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by GingerD

 What does quality of life mean to you?

One challenge when creating clinical trials for people with mitochondrial disease is the tremendous diversity that exists in our community. Even patients with the same genetic diagnosis may have different symptoms and varying degrees of severity.

May 09, 2016 Comments: 0
by Christine Cox

On Monday, July 20, 2015, MitoAction submitted a comment to the FDA on its proposed Memorandum of Understanding concerning the distribution of products from compounding pharmacies.  The proposed Memorandum of Understanding would substantially limit the ability of compounding pharmacies to distribute compounded prescriptions across state lines.  Since many Mito families rely upon high-quality compounding pharmacies that often are located in states other than their own for preparation of the Mito cocktail and other supplements, the proposed Memorandum of Understanding would have a s

Jul 22, 2015 Comments: 0
by Cristy Balcells

Preventing mitochondrial disease in future generations: New techniques may stop the transmission of faulty DNA from mother to child.

-       Cristy Balcells RN MSN

Feb 16, 2015 Comments: 0
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
Mitochondrial Disease Leadership Creed for Physicians, Researchers, Patient Advocates and Organization Representatives

 

Dec 16, 2013 Comments: 1
by Cristy Balcells
Once in a while, you get a great opportunity.

Today, we are really excited to show off our new logo and take you on a tour of MitoAction's history.

2005 MitoAction Logo

Jun 30, 2009 Comments: 2
by admin

This week, a finding from November of 2007 hit the news, after being sealed by Federal Courts to protect the plaintiff's identity. The US government has conceded one vaccine-autism case in the Court of Federal Claims. Of significant interest, the vaccine is thought to have triggered the onset of an underlying mitochondrial disease.

Mar 06, 2008 Comments: 0
by admin

For six months we have been fighting with our insurance company in order to get our daughter Eva a wheelchair. She turns 4 in April, and all of a sudden we left the world of overgrown baby items and crossed over into the land of special needs and durable medical equipment. Eva has Leigh's disease, a form of mitochondrial disease, that affects her muscles and neurologic system such that she cannot walk or talk. Sounds terrible, right? In reality, once we got over the diagnosis, we find so much joy in Eva.

Feb 16, 2008 Comments: 8
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