Our Mission

“The mission of The Kurt B. Seydow Dystonia Foundation is to promote education and awareness of Dystonia among the general public and medical community; to advance medical research to ultimately find a cure, and to support the Dystonia Community at large.”

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Swimming for a Cure

The Kurt B. Seydow Dystonia Foundation is proud to be an honored recipient of Minnesota-based swimmer, Matt Montgomery’s “Open Water Swim for Dystonia”! Matt will be swimming this year’s annual, Point to La Pointe in Lake Superior on July 29 th , 2017. A 2.1 mile... read more

What are the Symptoms of Dystonia?

neck-painsm2Dystonia can affect many different parts of the body, and the symptoms are different depending upon the form of dystonia. Early symptoms may include a foot cramp or a tendency for one foot to turn or drag—either sporadically or after running or walking some distance—or a worsening in handwriting after writing several lines.  In other instances, the neck may turn or pull involuntarily, especially when the person is tired or under stress. Sometimes both eyes might blink rapidly and uncontrollably; other times, spasms will cause the eyes to close.  Symptoms may also include tremor or difficulties speaking.  In some cases, dystonia can affect only one specific action, while allowing others to occur unimpeded.  For example, a musician may have dystonia when using her hand to play an instrument, but not when using the same hand to type.  The initial symptoms can be very mild and may be noticeable only after prolonged exertion, stress, or fatigue.  Over a period of time, the symptoms may become more noticeable or widespread; sometimes, however, there is little or no progression. Dystonia typically is not associated with problems thinking or understanding, but depression and anxiety may be present.

What Causes Dystonia?

what-causes-dystonia-IIIThe cause of dystonia is not known. Researchers believe that dystonia results from an abnormality in or damage to the basal ganglia or other brain regions that control movement. There may be abnormalities in the brain’s ability to process a group of chemicals called neurotransmitters that help cells in the brain communicate with each other.  There also may be abnormalities in the way the brain processes information and generates commands to move.  In most cases, no abnormalities are visible using magnetic resonance imaging or other diagnostic imaging.

When Do Symptoms Occur?

Dystonia can occur at any age, but is often described as either early, or childhood, onset versus adult onset. Early-onset dystonia often begins with symptoms in the limbs and may progress to involve other regions. Some symptoms tend to occur after periods of exertion and/or fluctuate over the course of the day. Adult-onset dystonia usually is located in one or adjacent parts of the body, most often involving the neck and/or facial muscles. Acquired dystonia can affect other regions of the body. Dystonias often progress through various stages. Initially, dystonic movements may be intermittent and appear only during voluntary movements or stress. Later, individuals may show dystonic postures and movements while walking and ultimately even while they are relaxed. Dystonia can be associated with fixed postures and shortening of tendons.

Dystonia Classifications

One way to classify the dystonias is based upon the regions of the body which they affect:

  • Generalized dystonia affects most or all of the body.
  • Focal-dystonia is localized to a specific part of the body.
  • Multifocal-dystonia involves two or more unrelated body parts.
  • Segmental-dystonia affects two or more adjacent parts of the body.
  • Hemidystonia involves the arm and leg on the same side of the body.

Primary dystonia is used to describe a case in which the dystonia is the predominant symptom, and the person is not affected by other neurological conditions. Secondary dystonia refers to dystonia that is associated with a known outside factor or condition (such as trauma, drug exposure, stroke, cerebral palsy, and others).

What Treatments are Available?

Currently, there are no medications to prevent dystonia or slow its progression.  There are, however, several treatment options that can ease some of the symptoms of dystonia, so physicians can select a therapeutic approach based on each individual’s symptoms.  In most cases, the type of doctor who is typically trained to diagnose and treat dystonia is a movement disorder neurologist. Otolaryngologists, neuro-ophthalmologists, physiatrists and ophthalmologists may also treat focal dystonias that fall under their practice and specialties. Learn about treatments….

Help Us Help Them

Your gift to The Kurt B. Seydow Dystonia Foundation will fund public and clinical awareness and education, research toward a cure, and dystonia community programs. The Kurt B. Seydow Dystonia Foundation is registered as a 501(c)(3) non-profit organization. Contributions to the Kurt B. Seydow Dystonia Foundation are tax-deductible to the extent permitted by law. Please consult your tax advisor.



Become a member today. Annual membership starts at only $15 per year* and includes our “Heroes Newsletter” (delivered electronically three times per year), a lapel pin, magnet or wrist band** and an information packet. Proceeds benefit the Dystonia Community, education and research efforts.

*2-year membership

**based on current inventory

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“Yesterday I lived with a disability and focused on the things I can’t do. Today I live with a Thisability and focus on the things I can.”

 Kurt B. Seydow, Dystonia Patient and Honoree

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