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Monday, December 9, 2013

Thank You MitoAction!

MitoAction has started a fund to help advocate for Mito families who have been falsely accused of child abuse.


I think I can safely say, the Mito Population says THANK YOU!


Mito Patients daily face family,Drs, friends, even other Mito Patients who constantly accuse them of "faking" their symptoms or disease. It unfortunately is one of the biggest struggles and stigma's of having such an insidious and poorly understood disease.


While I understand the need to provide more research and educational opportunities to Specialists and other Medical Professionals, how many Mito Families will be destroyed and abandoned while we wait years for the diagnosis of Mito to be understood or accepted?


Thankfully, now that the Cancer researchers and other "big disease" Researchers have found that our mitochondria profoundly affect nearly every disease known to man, the research dollars are flooding in(Pharma Companies are dumping serious dollars into research,finally!) and it is time to give donations that previously went to research instead should be given directly to impact the quality of life for Mito patients and their families that care for them.


Today the donations need to go more directly to support the families who are suffering then toward research. Families who are being falsely accused. Who often lose the support of the Mito Community out of fear that to support a falsely accused family may cause unwanted scrutiny on their own families. It has become too acceptable and too common in our Community to abandon a family once they have been falsely accused- that must stop.

Justina had a genetic diagnosis(the current gold standard)there is also a documented family history.(via news,friends,and even a letter sent to BCH via MitoAction) She was being cared for by one of the World's Best Mitochondrial Disease Specialists- if this can happen to her and her family and she was 14, NO ONE is safe. It could happen to ANY Mito family.


Do you want your donation dollars to go more directly to helping a Mito Patient? Today, not a couple years from now via educating Drs who really ought to know better anyway?


Donate to MitoAction:


Your donation to MitoAction's advocacy campaign will be used for the sole purpose of supporting families in need of legal advocacy and to support research and education efforts specific to the task of changing the current problem of parents losing their rights to care for their children due to unwarranted accusations of medical abuse.

For every donation made, MitoAction pledges to create a task force to address this issue and help families around the country in need. Our fundraising goal to support this effort is $50,000. As a supporter, you will also receive regular updates about this project and be invited to contribute regularly. This is a community issue that can only be addressed by a wide base of support!

Thank you for your support!



When I saw this announcement from MitoAction, I felt instant relief. For the last couple years I have watched in horror as family after family has been accused, then support from the Mito community is cut from them, and then our large Non-profits did not have any support systems in place. The very fact that the organizations would not get involved was percieved by me(others?) as them agreeing that the family was guilty. It was a horrible feeling and such a sense of paranoia and panic. The lack of intervention by our leaders was adding fuel to the fire. It not only did not make the problem go away it made it bigger. We all know the saying "secrets make you sick" and this past few years in the Mito Community has proven that saying to me as too close to the truth then even I would care to admit.

To the many families that have "come out" and shared their stories of being falsely accused because their child was diagnosed with Mito, thank you! Thank you for being brave enough to stand on your own and fight this!

To the many families who have been brave enough to support other Mito families suffering these false allegations, Thank you! It is delightful to see families supporting families in the best and the worst of times. Those who are true advocates for Mito families get my applause.

MitoAction has a terrific track record of making every single penny donated to them count. No fancy offices, or big salaries- they put every penny toward advocating for the entire Mito Community.

If you can even donate 5 dollars? It WILL MAKE A DIFFERENCE!

Donate to MitoAction HERE-



I don't know Justina's family. I don't know most of the families falsely accused. What I do know is they are suffering. I feel a deep responsibility to do what I can to ease the stigma of having Mito.

In America, we are Innocent until proven Guilty. With a healthy support system I think many of these families would never face this horror in the first place.

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