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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. |