About 130 people turned out Saturday at the Holtsville Wildlife & Ecology Center to walk to raise money for a cure for a rare, debilitating movement disorder.

Long Island Dystonia Zoo Day raised at least $13,000 for the Dystonia Medical Research Foundation, event organizer Linda Davis said.

The turnout pleased Davis, a dystonia sufferer and the owner of a Medford printing business.

“The turnout was double what we had last year, and everybody’s contributions and support were just amazing,” Davis said. “We raised almost $10,000 last year and we raised over $13,000 so far this year.”

Dystonia is a painful movement disorder which causes uncontrolled muscle movements or contractions. It can affect various parts of the body, including the neck, limbs, eyelids, facial muscles and vocal chords.

There is currently no known cure for the condition, which affects about 250,000 men, women and children in the U.S.

For Davis, 62, it’s been a long and difficult journey since she was diagnosed with dystonia 15 years ago. It started in her neck and has spread to her shoulders, back and feet.

Despite that, Davis owns her own small business and organizes the annual dystonia walk.

Janet Hieschetter, executive director of the Dystonia Medical Research Foundation, who was on hand for Saturday’s walk, called Davis “a dystonia warrior.”

Walks like the one on Saturday are important not only to raise money for research, but to raise awareness and provide an opportunity to meet others with the same condition, Hieschetter said.

“It helps us get the word about this rare disorder.” Hieschetter said.

Dystonia can be isolating for those with the condition, she said, “so it’s important to know that there are other people in this community and connect them together.”

Two state lawmakers who attended Saturday’s walk have worked to increase the focus on dystonia.

State Sen. Dean Murray and assemblyman Joe DeStefano each introduced legislation in his respective chamber to declare September Dystonia Awareness Month in New York.
As for Davis, she plans to build on the success of this year’s walk.

“We start planning the 2025 Zoo Walk, and we continue raising awareness and we continue raising funds for research for a cure,” she said.