Join us this month on Friday May 3, 2013 with Dr. Hope Schreiber from Tufts Medical Center to talk about successful transitions for teens and young adults with mitochondrial disease.Based on a pilot study conducted by Dr. Schreiber and published in the Journal of Child Psychiatry in December 2012, we will talk about attitudes, behaviors and skills that were most common in teens and young adults with mitochondrial disease facing transition to college or independence.
MitoAction Blog
by Cristy Balcells
Patients, parents and families - please join us Friday April 5th by teleconference to learn more about this exciting mitochondrial disease clinical trial. An update from Edison Pharma on the Development of EPI-743
by Cristy Balcells
It's time to take charge of the many hours that we as patients and families spend in clinics, waiting rooms, hospitals, and healthcare provider offices. How can you get more out of every appointment? More importantly, how can you get what you need from those interactions?
by Cristy Balcells
Do you have a child with mitochondrial disease (known or suspected)?Are you stressed?Are you tired?Do you feel like no one, including friends and even your own doctors, really understands what it's like to be the parent of a child with Mito?You can make a difference by participating in this 10 minute survey through Washington State University School of Nursing. WE NEED YOUR VOICE!!!
by Cristy Balcells
Join us for the annual "Mito Town Meeting," Friday, Jan. 4, 2013 at noon EASTERN time. The annual town meeting is our way of kicking off the new year by sharing all that is planned for the year. We'll hear from volunteers and representatives from a variety of programs and organizations. This is the meeting to attend if you want to get involved or get informed!
Importance of Community: Philip Borden, MitoAction Board President
by Cristy Balcells
What should you do when you or your child is sick?
Being sick, even with a cold or a simple virus, is tough for most children and adult Mito patients. Many people with mitochondrial disease are "wiped out" when ill, and can take much longer to recover. Join us Friday December 7th, 2012 for an exciting teleconference with Dr. Mark Korson as we discuss what to do when a Mito patient is sick at home:
by Cristy Balcells
Join us this month on Friday November 2nd at 12 pm EDT to learn more about exercise and physical therapy options for mitochondrial disease patients. Children and adults with Mito face a tough dilemma - we hear exercise may be helpful for those with mitochondrial disease, but exercise can be painful or downright impossible due to fatigue, muscle weakness, and other symptoms.
by Cristy Balcells
Patients, parents and families - please join us Friday October 5th 2012 by teleconference to learn more about this exciting mitochondrial disease clinical trial.
LISTEN TO THE RECORDING OF THIS MEETING NOW
by Cristy Balcells
Join us this month with education chair Kirsten Casale and executive director and author Cristy Balcells to answer parent's most commonly asked questions about helping kids with Mito be successful in school.Kids with Mito are complex. Navigating the educational system is also complex. Often parents are wonderful advocates but don't know or understand the law.
by Cristy Balcells
Tools for Testing Mitochondrial Disorders: The Latest Advances in Genetics and Genomics
Join us on Friday August 3rd, 2012 with guest speaker Dr. Richard Boles from Children's Hospital Los Angeles and Courtagen Life Sciences, Inc. to discuss: