Understanding

Friedreich Ataxia

Friedreich ataxia (FA) is a rare genetic condition that causes progressive damage to the nervous system leading to impaired muscle coordination (ataxia) that worsens over time. It is the most common form of hereditary ataxia in the United States, affecting about 1 in every 50,000 people. The disorder is named after Nikolaus Friedreich, a German doctor who described the condition in the 1860s.

Friedreich ataxia adversely affects both the central and peripheral nervous systems.  This damage results in impaired sensory functions and uncoordinated movements. In addition, some patients may also develop problems with their heart and spine.  The onset of diabetes is another noted complication. The disorder does not affect thinking and reasoning abilities (cognitive functions).

Symptom onset is predominantly between the ages of 5 to 15 years of age. Disease progression is varied and differs from patient to patient.  However, within 10 to 20 years after the onset of first symptoms, most patients are confined to a wheelchair. As the disease progresses, patients become increasingly incapacitated and often have a reduced life expectancy.

 
 

Resources

Supporting Organizations

A diagnosis of Freidrich’s ataxia affects every facet of a patient’s life and while there are no treatments, supportive care is critical to helping the patient lead fuller lives. Connecting with advocacy groups can inform patients about experts in the field, support groups and ongoing research. Some organizations supporting patients diagnosed with muscular dystrophies are listed below. Inclusion on this list is not an endorsement by Nurturing Neurons Guild

 

 

P.O. Box 5801

Bethesda, MD 20824

Tel: 800-352-9424

Website: https://www.braininitiative.nih.gov/

 
 

P.O. Box 1537

Springfield, VA 22151

Email: fara@CureFA.org

Tel: 703-426-1576

Fax: (703) 425-0643

Website: https://www.curefa.org/index.php

 

4301 Connecticut Avenue, N.W.

Suite 404

Washington, DC 20008-2369

Email: info@geneticalliance.org

Tel: 202-966-5557; 800-336-GENE (4363)

Fax: 202-966-8553

Website: https://www.geneticalliance.org/

 

2600 Fernbrook Lane North

Suite 119

Minneapolis, MN 55447-4752

Email: naf@ataxia.org

Tel: 763-553-0020

Fax: 763-553-0167

Website: https://www.ataxia.org/

 

55 Kenosia Avenue

Danbury, CT 06810

Email: orphan@rarediseases.org

Tel: 203-744-0100; Voice Mail: 800-999-NORD (6673)

Fax: 203-798-2291

Website: https://rarediseases.org/

National Institutes of Health, DHHS

8600 Rockville Pike

Bethesda, MD  20892

Tel: 888-346-3656

Website: https://www.nlm.nih.gov/