Living with Mito

"Thinking" about Mito: Neuropsychological problems in mitochondrial disease

Cristy Balcells — Mon, 10 Nov 2008 00:00:00 -0800

Highlights from the MitoAction Walk 08

Cristy Balcells — Fri, 26 Sep 2008 11:55:22 -0700

September 21st, 2008
Cambridge, Massachusetts

615 people came together for one cause, and the result was incredible!

Read the 2008 Mitochondrial Disease Awareness Week Press Release

Five years ago, before MitoAction even existed as an organization, a family who is dealing with the diagnosis of mitochondrial disease may have been alone in their efforts to understand and find support and advocacy for the disorder.

Rocco, You're Not Alone

Cristy Balcells — Fri, 08 Aug 2008 04:13:01 -0700

Congratulations Rocco on making it to the World Series! We continue to offer our encouragement and support.

Original Post August 8, 2008

Tampa Rays MLB player Rocco Baldelli Living with Mitochondrial Disease

He's in the news. His symptoms are vague. He looks tired.

Mito Mom wears many different hats!

kayjay — Mon, 30 Jun 2008 07:10:50 -0700

Well today is no different from any other day when you have two children with Mitochondrial Disease ages 14 and 18. It is chaotic, tiring, inspirational, as well as challenging to say the least. Better get my hats ready!

Use Your Energy Wisely

admin — Wed, 05 Mar 2008 00:00:00 -0800

As family members, patients, and caregivers affected by mitochondrial disease we hear these words often. “Use your energy wisely.” We are advised to learn how to NOT exacerbate symptoms, reduce physical and emotional stressors and to elongate the use of our energy supplies.

Advice from a Disability Advocate

admin — Wed, 27 Feb 2008 00:00:00 -0800

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.”

Coping with your Child's Diagnosis

admin — Tue, 19 Feb 2008 00:00:00 -0800

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?
read more

Looking normal

admin — Sat, 16 Feb 2008 00:00:00 -0800

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?

Exercise - new research

admin — Sat, 05 Jan 2008 00:00:00 -0800

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

Dealing with Holiday Stress

admin — Fri, 07 Dec 2007 00:00:00 -0800

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)