Beloved Sesame Street Icon Brings Awareness to Little-Known Brain Disorder

CHICAGO - Dec. 9, 2019 - On behalf of the dystonia community, the Dystonia Medical Research Foundation (DMRF) joins the world in mourning the loss of Caroll Spinney, whose iconic contributions to Sesame Street and popular culture as Big Bird and Oscar the Grouch will endure indefinitely.

A statement from Sesame Workshop announcing Spinney's death shared his struggle with dystonia, a little-known but surprisingly common movement disorder.

What is Dystonia?
Dystonia is a chronic movement disorder affecting the brain and nervous system.

Dystonia causes excessive, uncontrollable muscle spasms. The muscle spasms twist the body and limbs into involuntary movements and awkward postures.

Dystonia affects an estimated 250,000 people in the United States, and millions worldwide.

It is the third most common movement disorder after essential tremor and Parkinson disease.

Common dystonia symptoms include abnormal head and neck movements, excessive blinking, a breathy or strangled-sounding voice, hand cramps, and/or a twisted foot.

Dystonia can affect a specific part of the body or many muscles all over the body.

Causes include genetics, traumatic brain injury, drug reaction, and numerous neurological or metabolic diseases.

Dystonia typically does not shorten life span or cause death.

Dystonia affects adults and children of all ages.

Treatment options are available.

The Dystonia Medical Research Foundation (DMRF) is a non-profit organization founded in 1976 that supports dystonia research, promotes greater public awareness, and provides support resources to affected individuals and families. Information is available at https://www.dystonia-foundation.org and 800-377-DYST (3978).

Contact
Jessica Feeley

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