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Monthly Mito Expert Series

by GingerD

In the past year, the mitochondrial disease community has witnessed the closing of five clinics specializing in the treatment of mitochondrial disorders. While these clinic closures all have occurred for slightly different reasons, it has become clear that treatment of mitochondrial disorders, with their varied presentations, diagnostic difficulties, and limited available treatments, is not considered a priority at academic centers across the country.

Feb 13, 2015 Comments: 0
by GingerD

This is a joint teleconference between MitoAction & UMDF for the benefit of the mitochondrial disease community.

Feb 03, 2015 Comments: 0
by GingerD

Jan 01, 2015 Comments: 0
by Cristy Balcells

Mitochondrial disorders are characterized by complex presentation of multiple symptoms. Due to a variety of factors, including heterogenity of the disease, erratic symptom presentation and general lack of awareness about the condition, families with mitochondrial disease are more often faced with accusations of medical child abuse than other conditions. Living with mitochondrial disease and serving as one's own advocate impacts the entire family on a daily basis.

Dec 12, 2014 Comments: 0
by Christine Cox
Last spring, MitoAction announced the formation of the Advocacy Task Force to address recurrent and widespread allegations of Munchausen Syndrome, Munchausen Syndrome by Proxy, and Medical Child Abuse throughout the mitochondrial disease community.  The purpose of the Advocacy Task Force is to provide a well-reasoned community response to this issue from members of our disease community. 
Dec 10, 2014 Comments: 0
by Christine Cox

MitoAction has joined Patients and Physicians for Rx Access, a coalition addressing the issue of insurance cuts to compounded medication coverage.

Nov 24, 2014 Comments: 0
by Cristy Balcells
What is the mitochondrial disorder PDCD?PDCD is an abbreviation for pyruvate dehydrogenase complex deficiency, a genetic mitochondrial disorder in children which is frequently associated with lactic acidosis and neurological/neuromuscular symptoms. Join us Friday November 7th, 2014 with Dr. Peter Stacpoole from the University of Florida to learn about testing, diagnosis and treatment of PDCD.

(From Dr. Stacpoole's Benefunder Research page)

Oct 20, 2014 Comments: 0
by Cristy Balcells
Join us this month with Dr. Andrew Nierenberg from Massachusetts General Hospital to learn more about Psychiatric Disorders in Mitochondrial Diseases and Mitochondrial Dysregulation in Psychiatric Disorders.
Sep 26, 2014 Comments: 0
by GingerD

KINGSPORT, TN -- The Castle family’s goals are simple: raise awareness about mitochondrial disease, move forward, and live.

They count their blessings and thank God for all that they have, especially Cooper. “Cooper is here because of the hand of the Lord,” Chris Castle said about his 6-year-old son.

Cooper coded when he was 12 hours old, starting this Fall Branch, TN, family’s mitochondrial disease odyssey. 

Sep 11, 2014 Comments: 0
by GingerD

Aug 25, 2014 Comments: 0

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