MitoAction

Basic Information

Address: 14 Pembroke Street Medford, MA 02155

Phone Number: 888-MITOACTION

Fax Number: 888-MITOACTION

Email: info@mitoaction.org

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Additional Information

Executive Director: Cristy Balcells RN MSN

President: Paul Harty

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

Mission Statement:

*SUPPORT*EDUCATE*ADVOCATE*
* 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 and 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.

Membership Fee: FREE

Eligibility Requirements: n/a

Area Served: International

Events:

Please join MitoAction in honoring every child, adult and family who battles mitochondrial disease on Sunday September 13th, 2009 in Cambridge MA for our annual MitoAction Walk and Run.

Conferences/Speakers: Presenter at June 2009 UMDF Mitochondrial Medicine Conference in Washington, D.C.

Fundraisers: Make a gift to support all affected by mitochondrial disease! Help us make a difference Your generous gift allows MitoAction to raise awareness and bring support to the thousands of adults and children who have mitochondrial disease. Community contributions like yours fund important programs such as toll-free support, legal advocacy, education programs and patient outreach. With your support, we will empower the families touched by this devastating disease with tools to live. To make a secure tax-deductible donation right now to MitoAction, please visit: https://secure3.convio.net/mito/site/Donation2?idb=595141609&df_id=1180&1180.donation=form1. To make a gift by mail, please send your check made out to MitoAction to: 14 Pembroke Street, Medford, MA 02155.

Support Groups: Mito 411 Mito411 is a program designed to offer hands-on, "live" support for families by families. By choosing a volunteer with experience in a particular area and calling 1-888-MITO-411, callers can reach a volunteer for support and conversation. It is a free service funded and staffed collaboratively by MitoAction and Marcel's Way (a New Hampshire based Mitochondrial disease organization). It is not, however, intended to provide medical opinions or advice. Online Support Groups by teleconference 1-866-414-2828, participant code 017921 EASTERN STANDARD TIME *Newly Diagnosed Patients Support Group:12 pm 2nd Friday of each month Going through the process of a diagnosis for mitochondrial disease is emotionally and physically exhausting. Join this toll-free open meeting to connect with other adult patients and parents of children who are struggling with a "Mito" diagnosis. *Autism-Mitochondrial Disease Task Force: 12:30pm EST 2nd Tuesday of each month *Parents Support Group: 12pm EST 3rd Friday of each month A support group open to parents of children with mitochondrial disease. The mission of this group is to offer an informal and supportive opportunity to connect with others who can understand the daily struggles of living with mito, share resources, information and ideas, vent, laugh, cry, and give support to one another. In other words, our best attempt at getting together over coffee in an international context from your own home! *Adult Patient & Spouse Support Group: 12pm EST 4th Friday of each month All adults dealing with the diagnosis of mitochondrial disease are welcome to join this informal telephone support group held once a month and hosted by MitoAction.The purpose of this group is to allow adult patients from many different geographic areas to connect, talk about their symptoms and challenges, seek and provide emotional support, and share information and resources.

Detailed Organization Information:

MitoAction.org

Education Overview

This area of our site is dedicated to helping families, teachers and schools navigate the complex world of mitochondrial disease. Because the symptoms of "Mito" are so varied and each child is uniquely affected, working with children affected by mitochondrial disease can be especially challenging. Also, please keep checking in, as this site will continue to offer updated and new information on a regular basis.

Children with "Mito" can attend school... with the supportive tools that can help a student maintain health and energy throughout the day. Teachers, parents and students, with the guidance of the child’s physician, need to work together as a team to promote the best learning experience possible.**

MitoAction is thrilled to offer the "Energy 4 Education Video" as a means to help parents, students and educators understand and convey the many variabilties and complexities of educating a child with Mitochondrial Disease. Educators will truly appreciate the insights shared from students, families and other teachers who have established strong relationships while working together to make all educational possibilites probabilities!

**For additional information and recently posted or discussed questions please be sure to check out the "Support Zone" forum under the section listed as "School Advocacy". In this forum, patients, parents, care providers, teachers and family members post questions about educational needs and interests, as well as suggestions that have worked for them as they advocate for their children's educations. Be sure to check it out! http://www.mitoaction.org/forum

MitoAction Education Chairperson-Kirsten Jo Casale

Please feel free to email me with any questions, comments, or suggestions at the following email address: education@mitoaction.org

Slogan: Support, Educate, Advocate