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Learn about and get involved with our corporate charity!

About Mitochondrial Disease

Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and cognitive disabilities with symptoms including poor growth, loss of muscle coordination, muscle weakness and pain; seizures, vision and/or hearing loss; gastrointestinal issues, learning disabilities, and organ failure. It is estimated that 1 in 4,000 people has Mito. It’s progressive and there is no cure. Learn more.

About MitoAction

For over 14 years, MitoAction has been transforming the lives of families affected by mitochondrial disease. Their mission is to improve the quality of life for children, adults, and families living with the disease through support, education, outreach, advocacy, and clinical research initiatives. To do this, MitoAction's goals include:

  • To improve quality of life for adults and children affected by mitochondrial disease.
  • To internationally raise awareness about mitochondrial disorders, and their relationship to other diseases.
  • To provide specific and practical materials that help patients to manage their symptoms
  • To aggregate and connect the international mitochondrial disease community
  • To engage pharmaceutical industry working toward therapeutic approaches to mitochondrial disorders.
  • To create tools which empower patients and caregivers to be advocates for themselves or their children.
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Our Story

As told by Gordon

I had never heard of mito until my late wife Sandra had a seizure "out of the blue" at the age of 48 in October 2004. Five months later we received a diagnosis of a mitochondrial disorder. We lost Sandra in August of 2008 to this mito disorder.

During our mito journey, MitoAction, which had just been formed, became a trusted advisor and friend to our family. After Sandra died I was honored to accept an offer to join the board of directors at MitoAction. Sandra was most upset by the fact that mito attacked children as well as adults. So I was pleased to be able to help launch the MitoAction initiative to fund a week of summer camp for "mito kids" in partnership with the Paul Newman Hole in the Wall Gang Camps (now called Serious Fun Camps). I volunteered as a counselor for five summers during "Mito Week" - and Jonathan did the same for two summers. This was a life changing experience for me.

Mitochondria are the source of energy for all cells in the human body. Without mito we don't live. Everyone has mito. Everyone's mito functions less well as we age. Fun fact: anti-aging skin creams contain the same basic ingredients that are found in the treatments given to mito patients.

Sandra Russell was a person with boundless energy. In fact, she provided energy to others! She took on each and every day full steam ahead! It remains a sad irony for me that she was stricken with a cellular energy disorder. 

 

Upcoming Events

MitoAction Energy Walk & 5K | Sunday, September 15, 2019 | Boston, MA

Whether you walk as an individual, create a team or volunteer, you’re making a difference in the lives of patients and families who rely on us. Your fundraising helps MitoAction change the future of health for every mito patient, here and around the world. Register, fundraise and then JOIN US!

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Light the Sky Celebration | Friday, June 21, 2019 | Taunton, MA

Join MitoAction and The Derosier Family to celebrate the Nice4Bryce Kindness Project and the hometown heroes in the community that have embraced this project!

Capes 4 Cal 5K | Sunday, October 20, 2019 | Seattle, WA

Capes 4 Cal began four years ago when SuperCal was in the hospital and created a green puppet called, "The MitoMonster". He was in isolation in the ICU for 21 days at the time and all he wanted was for people to know about his battle against the MitoMonster. That's how Capes 4 Cal was born and Calvin's daily fight against it, is why it continues today. Each year, we aim to raise awareness, through our neon green capes, and financial means for families like Calvin battling Mitochondrial disease. Capes 4 Cal is not like any other day... it is a day where you can become a superhero with SuperCal and other MitoFighters to show them that they will never be in this battle alone.

Save the Date! Derby Day Sandra K. Russell Benefit for Mito | Saturday, May 2, 2020 | Boston, MA

MitoAction's annual Derby Day Benefit is a night of fun that allows the community to come together to make a difference in the lives of families faced with the challenges of Mitochondrial Disease. Guests will be treated to Derby-inspired food and cocktails, a trumpeter calling you to the post, horse "betting," a ladies' hat contest, a men's bow tie contest, amazing auction items, and a large screen broadcasting the most exciting two minutes in sports!

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