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Final preparations…!

Life has been a bit frantic with the final preparations for our 10th International conference which is being held in partnership with the Cuban Human Genetics Society in the Cojimar Conference Centre just outside of Havana from the 13th to 17th November 2019.

For the different parts of the conference we have delegates registered from over 35 countries and registrations are still coming in (there is still time to register, do it today!). This will be a unique opportunity for clinicians, scientists, parents, caregivers, and people with PWS from around the world to meet and share ideas. There is no other conference that brings together people in such a powerful way and we know it is going to be extra special in Cuba.

You will see from the programmes that we have reviews and workshops and almost every topic relevant to the needs of people with PWS will be discussed at one or other of the individual conferences. This conference, held every three years, is also an opportunity to renew friendships and to recharge your batteries so that you can return to your own country with new ideas.

At the General Assembly held at 5.00pm on the final day (Sunday 17th November), a new Board of Trustees for IPWSO will be elected by our member organisations. The names of those proposed are on our website. This meeting is also an opportunity for present and future Board members to hear from you about what you would like us to do – how can IPWSO work to improve the lives of people with PWS across the world and create and maintain this ‘international PWS family’. We have ideas but we want your ideas also.

For those who have not registered it is not too late – Cuba is irresistible!

 

 

Photo by Arno Smit on Unsplash

Travelling to Cuba from the US and beyond

There has been much in the news about changing regulations from the American Government about who and under what circumstances USA citizens or citizens from other countries travelling through the USA to go Cuba are allowed to travel. Further information has been added to our website (on our travel page) which I hope will be helpful. We have been monitoring the situation closely. We, of course, cannot be certain what will happen in the months to come. However, the IPWSO Board has made the decision to continue with the plans.

This is an important conference that has already brought benefits to people with PWS and their families in Central and South America as the mere fact of holding the conference in Cuba has raised the profile of PWS in these many countries. As has been the case in the past we will be bringing together clinicians and researchers who are experts in PWS or who are wishing to become experts to be part of the Clinical and Scientific Conference. The Professional Providers’ and Caregivers’ and Parents’ conferences have become a major event bringing together, from across the world, those directly involved in the support and care of children and adults with PWS.

Our experience is that those involved in these different conferences go back home feeling reinvigorated and with new ideas. Cuba is a fascinating country with a complex and difficult history that has led to great resilience and ingenuity. Our hosts the Cuban Genetics Society are waiting to welcome us all. I hope you feel able to come. Registration will open very soon.

 

Tony Holland

President, IPWSO

Cuba visit blog continued…

My last blog written after arriving in Cuba ended rather abruptly with a promise to write more later that evening. Sleep got the better of me and now I am catching up – albeit a little late.

Everyone will be aware of the challenges Cubans have had to face over many years and will know something about their history. What is striking is the determination of the many Cubans we met to engage with the international community and to make an event, such as the IPWSO conference, a great success.

There is building work being undertaken at the Cojimar Centre to improve facilities, there is space for the different parts of our conference and also space nearby for activities for people with PWS, and there are Cuban professionals and families ready to welcome us. This conference is not without its challenges but these are being overcome. We will provide more information in due course but it is important to note that there will be things that are different and not so easy. Credit cards are not uniformly used, the internet is available but can be a bit problematic, and the two Cuban currencies (one for non-Cubans) that exist is an unusual situation!

Once registration opens we advise that you also book your hotel through Havantur. There are several that will be mentioned. Do check out the hotels through Trip Advisor etc – there are good hotels in central Havana and also the Hotel Nacional, which overlooks the sea and the famous Havana esplanade, just a short distance from these other hotels. There are no good hotels within walking distance of the Cojimar Conference Centre (please note the Cojimar Conference Centre is not the main Havana Conference centre) and when you book your hotel through Havantur this will include travel to and from the hotel and to and from the conference.

For Americans, visiting just for tourism is not allowed but attending this conference is allowed and therefore you will have the opportunity to visit this lovely island that sits just 60 miles off the Florida coast and, like the rest of us, the conference will provide this unique opportunity to visit Cuba and to meet people from across the world all united around the need to improve the lives of people with PWS.

Watch the website for more information!

Professor Tony Holland

A visit to Cuba, March 2019

I just arrived in Havana having flown Iberia airlines (part of the Oneworld alliance) from London Heathrow via Madrid. Some delay landing at Madrid as only one runway was in operation but they got all of us travelling onto Havana to the gate with 1 minute to spare!! Flights uneventful. On arrival I was through immigration very quickly – they were polite and welcoming. I had only hand luggage so was then out into the arrivals lounge in no time. Some chaos as so many people were there to welcome relatives home or to greet visitors.

As instructed by our hosts I went to find the Havanatur Office. It is across a pedestrian crossing outside the main airport building where there are a small group of offices – just about 20 metres away from the arrivals hall. The Havantur Office is marked and the staff were expecting me and said ‘Prader-Willi’. They immediately arranged a taxi, which I had paid for in advance, to take me to the hotel. Very pleasant taxi driver.

I arrived at the Hotel Nacional and again it was very efficient and welcoming. I had booked the hotel in advance from the UK through Havantur and paid by credit card through a link they sent. After checking in I arranged connection to the internet to send this blog post. They have given me a small suite – perhaps an advantage being President of IPWSO! The space is great – clean, air conditioning, etc. Tomorrow we meet with our Cuban hosts and I will write more in the evening.

Professor Tony Holland

Why Cuba will be special for parents and families

Verena, a mother of a 29 year old daughter with PWS, explains why attending this conference will be so valuable for families:

Knowledge is so necessary to manage the challenges of life with PWS.

In Cuba you will have the opportunity to get support if you have a baby, a young child or even a grown-up with PWS: experts from all over the world will come together to report and discuss, to give hope and knowledge.

Topics like nutrition, physical activity and therapy, school education, ageing, work and behavior management at home or in a residence will be treated and discussed with you by scientists, professional caregivers and parents with special PWS experience. This is something unique as living with PWS is not so common. It is like “coming home”! Don’t worry – they will speak to you as a mother, father or another family member. They will understand you.  The IPWSO family speaks the same language – maybe the first time since the birth of your daughter or son!!?? But you will get also hope and perspectives that a quality of life with PWS is not only possible but also experienced! I am sure that you will find in Cuba the part of the puzzle which is useful and helpful for your future and the future of your individuals with PWS!!

Verena

Mother of a 29 year old daughter with PWS

IPWSO board member

Board member of PWS AUSTRIA

IPWSO President, Professor Tony Holland introduces our 10th international conference

IPWSO President, Professor Tony Holland introduces our 10th international conference and why you should put it in your diary now! 

A great IPWSO conference in partnership with Cuban colleagues in an exotic place with an extraordinary history – what more could you want?  

This 10th IPWSO conferences, like past IPWSO conferences, will provide a forum for scientific enquiry, for parents and care providers to hear about new thinking and to share and exchange their ideas, and for people with PWS to meet with each other and have fun.  

IPWSO seeks to draw people together from across the world who share the common aim of making life better for people with PWS. For clinicians and scientists this is a rare chance to exchange ideas across academic disciplines and to present new findings and by taking part in the parents’ and care providers’ conferences to discuss their work and to learn from others about the concerns of families and people with PWS.  

Coming together every three years is always special wherever it is in the world but meeting in Cuba brings something more, a place with grand old buildings, a beautiful coast and a music loving people. I encourage you to come and immerse yourself in the conference, see the island, and enjoy some salsa!