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Management Committee:
Chairperson - Mrs.
Hilary Storer
Vice-chairperson -
Mrs. Heather
Gordon-Cotterill
Treasurer - Mr. Eugene
Schulman
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Office
Staff:
National Director -
Mrs. Gisela Stanek
Administrator - Mrs. Sigi Channer
Admin Asst - Ms. Dorothy Maraya
Medical Advisor:
Neurologist - Dr Johan Smuts |
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The
Dystonia Association was formed in November 1993 with the objective of
offering support and encouragement to people who suffer from this often
very debilitating illness, and their carers.
We
have over 500 members nationwide who each receive a quarterly newsletter.
The newsletter gives information about the various types of
Dystonia, encourages members to form support groups so that they do not
feel isolated, to socialise and to learn as much as possible about their
condition. They are given tips on coping on a daily basis; case histories
and members’ letters are published.
We
exchange our information with other similar organisations in Canada, the
USA, Australia, France and the UK.
Support
groups meet from time to time when speakers are invited to talk on a
variety of topics concerning the management of the illness. Depression can
be a very real problem, largely because it can take years to find a doctor
who recognises the illness. It
is often misdiagnosed, and sufferers go from pillar to post desperately
seeking the reason for their sometimes strange symptoms.
We
have an ongoing awareness campaign to make the general public and the
medical profession aware of the needs of Dystonia sufferers.
These
are - to be referred to a doctor who has knowledge of the condition for
early and correct diagnosis, suitable treatment and on-going support in
the management of this often very debilitating chronic illness.
We
also hope that in the future as our membership and financial base grows,
we will be able to contribute towards the research
which is taking place around the world to find the cause, and
ultimately the cure for Dystonia.
We
are a registered non-profit organisation, and obtain our funding through
our own efforts.
Donations may be made to
Standard Bank Hyde Park, A/c No
022 255 117, branch code 00 66 05.
Current Sponsors - National Lottery Distribution
Trust Fund, ETV, MNet, Caxton Press, Community Radio programmes etc. |
