MitoAction Blog

by Christine Cox

As media coverage of the Justina Pelletier case has grown, so has the misconception that mitochondrial disease is closely correlated with medical child abuse and its predecessor diagnosis, Munchausen’s Syndrome by Proxy. On behalf of MitoAction and the mitochondrial disease patients we represent, we are extremely troubled by this development and wish to highlight the obvious differences between mitochondrial disease and medical child abuse.

Apr 16, 2014 Comments: 0
by Cristy Balcells
Understanding the mechanisms of mitochondrial deafnessJoin us this month with Dr. Peter Kullar, Clinical Research Fellow at the Wellcome Trust Research Centre for Mitochondrial Disease at Newcastle University (UK) to learn about mitochondrial disease and hearing loss.
Apr 02, 2014 Comments: 0
by Cristy Balcells

Dysmotility: abnormal contractions of the bowel, which slows or impairs digestive emptying and may cause symptoms such as pain, nausea, bloating, diarrhea, constipation or vomiting. Dysmotility can be caused by abnormalities of the muscles of the intestine (myopathy) or by abnormalities in the nerves in the intestine which control the muscles (neuropathy). For children and adults with mitochondrial disease, dysmotility is common and can be due to muscle myopathy and/or autonomic nervous system dysfunction (dysautonomia).

Feb 27, 2014 Comments: 0
by GingerD
A weekend of education, support, and awareness

MitoAction hosted the Mitochondrial Disease Clinical Conference LA and the LA Mito Patient & Family Social on Feb. 8-9, 2014.It was an amazing weekend for everyone involved!

Feb 13, 2014 Comments: 0
by Cristy Balcells
Edison Pharma’s partnership offers hope for Mito community

 

Feb 03, 2014 Comments: 0
by Cristy Balcells
Join us for the annual "Mito Town Meeting" on Thursday Jan. 9, 2014 at noon EASTERN time (9 a.m. Pacific). 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!

 

Jan 06, 2014 Comments: 0
by Cristy Balcells
Mitochondrial Disease Leadership Creed for Physicians, Researchers, Patient Advocates and Organization Representatives

 

Dec 16, 2013 Comments: 1
by Cristy Balcells

The story of one girl held in custody in Boston without the support of her parents due to a disagreement about her mitochondrial disease diagnosis is an example of a problem which is happening to families across the country. Join us in taking action and learn more about our advocacy efforts.

Dec 09, 2013 Comments: 0
by Cristy Balcells

How can you prepare your child for independence?

Nov 05, 2013 Comments: 0
by Cristy Balcells

Join us with Dr. Joseph Clark PhD to learn more about creatine deficiencies. Dr. Clark is a professor of neurology at the University of Cincinnati College of Medicine. His many research interests include creatine deficiency disorders, glutathione and oxidative stress, and the role of cyclocreatine in the treatment of autism spectrum disorder.

Oct 30, 2013 Comments: 0

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