Fundacion Distonia (Dystonia)

The Fundacion Distonia (Dystonia) is a non-profit organization in Chile dedicated to providing information, support, and resources to individuals affected by dystonia, a group of neuromuscular disorders characterized by abnormal muscle rigidity that results in involuntary muscle spasms, abnormal movement patterns, and/or unusual fixed positioning of affected muscles. Dystonia may involve a particular area of the body (focal dystonia) or may be more generalized. Fundacion Distonia was established in 1997 and currently consists of approximately 145 members. The organization is committed to promoting awareness of dystonia among affected individuals and family members, health care professionals, and the general public; engaging in patient advocacy; and conducting support groups for individuals with dystonia and their family members. Fundacion Distonia also has a program to provide free botulinum toxin therapy to affected individuals who cannot otherwise afford such treatment. During such therapy, minute amounts of a toxin produced by the bacteria Clostridium botulinum (botulinum toxin) are injected directly into affected muscles, causing temporary muscular paralysis, thereby preventing spasms and abnormal contraction associated with dystonia. Fundacion Distonia also has informational brochures, a regular newsletter, and a web site on the Internet. The organization’s materials are provided in Spanish and French.