Best Practice Standards and Guidelines for Care of those with PWS

Caregivers Conferences:

Akadamie Mont-Cenis Conference Center

In 2008 and again in 2009, IPWSO, with the Regens-Wagner Absberg Centre and Wittekindshof Centre, jointly hosted the first and second specialised Caregivers' Conferences in Herne, Germany.  These conferences were the brainchild of Pam Eisen, Hubert Soyer, and Norbert Hödebeck-Stuntebeck and at their invitation a group of residential specialists, teachers, and medical specialists met to hammer out a set of Best Practice Guidelines and Standards of Care for those with PWS.

 

Pam in 2007 opening the conference

 We did this in the manner of lectures followed by workshops where the topic of the lecture was discussed in depth.  We shifted around from group to group, working incredibly hard and, at times, well into the night, getting our conclusions ready for presentation.  This was the most hard-working conference we had ever attended, and there was no let-up!  Everyone was there for the best interests of those with the syndrome.  The environment of the Akadamie Mont-Ceris was perfect - it was like a small, self-contained village set inside a glasshouse.  It was extremely eco-friendly and its enclosed feeling made us unite as a family.
From these two conferences came the first draft of what we nicknamed "The Book", a compilation of the outcomes of all our work over the two years.  With the help of our consultants, Jan Forster, Hubert and Norbert, this compilation was put into CD format and is now ready for distribution.  This is still a work in progress and as such, is to be used as a guideline for best practices, according to each country's specfic needs and cultures.  We all realise that not every country in the world can achieve the dream goal of having the very best residential care for those with PWS, but these guidelines are the best starting-point to make dreams become reality.

 The full set can be purchased for E30 (includes postage).  Please contact IPWSO secretary in the first instance: linda.thornton@xtra.co.nz to order.  Or go to our website: www.ipwso.org

South Africa

I have recently returned from South Africa where I was invited to come and talk to parents and professionals about PWS.  I spent nearly a month there holding full day, and half-day workshops, and giving lectures at the university hospitals.  I started off in Cape Town where I met a great group of parents who were enthusiastic enough to want to start a branch of the PWS Association for the Western Cape.  I also spoke to a large group of medical personnel, and I also had time to spend looking around the beautiful coast of Cape Town.  Rika and Anli were wonderful tour guides, taking us down to the South Cape, and up Table Mountain, around the bays, and through some of the most beautiful scenery imaginable.  We (my husband came with me) were also hosted by Jannie and Tilla who took us to Stellenbosch and to Langenbaan reserve where we had our first taste of wildlife ("you have no four-footed native animals in New Zealand??"  they asked, amazed). 

Table Mountain

From Cape Town to Bloemfontein for two academic seminars, two workshops for parents and teachers,  and a chance to meet with many caregivers.  I quickly learned that there was quite a difference in delivering specialised services to those with disabilities, which is, of course, unique to each country.  But here it is special with some very dedicated and willing people wanting to do their best for those with PWS in spite of many difficulties.  We were hosted so well, and taken to see a wonderful programme designed to breed and help protect the cheetah, "The Cheetah Experience". 

Rika and Janet

From Bloemfontein to Richard's Bay where we were hosted by Janet, Brian and their lovely sons, and shown a little more of the extraordinary wildlife and scenery of Africa.  To Durban for an academic meeting, then to Johannesburg for another academic meeting, Pretoria for two workshops, and at the end of my trip, having spoken to well over 400 people, we went to the Timbavati Reserve in the Kruger National Park for 4 days.  To experience Africa like this is utterly wonderful, and I would return in a heartbeat!  Our most grateful thanks to all our generous hosts during our time in SA.  It was an inspirational time.

I know that IPWSO and South Africa will continue to explore all the possibilities of improving the lives of those with PWS and I look forward to strengthening our relationship.

Linda Thornton

Janalee

In my capacity as Vice-President of IPWSO, I thought I would introduce myself and let you know what I am doing.  This September/October is going to be very busy!  I will be flying out from Florida to join Giorgio at the ESPE Conference in Prague on 21 September where we will set up an IPWSO booth in the same way we have done for previous ESPE conferences.  “ESPE” stands for European Society for Paediatric  Endocrinology and is  designed to improving the care of children with endocrine diseases by promoting knowledge and research.  IPWSO has been involved with these conferences for many years by promoting our work through sharing information, talking with doctors, networking and informing people about our free diagnosis for PWS at BIRD.  All this is done through our booth, and, believe me, we have built up an impressive data base of professionals throughout the world!

Giorgio & Janalee with Iranian doctor
at the ESPE booth

Straight after the ESPE conference I will be delivering presentations for the PWS Association of the Czech Republic over two days.  This will be an exciting time for me and I am looking forward to meeting as many people as possible during these two days.

ESPE booth at Istanbul

I will be taking a short break with Giorgio and his family before flying to Amenia.   In Armenia  I am taking part in the First International South Caucasian Conference on Rare Diseases and Orphan Drugs, and will be giving a presentation on PWS.  This first conference is an important step in gathering together a large group of parents and professionals interested not only in PWS, but also other rare diseases.  “Orphan” drugs are used to treat rare diseases and are developed through specialised research in many countries under that country’s public policy.  (In Europe, orphan drug registration is controlled by the European Medicines Agency through the Committee for Orphan Medicinal Products (COMP).   At this conference, I know I will catch up with many of our Eastern European members and I am looking forward to that very much.

I will return home on October 10^th.

Blogging from IPWSO

We thought we would start a blog for IPWSO, just to let you know what we are doing, who is doing it, where they've been, and what IPWSO is doing for the world.  For anyone stumbling across this blog, IPWSO stands for the International Prader-Willi Syndrome Organisation and you will find more about us on our website: http://www.ipwso.org/

Contributions will come in from all of us who work for IPWSO, and if anyone would like to send us their thoughts on anything to do with PWS, please send them straight to me for publication:  linda.thornton@xtra.co.nz.  I'm the Secretary for IPWSO and this is part of my work.  We hope you will enjoy our blogs.  We have had a busy year so far for 2010 with much preparation going into our 7th International PWS Conference which was held in Taipei, Taiwan.  Our international conferences are always a great experience, particularly as we have a wonderful mix of professionals and experts, along with parents, caregivers, and the people with PWS themselves.  This makes us into one huge global family; we get to know one another very well, and by sharing our knowledge, experience, and enjoying ourselves, we form a great network of support around the world.  So, I'm looking forward to hearing from you and to sharing more of our work, ideas, and thoughts.