Parents who have a child with a mitochondrial disorder identify navigating the educational process while battling a poorly understood medical condition as one of their most significant stressors. Through this outreach and education effort, MitoAction hopes to make a lasting impact for these families.
Boston, Massachusetts (PRWEB) March 19, 2009
MitoAction.org has launched a free multimedia resource designed to assist parents and teachers educating a child with a mitochondrial disease. The "Energy 4 Education" DVD and complimentary school support resources are available online and by request. Thousands of children affected by mitochondrial diseases suffer from multiple invisible symptoms, such as extreme fatigue, muscle pain and weakness, developmental delay, and inability to tolerate heat and illness. The "Energy 4 Education" project targets the knowledge gap that exists for these children in today's classrooms, and helps fulfill Mitoaction's mission to improve quality of life for the mitochondrial disease patient community through support, education and advocacy initiatives.
Mitochondrial disease is an energy metabolism disorder found in approximately one in 4000 adults and children in the U.S. The disease has been linked to autism, Alzheimer's, Type 2 diabetes, and Parkinson's disease. Today, there are no FDA approved drugs for mitochondrial disease, and symptoms vary widely from patient to patient.
Little exists for support of parents who advocate for the child with mitochondrial disease within the school system. Parents are often alone in their fight to educate teachers and demonstrate the best ways to support their child. No other resources are currently available to help. Cristy Balcells, RN MSN, Executive Director of MitoAction, says, "Parents who have a child with a mitochondrial disorder identify navigating the educational process while battling a poorly understood medical condition as one of their most significant stressors. Through this outreach and education effort, MitoAction hopes to make a lasting impact for these families."
MitoAction anticipates that the release of the Energy 4 Education DVD and complimentary online school advocacy resources will empower parents to better advocate for their chronically ill children and the complex accommodations and modifications that help affected children succeed in school.
This project was made possible in part by a grant from the Sean McDonough Charitable Foundation.