are interested and if you are available to attend. if you are interested but cannot attend please email us your skype or other IM name and we will try and do a live stream of the meeting.

please email us mitokids@gmail.com to RSVP and you can also RSVP on our facebook fan page.

http://www.facebook.com/home.php#/mitokids?ref=ts

The Gossip Lady visits Hatchling and discusses Mito-Kids

2009 NH DAY & NIGHT WINNERS ANNOUNCED!
“Crooked Lane” & “Mito-Kids” Honored.

NH Film Festival kicked off Thursday with a packed house at The Music Hall to see Marc Dole’s “Mito-Kids: Documenting Life” win NH Documentary Film of the Year and Chase Bailey’s “Crooked Lane” win NH Film of the Year. Both awards were determined by the NH Jury.

In “Mito-Kids,” Dole, the owner and founder of Hatchling Studios, told the story of his four teenage daughters who have grown up with disabilities that stem from mitochondrial disease, a chronic, genetic disorder that occurs when the mitochondria of the cell fail to function properly.

Mito-Kids PRESS COVERAGE
Foster’s Daily Democrat
Seacoast Online

When Bailey’s name was called for “Crooked Lane,” the entire cast and crew joined him on stage, including stars Ann Cusack (“The Informant!”), Brett Cullen (“Lost”), Eliya-Quaye Constance, 9, of Brentwood; Noa Siegel, 11, of Exeter; executive producer Mark Constance and co-producer Bethany Constance (parents to Eliya-Quaye).

Crooked Lane

Mito-Kids: Documenting Life will have 2 screenings at the 2009 NH Film Festival Oct 15-18

Mito-Kids schedule at NHFF

Marc Dole and Hatchling also have 5 other films in the festival and will be sponsoring the Friday night party at the Gaslight.

Please join us in this special screening of our short film “Mito-Kids:Documenting Life”. We are continuing to raise awareness for the feature version of the film and your support is greatly appreciated.
Marc & Family

Boston Film Festival 2009

FOR IMMEDIATE RELEASE

MITO-KIDS: DOCUMENTING LIFE to premiere at the 25th annual Boston Film Festival

Boston, MA (Sept 15, 2009) The documentary film Mito-Kids will premiere on Sunday, September 20th at the 25th Annual Boston Film Festival. The film will play as part of a block of medical related documentaries covering Autism, Alzheimer’s Disease and stem cell research. The festival is open to the general public and festival organizers will be extending a special invitation to the Boston medical and medical research communities.

Mito-Kids is about the struggles, triumphs and everyday life of a family in which four teenage sisters have grown up with disabilities that stem from mitochondrial disease, a chronic, genetic disorder that occurs when the mitochondria of the cell fail to function properly. Marc Dole is the father of these four special young women and the film’s director. Marc’s children face challenges that include seizures, deafness, diabetes, immune disorders and severe learning and developmental disabilities. Yet despite these many challenges, Mito-Kids is an inspirational and relatable film about perseverance and family.

“I am very proud that our premiere will be in Boston because our family’s search for answers about mitochondria started at Childrens Hospital in Boston over 15 years ago.” said filmmaker and father Marc Dole.

Mito-KidsPostcard

As a father and a filmmaker, Marc has shot close to 100 hours of home video, beginning with the birth of his first daughter 19 years ago. The story starts before mitochondrial conditions were even a mention at medical conferences, let alone an area of genetic study. Mito-Kids follows the family through holidays and family vacations, seizures and hospital stays. Interviews with medical experts explain the role of mitochondria in producing cellular energy and reveal what happens to the human body when these cellular powerhouses fail. The incidence of mitochondrial disease is estimated at 1:3000-4000 individuals in the US and yet the disease is relatively unheard of in the public sector and poorly understood in the medical community. Mito-Kids aims to increase the understanding of mitochondrial disease and its connection to epilepsy, diabetes, ALS, Parkinson’s, Alzheimer’s, Heart Disease and many other neurological disorders.

The screening of the film will take place September 20th at 11am at the Kendall Square Cinema along with the medical documentaries Hope Deferred, The Sundowners, and A Vision of Wholeness.

About Filmmakers

Marc Dole, Producer/Director/Father of 4 daughters with mitochondrial disease. Marc is the owner and founder of the award winning Hatchling Studios, an alumni member of the New Hampshire Film Commission, Speaker, Panelist and Filmmaker. His films, including Tweet, The Toll, Endurance Challenge, and The Norman Rockwell Code, have screened at over 100 film festivals, with 14 “best of” awards.

