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About MitoAction

Brianna Couture

Our History

MitoAction is a nonprofit organization founded by patients, parents, and Boston hospital healthcare leaders who had a vision of improving quality of life for children and adults with mitochondrial disease. The organization began in 2005 as an idea and has evolved from a small New England support group to a dynamic, active service organization helping thousands of patients and families. Despite the growth of the organization, the mission remains the same: to make a measurable impact in the lives of those who are affected by mitochondrial disease. 

Our Mission

MitoAction's mission is to improve the quality of life for children, adults, and families living with mitochondrial 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.

We strive to offer comprehensive, up-to-date, expert resources, information, and support at no cost to any patient, family, clinician, educator, or member of the community.

We continue to seek multiple ways to offer information such that the resources are accessible and user-friendly for people of all abilities.

We foster relationships with the scientific, academic, research and business community in order to create sustainable support for the mission of MitoAction.

Our Vision

MitoAction's vision is to create a community of support that reaches every child, adult, and caregiver affected by a mitochondrial disease.

Effective awareness and advocacy will guarantee that every patient has access to specialized care and a network of support and information that improves the journey for every individual affected.

What is Mito?

Mitochondrial disease is a chronic genetic disease that can be present at birth or develop later in life. Targeting the higher energy requiring body systems, Mito causes debilitating physical, developmental, and cognitive disabilities. Symptoms may include: poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, or kidney failure. Approximately 1 in 4,000 people lives with Mito. This disease is progressive and has no cure.

Questions? Need help? Looking to connect? Contact us:

MitoAction's Mito411 Support Program connects callers to volunteers who are parents, adult patients, caregivers and nurses who can provide support, share resources, answer questions. Contact MaryBeth Hollinger, Director of of Education, Support & Advocacy, by phone, 1-888-MITO-411 (1-888-648-6411) or by email Mito411@mitoaction.org.

Effective awareness and advocacy will guarantee that every patient has access to specialized care and a network of support and information that improves the journey for every individual affected. Contact MaryBeth Hollinger at 1-888-648-6228 or mito411@mitoaction.org.

Looking for help with awareness activities, educational materials, or general questions? Contact Ginger DeShaney, Director of Operations & Communications, at 1-888-648-6228 or support@mitoaction.org.

Need to speak with the Chief Executive Officer? Contact Kira Mann at 1-888-648-6228 or kira@mitoaction.org.

Planning an event or interested in sponsorship or fundraising? Contact Shawney Lamm, Director of Special Events and Fundraising, at 1-888-648-6228 or shawney@mitoaction.org.

 

We welcome your comments, questions, and suggestions. Please click this link to provide your information so we can respond appropriately. Thank you! 

Click here for our Annual Report.