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Monthly Mito Expert Series

by Cristy Balcells

Is there hope for a cure for Mitochondrial Disease? Perhaps the answer is closer than we thought.

2010 UPDATE: Penwest announces Iniation of Phase IIa Clinical Trial in patients with Frederich's Ataxia

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Jul 19, 2008 Comments: 1
by Cristy Balcells

July 11, 2008

MitoAction welcomed Dr. Irina Anselm, pediatric neurologist and head of the mitochondrial disease clinic at Children's Hospital Boston to discuss the topic of pain for patients with mitochondrial disease at our monthly international teleconference.

Listen to the audio recording

Jul 13, 2008 Comments: 3
by Cristy Balcells

Listen to the audio recording of this meeting

When a person is diagnosed with cancer, several keywords probably come to mind. Chemotherapy, metastasis, remission, radiation...and pain.

What are the keywords we automatically refer to when we hear "mitochondrial disease"?

"Mito...what?"

Jun 30, 2008 Comments: 0
by kayjay

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!

Jun 30, 2008 Comments: 3
by Cristy Balcells

 

Too many doctors? Coordinated care for the patient with a mitochondrial disorder.

 

Based on the MitoAction international teleconference meeting held June 6, 2008

Listen to the audio recording here

 

Jun 09, 2008 Comments: 1
by kayjay

It is with great pride and sincerity that I ask all members, families and friends of MitoAction to please congratulate and recognize the following mitochondrial disease patients, moms, care providers and supporters of MitoAction who so quietly and humbly volunteered 1000's of hours so that Mito Families, could have a place to go to when they wanted to obtain more information about Mitochondrial Disease and educating their children and loved ones.&nbs

Jun 02, 2008 Comments: 0
by Anonymous

Sandra Russell is a mother of two boys, ages 22 and 18. It's no wonder she's tired after raising two boys, with her husband Gordon, and co-owning and running a chain of retail stores. But her fatigue was more than the norm, says Gordon. "The first noticeable symptom was her hearing loss, and she had trouble keeping up with the busy pace of our life. I became frustrated with this as I felt like I was always having to remind her of the tasks she was supposed to be doing."

May 27, 2008 Comments: 1
by Anonymous

Six year old Janis enjoys life in Maine with her adoptive parents Tom and Karen Kohlmeyer.. She was born with the inability to tolerate food and ended up with a fundoplication and a G tube at the weight of just over 9 pounds. She was abandoned at the hospital but soon after embraced by a loving family.

May 27, 2008 Comments: 6
by Cristy Balcells

Many adults and children with mitochondrial disease find that they are overwhelmed by multiple specialists. The cardiologist, the gasteroenterologist, the endocrinologist, the neurologist as well as the pediatrician and the metabolic specialist are all expected to coordinate care for the patient and his or her confusing array of symptoms. In reality, the patient (or parent) too often becomes the gatekeeper of all the information, and are frequently frustrated by the challenges of coordinating multiple specialists.

May 21, 2008 Comments: 0
by admin

What is heat intolerance, dysautonomia, and why is it such an important issue for people with mitochondrial disease?

Listen to the recording of the May 2, 2008 meeting

May 06, 2008 Comments: 0

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