Karlina Lyons, Producer. Karlina has more than 15 years of experience working in international and domestic media production, focusing on producing educational content for children and families. From 1998 until 2005 she worked in the International Production Division of Sesame Workshop. She is currently a consulting producer for the Cambodian Educational Media Initiative (CEMI), a partnership between WGBH and the global NGO World Education.
www.Mito-Kids.com

About Boston Film Festival

The 2009 Boston Film Festival celebrates a Landmark year with a distinct program of films on September 18-24 at the Kendall Square Cinema. A schedule of feature films, documentaries and shorts will be presented at the 25th festival. Filmmakers, actors and supporters have the opportunity to network at various events hosted by Boston’s signature restaurants throughout the week. A variety of awards are given annually. As the origin of many illustrious storytellers, the region provides an idyllic setting to experience a festival of motion pictures. The BFF is “quickly finding its place alongside the great film festivals of America.”  The BFF has premiered 25 years of remarkable films such as; American Beauty, North Country, The Piano, Reservoir Dogs, Jesus Camp, The Ground Truth, Flash of Genius, Grace is Gone, Trade and many others. Additionally, a vast list of directors and talent have participated at the festival including; Greg Kinnear, George Clooney, Dane Cook, Sam Mendes, Sir Ridley Scott, Jerry Weintraub, Alison Eastwood, Robin Tunney, and many more. The Boston Film Festival is dedicated to supporting evolving filmmakers by providing a forum to showcase their artistic vision.
http://www.bostonfilmfestival.org

Press contact:
Karlina Lyons
mitokids@gmail.com
www.Mito-Kids.com

The short version of our documentary was completed today and is starting to go out to film festivals, and media outlets.
We are planning private screenings in Portsmouth and Boston to help raise funds for the film.

If you want to recommend a festival or a journalist to send it to please email us their contact info mitokids@gmail.com

from The Portsmouth Herald

http://www.seacoastonline.com/articles/20090421-LIFE-904210301

Film documents local family’s struggle with genetic disorder

MORE INFO
For information about the film and upcoming fund-raisers, visit www.Mito-Kids.com or write to mitokids@gmail.com.

By Jeanné McCartin
features@seacoastonline.com
April 21, 2009 6:00 AM

Triage is not a word commonly used in most households. But it is at the Dole home.

“It’s medical and education triage, for whoever needs it the most that day,” says filmmaker Marc Dole, owner and founder of Hatchling Studios, a Portsmouth-based animation company.

Marc and Wanda Dole, who live in Nottingham, met in high school and had their first child while both were 19. Today they have four daughters, all with mitochondrial disease — a chronic, genetic disorder that occurs when cell mitochondria fail to function properly.

Marc Dole is completing “Mito-Kids: Introduction,” a short documentary on his family’s life and daily challenges. “Mito-Kids” is no ordinary film for a number of reasons. For starters Dole hopes it will help “brand” the disease, like so many diseases that have “star power” behind them to get the message out.

It’s also a fund-raising tool for a full-length version, with the intent that both it and the short film will help educate the public and attract research funds.

But “Mito-Kids” is most unique for the clips taken from more than 100 hours of the Dole family’s home videos, shot over the past two decades. They start, like so many, capturing the joy of a first child’s birth, and later the three younger siblings. But it also chronicles the developing health issues caused by an illness, undiagnosed or misdiagnosed for years.

The footage includes holidays and family vacations and seizures and hospital stays and will include interviews with medical experts and original animation.

The list of individual challenges differs with each Dole child. As a family they deal with seizures, deafness, diabetes, immune disorders and severe learning and developmental disabilities.

The two oldest Doles are “medically sensitive.” “It’s a word my wife uses,” he explains. “It just means at any given time, my older two girls Britney (19) and Nikiya (17) could have a seizure and their heart could stop. AND the heart could stop because of the medication we give for the seizure. It’s a crazy thing.”

Crazier was not knowing what afflicted their girls. They were still unaware at the time the twins were born, Ashley and Alyssa, now 15.

When the children were diagnosed in 1994, they were told there were only 290 families dealing with it in the United States. As for families with multiple mito-kids, with widely varying effects, “You couldn’t Google it in 1994,” says Dole. “So we didn’t know there were others out there until about a year ago when I started researching again.”

Still little is known of the disease, or why individuals are affected so differently. Dole said he looks at the differences in his daughters’ lives and wonders what tipped which scale. The two oldest lived their earlier years in a house with radon, discovered only they moved, and have different vaccination histories than the two youngest.

One twin is deaf, the other hard of hearing, both are diabetic and have other health issues. But neither have seizures and both are developmentally normal. Did the radon and vaccination differences alter the disease’s effect?

“This is what I’m trying to find out in the documentary. Does it matter? Was it chance?” he says. “I don’t want to be known as the leader of the disease but I want to get the story out there. …; And it can help (others affected) by letting them know they’re not the only ones dealing. For 10 years, we thought we were.”

These days the Dole family home videos are being edited and logged, while additional filming of experts is being done. The short will be finished in time for submission to the Cannes Film Festival’s Short Film Corner.

Dole has received an intent-to-broadcast letter from New Hampshire Public Television. The New Hampshire ABC affiliate, WMUR-TV 9 has aired the first of four planned behind-the-scenes news pieces about the project.

Last Sunday, Dole started to work the short film’s voiceovers. Shortly into it he choked up, he said. “I thought, ‘That’s right. This is me. …; I just talked about my daughters,” he says. “For us, a lot of this is just getting to the next point and getting through what you’re doing.”

Right now he’s ready to get this out there; he’s ready for some answers.