MitoAction Blog

by Cristy Balcells
What is the mitochondrial disorder PDCD?PDCD is an abbreviation for pyruvate dehydrogenase complex deficiency, a genetic mitochondrial disorder in children which is frequently associated with lactic acidosis and neurological/neuromuscular symptoms. Join us Friday November 7th, 2014 with Dr. Peter Stacpoole from the University of Florida to learn about testing, diagnosis and treatment of PDCD.

(From Dr. Stacpoole's Benefunder Research page)

Oct 20, 2014 Comments: 0
by Cristy Balcells
Join us this month with Dr. Andrew Nierenberg from Massachusetts General Hospital to learn more about Psychiatric Disorders in Mitochondrial Diseases and Mitochondrial Dysregulation in Psychiatric Disorders.
Sep 26, 2014 Comments: 0
by GingerD

KINGSPORT, TN -- The Castle family’s goals are simple: raise awareness about mitochondrial disease, move forward, and live.

They count their blessings and thank God for all that they have, especially Cooper. “Cooper is here because of the hand of the Lord,” Chris Castle said about his 6-year-old son.

Cooper coded when he was 12 hours old, starting this Fall Branch, TN, family’s mitochondrial disease odyssey. 

Sep 11, 2014 Comments: 0
by GingerD

Aug 25, 2014 Comments: 0
by GingerD

BALTIMORE, MD —Charlie Bainbridge is a real daredevil. The Catonsville, MD, boy who is battling mitochondrial disease is the inspiration behind “Charlie B's Daredevils,” a team of 22 walkers who will return for the fifth consecutive year to walk in MitoAction’s Energy Walk and 5K in South Boston, MA, alongside other families and patients affected by mitochondrial disease.

Aug 24, 2014 Comments: 0
by GingerD

Stephanie Deady is a little apprehensive about attending her first MitoAction Energy Walk & 5K. It’s been a whirlwind year since her son, Logan, was diagnosed with mitochondrial disease and she still hasn’t processed it all.

“Being around so many people with similar issues makes it so real,” said the North Providence, RI, mom.

“I wake up and I just do it. I just move forward, because I have to. When I stop and think about it, the tears will come. I want to meet other people, but I don’t want to cry.”

Aug 20, 2014 Comments: 0
by GingerD

DERRY, NH –Amy and Jason Marquis’ daughter was given a death sentence. Riley, also known as Little Miss Roo, has Leigh’s Disease, one of the most devastating forms of mitochondrial disease.

Aug 11, 2014 Comments: 0
by GingerD

Every year, Rita Cerruti makes more than 300 mitochondrial disease awareness ribbons to hand out at the MitoAction Energy Walk & 5K. And every year, they are gone in minutes!

It’s just one way Rita, 82, a lifelong crafter, raises awareness about the disease that affects her daughter, Lisa, team captain of LC’s MitoBusters. “Making these things is my way to raise awareness,” Rita said.

Aug 08, 2014 Comments: 0
by GingerD

It’s DisneyLand. Plain and simple. For 11-year-old Jade Stratton, Camp Korey is her idea of DisneyLand.

“That’s how much she loves it,” said her mom, Jennifer. “It brings out a part of her where she’s sparkling and happy and joyful after camp. It’s incredible.”

Aug 07, 2014 Comments: 0
by GingerD

For one week every summer, Gwenn Peterson is just a typical kid. She goes to camp, where she meets her friends and does her own thing.

“That’s worth gold,” her mom, Lara, said. 

Gwenn, 15, has a clinical diagnosis of mitochondrial disease. She has GI, energy, muscle, and neuro-psych issues. She uses a wheelchair part of the time to conserve her energy. Her muscles are getting weaker. And she’s on a lot of medications.

Aug 07, 2014 Comments: 0

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