Mito-Kids

Living with the "Disease behind the Disease"

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Archive for the 'family' Category

“Mito-Kids: Documenting Life” in HD

Posted by admin on 2nd August 2010

We proudly present the award winning documentary “Mito-Kids: Documenting Life” in HD with open captions for the hearing impaired.

Mito-Kids:Documenting Life from Ashley & Alyssa Dole on Vimeo.

Posted in Medical, Video, family | 1 Comment »

Double Visions

Posted by admin on 10th June 2010

A Portsmouth family — living with the challenges of mitochondrial disease — lets us venture into their world.

From NH Magazine June, 2010

MitoKids

The Mito-Kids pose for a Dole-family photo. Back row (from left): Alyssa (16), Britney (20), Ashley (16). Front row: Nikiya (18). Photo by Marc Dole.

“Deaf Perception” opens with the title, “This film has been captioned for the signing impaired,” ushering the hearing into the world of 16-year-old twin deaf filmmakers Alyssa and Ashley Dole.

With this, their debut movie, the sisters follow the lead of their father, Marc Dole, CEO and founder of Portsmouth’s Hatchling Studio. Last year, he, wife Wanda Dole and business partner Karlina Lyons produced “Mito-Kids,” an award-winning documentary that captured life in the Dole household.

The films are both about living with mitochondrial disease — all four of the Doles’ daughters have it. It is suspected to be an underlying cause behind disorders such as deafness, diabetes, Parkinson’s, cerebral palsy, multiple sclerosis, Alzheimer’s, autism and ADD.

Sifting through more than 100 hours of home videos, Marc created “Mito-Kids” as a 15-minute glimpse into their life to illustrate the potential a full-length documentary could have. “We want people to learn about the disease behind many diseases,” says Marc.

The twins’ film echoes those themes but from an even more personal perspective. “I want people to understand that we’re different because of our health issues, but we’re not different as people,” says Alyssa. The film was shot this spring with help from more than 50 area filmmakers.

Says Lyons, who also helped produce “Deaf Perception,” “The message is clear that mitochondrial disorder doesn’t stop these kids or this family from doing great things.”

To carry those messages to a larger audience, filmmakers are now seeking help in financing the feature project.

The two films will appear in the Cannes Short Film Corner and will screen at Red River Theatres in Concord June 24 at 6 and at 8 p.m., plus other locations, TBA.

— By Dana Biscotti Myskowski

Tickets avaialable at RedRiverTheatres.com

Posted in family | 1 Comment »

“Deaf Perception” a Mitokids Short film

Posted by admin on 7th March 2010

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

By Jeanné McCartin
–Excerpt from

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.

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Posted in Uncategorized, family | 3 Comments »

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

Posted by mitokids on 15th September 2009

Boston Film Festival 2009

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

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

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Posted in Medical, family | 1 Comment »

Mito-Kids Fundraiser Article in Herald

Posted by mitokids on 17th April 2009

from The Portsmouth Herald

http://www.seacoastonline.com/articles/20090417-NEWS-90417022

WHAT: Mito Kids Zumba with Angela Fund-raiser

WHERE: The Rockingham Ballroom, 22 Ash Swamp Road, Newmarket

WHEN: Friday, April 17; 6 to 7 p.m.

COST: $6

WEAR: Loose, comfortable clothes

INFO: About the film and upcoming fund-raisers, www.mito-kids.com or write to mitokids@gmail.com

By Jeanné McCartin
features@seacoastonline.com
April 17, 2009 11:33 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. The Mito-Kids Zumba with Angela Fund-raiser, in support of the film’s production, is scheduled for Friday, April 17 at the Rockingham Ballroom in Newmarket.

“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 heart. 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.

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Posted in Medical, Uncategorized, family | 1 Comment »

Now on iTunes

Posted by mitokids on 13th March 2009

mitokidspodcast
You can now subscribe to our videos on iTunes, so you can get our videos straight to your computer, iPod, iPhone, iAppleTV, or however your eye watches video.

Mito-Kids iTunes

RSSIf you dont use iTunes you can use this feed

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Posted in Medical, Video, family | 1 Comment »

WMUR – NH Chronicle

Posted by mitokids on 9th March 2009

The first special behind the scenes look at the production of Mito-Kids aired on February 26th and is finally posted on their website in 3 parts

Enjoy!
http://www.wmur.com/chroniclevideo/18851138/index.html

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Posted in Medical, family | 1 Comment »

Mito – Griswalds

Posted by mitokids on 26th February 2009

Aly feeds Wifi to the rest of the car

Like our fore fathers before us we head west on a quest for answers about Mitochondrial Disease. Unlike our forefathers we are traveling the interstate and visiting relatives, and we have been dubbed “The Mito-Griswalds”. National Lampoon is not underwriting this Vacation, but we are having fun, bumping into odd people, and visiting relatives.

While we are on our tour NH Chronicle will be airing a half hour special on “Mito-Kids” Thursday Feb 26th at 7:30pm please tune in if you can. I hope they will also place it onliine and if they do I will be sure to send a link

There is a teaser here
http://www.wmur.com/chronicle/index.html

And more of the story here
http://www.wmur.com/chronicle/18739955/detail.html

I will be adding more video to www.mito-kids.com over the week as we do more interviews and take some vacation time

Thanks
Marc

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Posted in Medical, family, vacation | 1 Comment »