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MitoAction Blog

by GingerD

At summer camp, Stephen Nielsen is just one of the guys … telling jokes, talking with friends, fishing, boating, and doing archery.

“Most kids just want to be seen as normal and a part of the crowd. But you don’t always get that when you have something different,” said Diane, Stephen’s mom.

Stephen’s mitochondrial disease makes him different from most – except at camp.

Aug 07, 2014 Comments: 0
by GingerD
Jubinvilles celebrate 10 years of MitoAction walks

Lori Jubinville of Chicopee, MA, was diagnosed with mitochondrial disease in June 2005. In September 2005, Lori and husband Mark attended the first MitoAction Energy Walk. This year, along with MitoAction, the couple will mark 10 years of walking to raise awareness about this devastating disease.

Aug 06, 2014 Comments: 0
by GingerD

One little girl is using the colors of the rainbow to raise awareness about mitochondrial disease, the disorder that affects her. Alyssa Curley, the heart and soul of Team Lissy Loo of the MitoAction Energy Walk & 5K, decided to make and sell rainbow loom bracelets to benefit MitoAction.

Aug 06, 2014 Comments: 0
by GingerD

The Mito Warrior of Fultonville, NY, will be in Boston for his very first MitoAction Energy Walk & 5K this year and hopes to meet other kids just like him.

He couldn’t attend last year’s walk because his friends and family were holding a benefit for him on the same day. Since his family and friends helped him, Ethan Allen, 9, wants to give back and help others. He is raising money for kids just like him who have mitochondrial disease by collecting bottles and cans. He will give all the proceeds to MitoAction on behalf of his team, Mito Warrior’s Platoon, to help Mito families.

Aug 06, 2014 Comments: 0
by Cristy Balcells

What is the impact of illness or infection on a patient with mitochondrial disease?

Jul 24, 2014 Comments: 0
by Cristy Balcells
Oxidative Stress and Mitochondrial DysfunctionJoin us Friday, May 2nd 2014 for an informative discussion with Dr. Richard Frye, Director of Autism Research and Director of the Autism Multispecialty Clinic at Arkansas Children's Hospital Research Institute.There is increasing evidence that mitochondrial dysfunction is associated with autism spectrum disorder.
Apr 29, 2014 Comments: 6
by Christine Cox

As media coverage of the Justina Pelletier case has grown, so has the misconception that mitochondrial disease is closely correlated with medical child abuse and its predecessor diagnosis, Munchausen’s Syndrome by Proxy. On behalf of MitoAction and the mitochondrial disease patients we represent, we are extremely troubled by this development and wish to highlight the obvious differences between mitochondrial disease and medical child abuse.

Apr 16, 2014 Comments: 0
by Cristy Balcells
Understanding the mechanisms of mitochondrial deafnessJoin us this month with Dr. Peter Kullar, Clinical Research Fellow at the Wellcome Trust Research Centre for Mitochondrial Disease at Newcastle University (UK) to learn about mitochondrial disease and hearing loss.
Apr 02, 2014 Comments: 0
by Cristy Balcells

Dysmotility: abnormal contractions of the bowel, which slows or impairs digestive emptying and may cause symptoms such as pain, nausea, bloating, diarrhea, constipation or vomiting. Dysmotility can be caused by abnormalities of the muscles of the intestine (myopathy) or by abnormalities in the nerves in the intestine which control the muscles (neuropathy). For children and adults with mitochondrial disease, dysmotility is common and can be due to muscle myopathy and/or autonomic nervous system dysfunction (dysautonomia).

Feb 27, 2014 Comments: 0
by GingerD
A weekend of education, support, and awareness

MitoAction hosted the Mitochondrial Disease Clinical Conference LA and the LA Mito Patient & Family Social on Feb. 8-9, 2014.It was an amazing weekend for everyone involved!

Feb 13, 2014 Comments: 0

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