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Monthly Mito Expert Series

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Wendy Helmka understands how important advance directives are for an adult patient with mitochondrial disease."The doctors told me that I would have died if I had not had the advance directive, or if I had not been able to go home with 24 hour nursing care. I would have been put in a nursing home where medicines used to treat my symptoms would have damaged my mitochondria even more, and may have killed me."

Feb 26, 2008 Comments: 0
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The doctors tell me my son has mitochondrial disease. They say it's a progressive, incurable disease, but they can't tell me what will happen next or when it will happen or even if he's going to live to be a grown-up. How do I cope?

Feb 19, 2008 Comments: 1
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Guest speaker Saad Dinno RPh talks about the "Mito Cocktail". Join us as Acton Pharmacy's mitochondrial disease specialist discusses the various vitamin and supplement ingredients that may be included in the Mito cocktail. He will help patients and parents to understand the basics about these supplements, who may use them and why, and possible side effects or interactions while taking them.

Feb 18, 2008 Comments: 0
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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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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
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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
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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
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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
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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
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"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

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