Mito-Kids

Living with the "Disease behind the Disease"

  • Subscribe

  • MitoKids Twitter

    • Britney is showing great patience as we sit in the ER waiting room for the start of a third hour. You really...
      http://t.co/mYZJHYI5
    • Britney came off her Seriquil last week and went onto a Abilify. She is not as aggressive towards others but has...
      http://t.co/jhCRgfL7
    • Nikiya always wakes up happy. today I realized why, she not only watches Barney but has Metallica playing in the...
      http://t.co/Mu03Kson
    • Brit takes a photo of a sheep at applecrest.
      http://t.co/0xHR6yF9
    • Britney talks to her new best friend, "Larry The Bird" from the iphone app
      http://t.co/wuTaTi7
  • RSS The Latest Mitochondrial News

  • Categories

  • Newsletter Signup

UMDF Event in Boston this weekend

Posted by admin on September 20th, 2010

Great event this weekend from the United Mitochondrial Disease Foundation – New England Chapter.
Mitochondrial Disease – Mission: Possible – Patient Education Meeting
Location: M.I.T. Cambridge, MA
Time: 8:30AM Saturday, September 25th

Join UMDF for an informative day with outstanding speakers including Dr. Gerard Vockely, Dr. Gerard Berry, Dr. Ana Hohler and Sarah Calvo, PhD. Representatives from many community groups will be participating in the resource fair as well.

The meeting is free, but RSVP’s are encouraged to ensure adequate food for lunch.

RSVP to Stephani Bush at UMDFmom@aol.com or 508-927-6262

More information is available at http://www.umdf.org/site/c.otJVJ7MMIqE/b.5709707/

We hope to see you there!

Posted in Medical, Uncategorized | 1 Comment »

“Mito-Kids: Documenting Life” in HD

Posted by admin on August 2nd, 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 »

Mito-Kids Documentary Screening & Fundraiser

Posted by admin on June 14th, 2010

2

On Thursday, June 24th, Red River Theatres in Concord will host a Mito-Kids fundraiser event. We will be screening two Mito-Kids film projects: Mito-Kids: Documenting Life and Deaf Perception. Both films have open captions for the enjoyment of hearing and deaf audiences. There will be a Q&A with the family and filmmakers directly following the screenings, with ASL translation.

Date: Thursday, June 24, 2010
Time: Two screenings 6 p.m. and 8 p.m.
Location: Red River Theatres, 11 S. Main Street, Suite L1-1, Concord, NH
Tickets: $10 at the door

Mito-Kids: Documenting Life:
Mito-Kids: Documenting Life is a short documentary about four teenage sisters 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. This video family history follows the Dole family as they are diagnosed with a series of diverse medical problems including diabetes, deafness, seizures, fatigue issues, thyroid problems and dementia. Frustrated by the lack of information available, they look for answers, while maintaining a focus on living their lives to the fullest. The short documentary was completed in 2009. The producers have made this film available to existing Mitochondrial awareness initiatives while working on the feature film version.

Deaf Perception:
Deaf 15 year old twin teenage sisters enter a cafe to share coffee and stories from their day. But the hearing patrons around them are captivated by their use of their hands to talk. A group of immature boys makes fun of the sisters, as the sisters discuss how closed minded people can be. But just as they sign this, they themselves see a new sign. Written by Alyssa & Ashley (the deaf and hearing impaired twin sisters themselves).

If you are unable to attend the event but would like to donate Annie’s Angels is our 501c3 fiscal sponsor and donations of $50 to $25,000 can be made to their site online at anniesangels.net. Please select Britney Dole – Mito Kids as your cause.

Tickets are available from the Red River Box Office.

Please continue to visit us on www.mitokids.org. You can also join the Mito-Kids community on Facebook.

Download the Red River Invite as a pdf here.

Posted in Uncategorized | 1 Comment »

Double Visions

Posted by admin on June 10th, 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 »

“Mito-Kids: Documenting Life” Cannes Screening this Sunday

Posted by admin on May 14th, 2010

Sunday at 11:00am
Screening Room 3 at the Cannes Short Film Corner

In a small screening room at the Cannes Film Festival the 18 minute documentary will screen to a limited capacity audience. If you are fortunate enough to be there please come see our film and meet with Producer Karlina Lyons. She can also supply you with a DVD of the film along with “Deaf Perception” and “Dark Scribbles”

LA and NH screenings coming soon

Tags: , , ,
Posted in Uncategorized | 2 Comments »

‘Mito-Kids’ documentary is one family’s growing concern

Posted by admin on March 7th, 2010

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.”

Tags: , , ,
Posted in Uncategorized, Video | 1 Comment »

“Deaf Perception” a Mitokids Short film

Posted by admin on March 7th, 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.

Tags: , , ,
Posted in Uncategorized, family | 3 Comments »

Oprah's Doctors Show Why Does Your Energy Level Fluctuate?

Posted by mitokids on February 7th, 2010

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

Tags: , , , ,
Posted in Uncategorized | 1 Comment »

Meeting of Mito-Moms, & Dads & Cousins etc

Posted by mitokids on February 1st, 2010

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

Tags: , , , , , , , , ,
Posted in Uncategorized | 1 Comment »

The Gossip Lady visits Hatchling and discusses Mito-Kids

Posted by mitokids on October 20th, 2009

The Gossip Lady visits Hatchling and discusses Mito-Kids

Tags: , , , , , , , , , , , ,
Posted in Video | 1 Comment »