Mitochondrial Disease Awareness Week

[Guest guest]

Mitochondrial dysfunction plays a major role in CFIDS, CFS, ME, FM and

other such conditions.

Many states have 'official' Mitochondrial Disease Awareness weeks -

declared as the 3rd week in September to raise awareness for

Mitochondrial Diseases.

This event is to spread awareness on Mitochondrial Disease wherever YOU

are located. :]

• Every 15 minutes a child is born that will develop mitochondrial

disease by age 10.

• It is estimated that of the 4 million children born each year in

the United States, up to 4000 develop mitochondrial diseases.

• At least 1 in 200 individuals in the general public have a

mitochondrial DNA mutation that may lead to disease.

• There are over 40 identified types of Mitochondrial Diseases and

believed to be over 100 variants of mitochondrial diseases, .

• In the United States, more than 50 million adults suffer from

diseases in which mitochondrial dysfunction is involved. Mitochondrial

dysfunction is found in diseases as diverse as cancer, infertility,

diabetes, heart diseases, blindness deafness, kidney disease, liver

disease, stroke, migraine, and the toxicity of HIV and other drugs.

Mitochondrial dysfunction is also involved in aging and

neurodegenerative diseases such as Parkinson and Alzheimer dementia.

• The World Health Organization (WHO) calculates that

neurodegenerative diseases, also associated with mitochondrial

dysfunction, will become the world's second leading cause of death by

the year 2040.

Great Resources available online include:

• MITO 101: A Primer for Physicians and Patients -

http://www.umdf.org/site/c.dnJEKLNqFoG/b.4585961/k.C6AC/MITO_101.htm

<http://www.umdf.org/site/c.dnJEKLNqFoG/b.4585961/k.C6AC/MITO_101.htm>

• Clinician's Mito Symptom Guide-

http://www.mitoaction.org/symptom-guide-clinicians

<http://www.mitoaction.org/symptom-guide-clinicians>

United Mitochondrial Disease Foundation: http://www.umdf.org

<http://www.umdf.org/>

• MitoAction (Mitochondrial Disease Action Committee):

http://www.mitoaction.org <http://www.mitoaction.org/>

• Muscular Dystrophy Association: http://www.mda.org

<http://www.mda.org/>

• Fatty Acid Oxidation Disorders (FOD) Support Group:

http://www.fodsupport.org <http://www.fodsupport.org/>

• Organic Acidemia Association: http://www.oaanews.org

<http://www.oaanews.org/>

• European Mitochondrial Disease Network:

http://www.emdn-mitonet.co.uk <http://www.emdn-mitonet.co.uk/>

• Australian Mitochondrial Disease Foundation:

http://www.amdf.org.au <http://www.amdf.org.au/>

• Marcel's Way: http://www.marcelsway.org

<http://www.marcelsway.org/>

• Eli's Angels: http://elisangels.net <http://elisangels.net/>

RESEARCH GROUPS:

• Mitochondria Research Society: http://www.mitoresearch.org

<http://www.mitoresearch.org/>

• National Organization of Rare Disorders:

http://www.rarediseases.org <http://www.rarediseases.org/>

• Indian Society for Mitochondial Research and Medicine:

http://www.inmit.org <http://www.inmit.org/>

• European Organization of Rare Disorders: http://www.eurordis.org

<http://www.eurordis.org/>

• Mitochondria Interest Group:

http://sigs.nih.gov/mito/Pages/default.aspx

<http://sigs.nih.gov/mito/Pages/default.aspx>

• Mitochondrial Medicine Society: http://www.mitosoc.org

<http://www.mitosoc.org/>

• Mitochondrial Physiology Society: http://www.mitophysiology.org

<http://www.mitophysiology.org/>

• American College of Medical Genetics: http://www.acmg.net

<http://www.acmg.net/>

• Society for Inherited Metabolic Disease: http://www.simd.org

<http://www.simd.org/>

• Society for the Study of Inborn Errors of Metabolism:

http://www.ssiem.org <http://www.ssiem.org/>

GENETIC TESTS & RESOURCES:

• GeneTests: http://www.ncbi.nlm.nih.gov/sites/GeneTests/

<http://www.ncbi.nlm.nih.gov/sites/GeneTests/>

• Baylor College of Medicine, Medical Genetics Laboratories:

http://www.bcm.edu/geneticlabs/index.html

<http://www.bcm.edu/geneticlabs/index.html>

• MITOMAP A human mitochondrial genome database:

http://www.mitomap.org/ <http://www.mitomap.org/>

• Mitoland: A Handbook for Patients and Parents

http://www.mitosoc.org/blogs/wp-content/uploads/docs/mitoland.pdf

<http://www.mitosoc.org/blogs/wp-content/uploads/docs/mitoland.pdf>

• MITO 101: A Primer for Physicians and Patients -

http://www.umdf.org/site/c.dnJEKLNqFoG/b.4585961/k.C6AC/MITO_101.htm

<http://www.umdf.org/site/c.dnJEKLNqFoG/b.4585961/k.C6AC/MITO_101.htm>

• Mitochondrial pathways:

http://neuromuscular.wustl.edu/pathol/diagrams/mito.htm

<http://neuromuscular.wustl.edu/pathol/diagrams/mito.htm>

• IUBMB-Nicholson Metabolic Maps, Minimaps & Animaps:

http://www.iubmb-nicholson.org <http://www.iubmb-nicholson.org/>