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Monthly Mito Expert Series

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
by admin

Kirsten, a MitoAction member, reported that Barbara Morse Silva interviewed her kids Olivia and Harrison on WJAR Channel 10 Providence, New Bedford RI (NBC) about their Make A Wish Foundation of Rhode Island "wish granted" trip and their mitochondrial disease.

The story with pictures of Olivia meeting and fencing with Antonio Banderas is available here. Mr. Banderas is probably most famous for his movie role as Zorro.

Feb 13, 2008 Comments: 0
by admin

MitoAction welcomed Valerie Powers Smith, Attorney-at-law, as guest speaker for the February General Meeting, February 1, 2008.

Topic: What you should know about disability rights

Feb 01, 2008 Comments: 0
by admin

Today, January 28th, the MitoAction committee chairs met by conference call to discuss the exciting ideas and projects ahead for 2008. Attending were: Lisa Parker, PR and Awarness Committee; Jean Shepherd and Wendy Helmka, Adult Advocacy Coalition; Kathy Graff and Kim Costello, Web Comittee; Anne Reckling, Publication Committee; Kirsten Casale, School Advocacy Committee; Christy Balcells, Executive Director; and Kim Lorimier, President, Board of Directors.

The top three goals for each committee were discussed. The following were discussed:

Jan 28, 2008 Comments: 0
by admin

Is Exercise a New Year's Resolution for People Affected by Mitochondrial Diseases?

NEW! Click here to download the Mitochondrial Myopathy Exercise Guide from Vancouver Coastal Health

Jan 05, 2008 Comments: 8
by admin

December 7, 2007 General Meeting - discussion dealing with holiday stress, importance of watching fluid intake

Moderated by Cristy Balcells, MitoAction Executive Director

Full recording (6.4 Mb, MP3 file)

Dec 07, 2007 Comments: 0
by admin
"My child or I don't tolerate heat very well - how can we survive the summer?"

 

Managing Very Warm Weather

Traveling in the summer or going to a hot climate can be challenging for some people with mitochondrial disorders. There are several suggestions that may help to keep you cool.

Sep 29, 2007 Comments: 6
by admin

A conversation with compounding pharmacist Arthur Margolis from America's Compounding Center, September 7, 2007 by teleconference.

Cristy Balcells, Executive Director: Welcome Arthur! We are so glad to have you as part of the call today, as many of our patients struggle to understand about CoQ10. We often hear questions about insurance coverage, best forms to take, ways to get high doses necessary for mitochondrial disease, etc.

Sep 07, 2007 Comments: 2
by admin

Brianna Couture

You may hear Brianna singing in local musicals or see her teach Tai Kwon Do to children. You may notice her lovely voice and her smile. You may notice the blackbelt that she wears at Tai Kwon Do. But you probably won't notice mitochondrial disease. Brianna was diagnosed with mitochondrial disease as an infant but has not let it get in the way of her dreams.

Aug 01, 2007 Comments: 5
by admin

I don't want to be this sick kid; I want to be the NORMAL kid.

Kids

Jul 29, 2007 Comments: 0

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