Through
the Magazine and Annual Conference, and the meetings of Family Support Groups, parents
are able to contact each other and exchange information and people with PWS are
provided with opportunities to meet and discuss their condition with someone
who can really understand them.
Most important of all,
through the work of the office, backed up by a team of parents and
professionals, the PWSA(UK) provides knowledgeable and sympathetic help and
assistance to people with PWS and to all who are involved with them. That
support might just be an understanding ear, or it might be the provision of
some medical advice, or it might be an advocate to support a challenge about
educational, residential or financial provision for the person with PWS.
The Association
publishes books and leaflets about the genetic background of PWS, the clinical
and behavioural problems that accompany it, dietary and behaviour management,
and about many other aspects of living with the Syndrome, both for those who
have it and for the members of their families.
Several times a year,
Training Days are organised for parents and for the carers whose professional
skills will be needed to help the child with PWS grow and thrive throughout
their life.
We have provided this
Web site as a further, easy source of information so that as many people as
possible can find out about the syndrome. If you know of families with a person
with PWS, please tell them of the site or show it to them.
With some financial
difficulty, we provide limited start-up funding for research into the syndrome,
and the alleviation of its symptoms, and we support and publicise much of the
current research in the United Kingdom and Ireland.
And, of course, we
increasing act as the first point of contact for many people confronting
Prader-Willi Syndrome for the first time.
West Midlands: Rob and Jane Ryder 01543
467860
North East: Tony Waite 01642 535268
Northern Ireland: Len Bartlett 028 91 819161
Scotland: John and Moira Wright 01506 501075
Ireland: Lena Lawlor 00 3531 286 8119
London Under 8s: Kate Grussing 0207 352 0622
Bournemouth: Chris Easton 01202 886246
Parents/carers of new babies: Liz Ball 01767 650595
Email network for parents/carers of under 5s: michele.harrison@uk.sts.se