Mitochondrial Myopathy

Christopher Van Nostrand

Location

Columbia, MD

Chris created this mask at age 8 at an MDA-sponsored children’s art workshop held October 30, 1993, at the National Museum of American Art, Smithsonian Institution, Washington D.C. He and his twin brother, Daniel, served as MDA’s Maryland State Goodwill Ambassadors in 1995 and 1996.

Full name: 
Christopher Van Nostrand

Martin Lauer

Location

Olathe, KS

Martin became interested in drawing in high school. He constantly was “doodling” on any type of paper with colored pencils, pens or markers. Doodling became his therapy. It usually takes Martin four to six months to complete a work. He attempts to invoke happiness, pleasure and well-being in each of his pieces.

Full name: 
Martin Lauer
Artist: 
Martin Lauer
Disease: 
Mitochondrial Myopathy
Medium: 
Prisma Colored Pencil

Christine O'Brien

Location

Iowa Falls, IA

Chris has been painting for several years and is a member of the Iowa Watercolor Society. Her works have been exhibited in several states and some of her pen-and-ink drawings have been used for book illustrations.

Full name: 
Christine O'Brien
Artist: 
Christine O'Brien
Disease: 
Mitochondrial Myopathy
Medium: 
Watercolor

Living With

Dear Friends:

If you are reading this, it’s probably because you or a loved one has just received a very bewildering diagnosis: mitochondrial myopathy. What is a mitochondrial myopathy, and what does the term mean?

Richard Kelly with family
The Kelly family at the MDA Labor Day Telethon

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Clinical Trials

About clinical trials

A clinical trial is a test in humans of an experimental medication or therapy. Clinical trials are experiments, not treatments, and participation requires careful consideration.

Although it's possible to benefit from participating in a clinical trial, it's also possible that no benefit — or even harm — may occur. Keep your MDA clinic doctor informed about any clinical trial participation. (Note that MDA has no ability to influence who is chosen to participate in a clinical trial.)

Research

With MDA’s support, scientists continue to make significant progress in their quest to fully understand and treat mitochondrial diseases.

Unique progress has been made in MNGIE, a disease in which a flaw in a gene in the nucleus indirectly causes a mitochondrial problem. MDA-funded researchers are experimenting with infusing donor stem cells into patients with MNGIE to restore normal metabolic conditions and halt damage to the mitochondria.

Medical Management

While mitochondrial myopathies and encephalomyopathies are relatively rare, some of their potential manifestations are common in the general population. Consequently, those complications (including heart problems, stroke, seizures, migraines, deafness and diabetes) have highly effective treatments (including medications, dietary modifications and lifestyle changes).

Causes/Inheritance

What causes mitochondrial diseases?

Mitochondrial diseases aren’t contagious, and they aren’t caused by anything a person does. They’re caused by mutations, or changes, in genes — the cells’ blueprints for making proteins.

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