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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
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 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
Join us for the annual "Mito Town Meeting," Friday, Jan. 4, 2013 at noon EASTERN time. 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!

 

Importance of Community: Philip Borden, MitoAction Board President

Jan 02, 2013 Comments: 0
by Cristy Balcells
Join us this month with education chair Kirsten Casale and executive director and author Cristy Balcells to answer parent's most commonly asked questions about helping kids with Mito be successful in school.Kids with Mito are complex. Navigating the educational system is also complex. Often parents are wonderful advocates but don't know or understand the law.
Sep 03, 2012 Comments: 0
by Cristy Balcells
How can a service dog help a child or adult patient with mitochondrial disease?

May 27, 2011 Comments: 2
by Cristy Balcells
Mito Cocktail Financial Assistance author: Heidi Martin-Coleman, "Cut the Red Tape" advocate
Dec 06, 2010 Comments: 2
by Cristy Balcells

Supporting the brothers and sisters of kids with special needs

Sep 28, 2010 Comments: 0
by Cristy Balcells
For someone who lives with mitochondrial disease, understanding the "big picture" is important.

LISTEN TO THE RECORDING OF THIS MEETING HERE!

Aug 31, 2010 Comments: 2
by Cristy Balcells
Becoming a great advocate: Advice for parents & patients with complex needs

Join us this month with Mark Korson MD and Maggie Orr RN MSN MEd from Tufts Floating Hospital for Children in Boston, MA to discuss the do's and don'ts of being an advocate.Listen to this teleconference recording here

Mar 30, 2010 Comments: 0

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