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What have we done!

As we come to the end of this year we start to look to the future and plan our goals for 2019. We have achieved a great deal in 2018 already and we want to thank our very generous donors who have played such an important part in IPWSO’s ability to achieve, and also our country members and every individual who has been involved across the world in IPWSO's mission of supporting families and those with PWS. We are extremely grateful for your ongoing support.

Sadly, throughout the world many people with PWS and their families are still in urgent need of information and support. If you are in a position to help please consider making a donation now. Monthly donations, as well as one-off donations, can be made easily by clicking the button at the foot of this newsletter. Or, if you live in the USA and would like to donate through Friends of IPWSO, you can now do this by clicking here

As the end of 2018 draws nigh, we thought we would let you know of our achievements and hope that you can support us again next year, especially as we are holding our 10th IPWSO conference!

(The cheeky grin below belongs to one of the younger members of the Singaporean PWS Association)

So, what did we do?

In August/September, IPWSO held its 5th Professional Providers & Caregivers Conference in Munich.

This was organised by the Chairs of the PPCB and wonderfully hosted by Hubert Soyer (Regens Wagner) and Norbert Huntebeck-Stuntebeck (Witteskindshof) who have been inspirational in their work with professional care providers throughout the world. While at the conference, many guests were able to visit the amazing residential resources that Regens Wagner have for those with PWS. This provided a clear vision of what can be done and we know that many care providers returned to their own countries inspired with new ideas and concepts.

These kinds of conferences are a corner-stone of IPWSO’s work and vital to the sharing of knowledge and new and improved methodology in the care of those with PWS. With the generous help from our donors this year, IPWSO was able to offer two scholarships to this conference: one to a doctor in Vietnam where help and knowledge about PWS is incredibly sparse, and the other to a psychologist from Argentina. We have received excellent feedback and reports from both these new Fellows who expressed their gratitude in being able to attend.

Support for national educational conferences

James O’Brien, our IPWSO Board member from Australia, received a Churchill Scholarship on his own merit to study long-distance education benefits particularly in countries as large as Australia, but he also put this to practical use in looking at ways this could benefit PWS families and organisations around the world. James also attended and spoke on IPWSO’s behalf at the Global Genes summit in the US, and Verena Gutman, our board member from Austria, attended a Eurodis meeting in Europe.



Verena Gutman, our board member from Austria, attended a Eurodis meeting in Europe and our President, Tony Holland, was also busy this year with speaking engagements in Athens at IASSIDD (a conference which is dedicated to the scientific study of intellectual disability) where he also set up an information desk for PWS, and was guest speaker at a meeting in Rio de Janeiro hosted by the Brazilian PWSA that brought together families of children with PWS and professionals who work with them.



Services for people with PWS in the big cities, such as Rio and San Paulo are developing, but there is a real challenge in meeting the needs of those who live in more remote areas across this very large country. It was good to see such good partnerships with families and the involvement of different disciplines, such as genetics, endocrinology and psychiatry. IPWSO will continue to be involved in supporting the Brazilian PWS Association and also those Associations in the many other countries in South America. Tony also attended the FPWR conference in the USA and in December, along with Georgina Loughnan (our board member from Australia) will be travelling to China following a request received from a large PWS Clinic.



Amalia Balart, our board member from Chile, attended conferences in several South American countries this year and helped to bring together professionals for the second meeting of the Latinoamerican Network of Doctors with expertise in PWS. This was held at the Fundación Spine, Buenos Aires, Argentina. She also attended the second gathering of families from the South Zone of Chile which took place in October at the University of Santo Tomás, Puerto Montt, Chile.

As with James, Amalia and Tony, many of the costs involved with travelling and speaking at these conferences have been borne by the speakers themselves. This generosity within our Organisation speaks volumes of how much respect our Board members have for the work IPWSO does. We are proud of this culture within IPWSO. This was also evident at the 4th Asia Pacific PWS Conference held in Brisbane in October 2018 where James and Georgina Loughnan spoke and the guest opening speaker was Professor Dan Driscoll, Chair of our Medical & Scientific Advisory Board. For this Asia Pacific conference, IPWSO was able to give a scholarship to a genetic counsellor from Hyderabad, India to attend her first PWS conference.

Free Diagnosis

Many of you will know that offering free diagnosis to patients who live in countries where this is unavailable is a cornerstone of IPWSO’s work. So far in 2018 IPWSO has paid for the testing of 28 samples from Bulgaria, Nicaragua, Peru, Venezuela, Hungary, Georgia, India, Lithuania, Pakistan, Armenia, Iraq and Italy. Although it is never good news to learn of your child’s disability, this early diagnosis provides families with knowledge and support that they would not otherwise have ever gained.



Scientific Research Papers

The year's collection of research papers can be seen on our website


Looking forward to 2019




Of course, this is one of our ‘big’ years when we hold our triennial international PWS conference. This time, the conference will be held in Cuba. We will be offering our usual three programme conference (Scientific, Parent, and Caregiver). It will be an expensive year for us, but also a productive one with the coming together of these three programmes to extend our knowledge, reinforce our passion, and ignite awareness of PWS around the world. The conference dates are 13-17 November and you can follow the progress of speakers, venues, and conference costs at our dedicated conference website. We do hope that you will be willing to support IPWSO once again so that we can continue our quest to make the world a better place.


New Board Members

Board members to IPWSO have a 3 year term with a further 3 year option. This means every three years there is a change-over of board members and in 2019 at our General Assembly we will be filling the places of 5 board members. If you would like to join our team, or know of someone whose skills would fit our work, please, go to our website and read further




Annual Report

IPWSO’s financial year ends on 31 December and within the following few months our Annual Report and audited accounts will be available on our website.


Thank you again for your support to IPWSO

Please consider making a gift now to enable us to continue our work during 2019.

Just click on the image below, it will take you to our donations page! Thank you!





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Salisbury House
Station Road
Cambridge CB1 2LA
UK

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Registered as a charity in England & Wales, charity no. 1182873