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Advocacy Task Force Toolkits Now Available on the MitoAction Website

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.  We had a terrific response to the planned mission of the Advocacy Task Force and included parents as well as professionals familiar with the issue of Medical Child Abuse in the group.
 
I am delighted to unveil today the first round of materials produced by the Advocacy Task Force.  The materials have been added to the "Advocacy" section of the MitoAction website and may be accessed here:  http://www.mitoaction.org/advocacy
 
In this first phase, we are releasing the following tools:
  • The Mito Navigator Toolkit, which is intended to help patients and families navigate the medical system more easily; 
  • A Plan of Action for times when families must respond to allegations of Medical Child Abuse;
  • "You Know Your Child Best," a downloadable PDF of an article originally published in Pittsburgh Parent by Advocacy Task Force member Kristi Wees; and
  • A video of Medical Ethics and Patient's Rights presentations given by attorney James Ianiri and Advocacy Task Force member Jessica Shriver.

In the near future, we plan to add anonymous patient and family stories of actual experiences with Medical Child Abuse, additional videos and podcasts, and several other key resources.

I am especially grateful to all of the individuals and families who donated to MitoAction for advocacy-related activities.  The development of these materials is a direct result of your generous support.    

It has been an honor to work with the members of the Advocacy Task Force as well as the Advisory Council members who reviewed the materials we produced.  I am proud of what we have accomplished thus far as a community and look forward to creating additional resources for our brave patients and families. 

About The Speaker: 

Christine Cox, JD, Director of Outreach and Advocacy

Christine Cox, JD, is the Director of Outreach and Advocacy for MitoAction. Christine has a child with a mitochondrial disorder and knows firsthand just how important yet costly unreimbursed supplements and medical foods can be.  Christine practiced law in Atlanta, GA, for over a decade and joined MitoAction in a professional capacity in early 2014.  Since 2010, she has worked on legislation pending in the Georgia General Assembly for coverage of medical foods used in the treatment of metabolic and eosinophilic conditions. Christine also has championed Massachusetts House Bill 977, legislation MitoAction has been supporting for seven years that would mandate private health insurance coverage for the Mito Cocktail and recently resulted in the first ever cost/benefit analysis of the Mito Cocktail.  Christine is a tireless patient advocate dedicated to improving access to treatments and medications for mitochondrial disease as well as counseling Mito patients and families on the best ways to communicate with medical professionals and schools.

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