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The Prader-Willi Syndrome Association of
The
Prader-Willi Syndrome Association of South Africa was formed in March 1990 by a
small group of concerned and dedicated parents whose children had been diagnosed
with Prader-Willi syndrome. The late Birgit Schroder-Hadsbjerg took the
initiative and the association was founded. At that time knowledge about the
diagnosis and treatment of persons with PWS was very scant and not freely
available. Since then the association has grown in numbers and is fortunate to
be part of a worldwide network of information on PWS involving international
professionals and families.
The main aims
of the association are as follows:
To
provide support to parents and caregivers of individuals with PWS. To ensure
that parents never have to face the future with a child with PWS alone, that
there are always people willing to share in parents’ fears, frustrations
and successes.
To
promote knowledge and awareness of the syndrome among the general public and
the medical and paramedical professions.
To
improve the care given and the quality of life of all individuals with PWS.
Activities
of the association
The
association publishes a newsletter People
With Strength through which members or those interested are updated with
news in general and also on the latest development in the field of the
syndrome.
The
association disseminates important educational material, such as information
provided by IPWSO, to its members and others involved.
The
association takes care that members receive Wavelength,
the newsletter of the International Prader-Willi Syndrome Organisation.
From
time to time the association organizes workshops, seminars or conferences to
address the latest research and the effective management of PWS.
An
annual general meeting is held where official matters are handled and at the
same time, parents get the opportunity to socialise and share their ideas
and experiences with other parents in the same situation.
Support
services
A
clinic for persons with PWS functions under the leadership of Dr Engela
Honey, at the Department of Genetics, Division Human Genetics at the
Contact details:
Tel. +27 (0)12 319 2269 or email: ehoney@medic.up.ac.za
The
association provides information and educational material, including
publications and audiovisual presentations, to parents and others who are
interested in the syndrome, on request.
We
invite all people involved with Prader-Willi syndrome, including parents, family
members, friends, professionals, caregivers and other interested supporters, to
become members of the association.
PWSA
(SA) is financed solely by membership fees and donations and is totally run by
volunteers.
You
are welcome to join the Prader-Willi Syndrome Association. The effective
management and future of the Prader-Willi Syndrome Association depends on the
availability of funds. Paid-up members are entitled to the election of the
management committee, which is responsible for furthering the aims of the
Association. The management committee strives to keep members updated on the
latest developments in the field of the syndrome in order to improve the care
given to individuals with Prader-Willi syndrome.
If
you cannot afford to pay membership fees, please feel free to register as a
member for the amount of R50.00. You will then receive the newsletter and other
important information. The PWSA (SA) is committed to support everybody concerned
and to improve the care given to people with Prader-Willi syndrome.
Payment can
either be by cheque, direct deposit or internet banking
Please
use your surname as reference.
A receipt will be issued.
Registration
fee R50.00 (one-off payment)
Annual
membership fee R200.00
Outside
RSA R220.00
|
Make payment
to: |
Send or fax poof of payment to: |
|
Prader-Willi
Syndrome Association (SA) |
The
treasurer |
|
ABSA
|
PWSA
(SA) |
|
Branch
code 632005 |
|
|
Savings
account 113641800 |
|
|
Surname
as reference |
0075 Fax
086 551 5980 |
Thank you for
your co-operation and support.
Should you wish
to join the PWSA (SA), please complete the MEMBERSHIP FORM and submit.
Alternatively print the form, complete and mail or fax it to: The
secretary,
All
information supplied is treated confidentially!
Click here for the MEMBERSHIP FORM
WOULD
YOU LIKE TO MAKE A DONATION?
PWSA
(SA) is financed solely by membership fees and donations and is totally run by
volunteers. Would you like to support us? With your help we can make a
difference!
PWSA
(SA) is registered as a non-profit organisation (No. 035-837 NPO) as well as a
public benefit organisation (PBO Exemption no.930 016 853). The PBO registration
benefits donors and all donations made to PWSA (SA) are tax deductable.
We
will issue an official certificate for donations of R100.00 or more.
You
are welcome to make a direct deposit.
Please
ensure that your cell number is
included as reference.
Bank
details of savings account:
PRADER-WILLI
SYNDROME ASSOCIATION (SA)
Branch:
ABSA BROOKLYN,
Branch
code 632005
Acc. no. 113641800