History of PWSA (SA) | Prader-Willi Syndrome Support (South Africa)

The Prader-Willi Syndrome Association of South Africa [PWSA (SA)] functioned since its establishment in 1990 as a formal association with a full-fledged service to its members. As the distribution of a relatively small number of families was spreading over a larger geographical area, it become increasingly difficult to compose a committee of willing members to cover all the responsibilities of the association. At the same time the convenience of interaction by means of social media developed to such an extent that alternative ways of service to members delivery became possible. Consequently, after thorough consideration, it was decided to convert the association to a support organisation primarily based on interaction with interested parties by means of a dedicated web page and Facebook page. A further outcome of the process was to shed all statutory requirements of the association. It was thus appropriate to change the name of the association to reflect the modified structure and responsibilities of the new organisation. The name of the association thus changes as from 1 April 2017 to Prader-Willi Syndrome Support South Africa [PWSS (SA)].

Die Prader-Willi-Sindroomvereniging van Suid-Afrika [PWSV (SA)] het sedert sy stigting in 1990, gefunksioneer as ‘n formele vereniging met ‘n volwaardige diens aan sy lede. Namate die verspreiding van relatief min gesinne ‘n groter geografiese area begin beslaan het, het dit toenemend moeiliker geword om ‘n komitee van gewillige lede saam te stel om al die verpligtinge van die vereniging te dek. Terselfdertyd het die gerief van interaksie deur middel van die sosiale media tot so ‘n mate ontwikkel, dat alternatiewe wyses van dienslewering aan lede moontlik geword het. Gevolglik is, na deeglike oorweging, besluit om die verening om te skakel in ‘n steunorganisasie wat primêr gebaseer is op interaksie met belanghebbendes deur middel van ‘n toegewese webblad en Facebookblad. ‘n Verdere uitvloeisel hiervan was ook om weg te doen met die statutêre vereistes van die vereniging. Dit was dus paslik om die naam van die vereniging te verander om die gewysigde struktuur en verantwoordelikhede van die nuwe organisasie te weerspieël. Die naam van die nuwe vereniging verander dus vanaf 1 April 2017 na Prader-Willi-Sindroomsteun Suid-Afrika [PWSS (SA)].

PWSA (SA) IS CELEBRATING 25 YEARS!

IT ALL BEGINS WITH THE PRADER-WILLI SYNDROME

In 1956 Professors Andrea Prader, Alexis Labhart and Heinrich Willi described nine children (five males and four females between the ages of 5 and 23 years) with increased weight, short stature, small hands and a low level of intelligence in a scientific publication. This abnormality was thereafter named as the Prader-Willi syndrome.


Anli Engelbrecht with Dr Andrea Prader (1919-2001) at the 2^nd International PWS Conference in Oslo, Norway, June 1995. Dr Prader gave the opening address. Anli is an honorary member of PWSA (SA).	Birgit Shröder-Hadsbjerg was the founder of the Prader-Willi Syndrome Association in South Africa in 1990 and led the association as chairperson until 1996. She was also the parent delegate to IPWSO until her decease in 1998.

PREVIOUS CHAIRPERSONS AND PROFESSIONAL DELEGATES TO IPWSO

Jeff

Terry Gordon and family joined the association in 1995 and Terry served as chairperson from 1998 – 1999. They immigrated to Australia in 2005 and currently live in St Ives, Sydney,

Australia

Jeff Donenberg served as chairperson from November 1996 -1998. Jeff and Hilary joined the association in 1995

Rika du Plooy was elected as chairperson in September 1999 and is since 2001
also parent delegate to IPWSO.

Dr Engela Honey

Prof Arnold Christianson served as professional delegate to IPWSO and medical advisor to PWSA (SA) from 1989 and resigned in 2003. He is currently at the Division of Human Genetics at the University of the Witwatersrand, Johannesburg.

After Dr A Christianson resigned, Dr Engela Honey was elected as the professional delegate of PWSA (SA) to IPWSO. Dr Honey is a paediatrician and a senior lecturer in the Department of Human Genetics at the University of Pretoria. She is also the medical advisor to PWSA (SA) and the clinic for persons with PWS is under her care.

FOLLOW PWSA (SA) OVER 25 YEARS!

