The cerebellar ataxias, along with Friedrich's Ataxia, encompass a group of neurodegenerative diseases for which there is currently no effective treatment or therapy. This lack of effective treatment results in not only the progressive degeneration of neuro-muscular function, but also contributes to the progressive degradation of purposeful movement skills. Inevitably, as the afflicted persons mobility becomes more problematic, these patients can no longer hide their condition from themselves, the public, or their employers. Subsequently, these patients suffer a decline in their mobility, career opportunities, financial independence and social interaction.
While these changes appear to be inevitable and have been known for years, the ataxic person continues to find themselves feeling very much alone in their struggle with their unique problems. They have few resources, are confused with how to deal with what is happening to them and they are often geographically isolated with few, if any, resources to help them.
In part, the patients themselves have addressed their feeling of isolation through the formation of support groups where they share information and mutual support. We are fortunate to have an outstanding support group within our community, the West Central Florida Ataxia Support Group, which provides a valuable connection for these patients and their families.
We recognize the importance of furthering patient education and patient involvement in the care and treatment of these devastating disorders. The Ataxia Outreach Center's purpose is to provide ongoing educational and therapeutic programs for the ataxia community and further the effectiveness of the Ataxia Research Center. Specialists reaching out to the ataxic community, providing valuable resources, enabling those affected by these disabling disorders to aspire to an improved quality of life.