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Annual ceremony keeps ataxia in the public eye

Posted: September 24, 2012 at 7:10 am

Mary Jane Damiano poses at her "Proclamation Wall" located in her home. She holds the 2010 joint proclamation from County Executive Joanie Mahoney and Syracuse Mayor Stephanie Miner.

North Syracuse So that their condition is not forgotten, people afflicted with a disease commonly known as ataxia, along with families and friends, observe a national day that brings attention to the affliction and to the need for research to find a cure. Spearheading the observance locally is Mary Jane Damiano of North Syracuse, who has a hereditary version of the crippling affliction known as Friedreich's ataxia.

Damiano will again host a ceremony marking the 2012 International Ataxia Day at 1 p.m. Sept. 22 at the North Syracuse Community Center, 700 South Bay Road. Each year, elected leaders from the community, county and state send proclamations recognizing the disease and the need for research to find a cure. A candle is lit symbolizing hope and unity in the fight against Ataxia.

The public is invited to the ceremony. Refreshments will be served.

This year, people can also bring used cell phones to the ceremony for recycling. Proceeds from this will go to ataxia research through the National Ataxia Foundation.

Damiano is leader of the Central New York Ataxia Support Group. Even while confined to a wheelchair and having her own difficulties with muscle and nervous system coordination, Damiano is determined to bring her ailment to the attention of the community. Because of its similarity to muscular dystrophy, the Muscular Dystrophy Association locally and nationwide helps support people afflicted with ataxia. More information on ataxia is available on the web at ataxia.org/chapters/CentralNewYork/default.aspx.

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Annual ceremony keeps ataxia in the public eye

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