1990	March	PWSA (SA) was founded on 12 March 1990 by a small group of concerned and dedicated parents whose children had been diagnosed with Prader-Willi syndrome. The Association owes its existence to the initiative of the late Birgit Schröder-Hadsbjerg and the five families who were present at that first meeting: Hadsbjerg, Kosir, Lake, Basson and du Plooy.
1991	May	The First International PWS Conference was held in Noordwijkerhout, Nederlands. Dr Andrea Prader was invited to this Conference and gave the opening talk.
1991	May	IPWSO was founded on 5 May 1991 at the First International PWS Conference held in the Netherlands. PWSA (SA) was represented by Birgit Schröder-Hadsbjerg and she was then elected on the first Board of IPWSO.
1993	January	Dr Arnold Christianson, then at the University of Pretoria started with research to establish a DNA diagnostic service for patients with PWS. His research was completed in 1998.
1995	June	2^nd International PWS Conference was held in Oslo, Norway. Dr Andrea Prader gave the opening address. Birgit Schröder-Hadsbjerg also attended this conference.
1998	April	Birgit Schröder-Hadsbjerg passed away April 1989. Her leadership was recognised, not only in South Africa but also internationally where she represented the PWSA (SA).
1998	May	3^rd International PWS Conference was held in Lido Di Jesolo, Italy. Five South African families attended as well as Dr Arnold Christianson who was then elected as professional delegate to IPWSO. David Gordon was elected as parent delegate.
1999	September	First South African Prader-Willi Conference was held at the University of Pretoria. Prof Martin Ritzen (Sweden) and Prof Louise Greenswag (USA) and others were the speakers.
1999	September	The Medical Multi Disciplinary Clinic for persons with PWS at UP was founded under the leadership of Dr Arnold Christianson.
2000	August	Seminar to celebrate the 10^th anniversary of PWSA (SA). The Seminar was in honour of the late Birgit Schröder-Hadsbjerg founder of PWSA (SA).
2001	June	The 4^th International PWS Conference, Saint Paul, Minnesota, USA. Attended by Dr Engela Honey, professional delegate to IPWSO and Rika du Plooy, who took the place of David Gordon as parent delegate.
2002	April	All parent and professional delegates were invited to an IPWSO meeting in Vicenza, Italy. Rika du Plooy attended this meeting.
2002	August	Workshop presented by Tammy Greyling on Life Skills for Children and Young Adults with special Educational and Training Needs.
2003	August	After Dr A Christianson resigned, Dr Engela Honey was elected as the professional delegate of PWSA (SA) to IPWSO. Dr Honey is a paediatrician and a senior lecturer in the Department of Human Genetics at the University of Pretoria.
2004	April	5^th International PWS Conference was held in Christchurch, NZ. Attended by Rika du Plooy, parent delegate to IPWSO.
2004	October	PWSA (SA) was registered as a Non-Profit Organisation.
2006	January	PWSA (SA) registered as a Public Benefit Organisation.
2007	June	6^th International PWS Conference was held in Cluj-Napoca, Romania. Attended by Rika du Plooy, parent delegate and Dr Engela Honey, professional delegate to IPWSO.
2009	June	www.praderwilli.org.za A new website for PWSA (SA)!
2010	May	7^th International Prader-Willi Syndrome Organisation Conference was held in Taipei, Taiwan. Attended by Rika du Plooy, parent delegate to IPWSO.
2010	August	Celebrating 20 years. Workshops presented by Linda Thornton in the Strand, Bloemfontein, Durban and Pretoria. “Understanding the person – understanding the syndrome”
2010	November	Willowton Oil celebrated their 40th Anniversary and PWSA (SA) was one of 40 charities that received R100 000
2013	July	8^th International Prader-Willi Syndrome Organisation Conference was held in Cambridge, United Kingdom. Attended by Rika du Plooy, parent delegate to IPWSO.
2014	October	Dr Janice Forster addressed professionals as well as parents at the Red Cross Children’s Hospital, Cape Town.
2015	March	PWSA (SA) was founded 25 years ago!
2017	March	PWSA (SA) has been an independent Non-Profit Organisation for the past 27 years; however, because of limited human capacity and resources it was decided by its members to dissolve the association. The decision was taken to merge with Rare Diseases South Africa and continue as the Prader-Willi Syndrome support group.