Sunday, September 9, 2012

In August, what happened was....

All around the world there are families needing our support.  Emails come in continuously - not always with cries for help, but quite often, so I'm going to outline some of the issues we helped with internationally in August.   For instance...

Qatar: A mother with an 11 year old son from Doha contacted us asking for support in maintaining her son’s dietary needs and physical activities.  While her son had been diagnosed at birth, he was unable to have GHT due to a sleep apnoea problem. This mother was asking for information about any centres run specifically for PWS where her son could get some help.  Our office in Italy sent all the relevant packets of information, both in Arabic and in English, including DVDs.  Of course, even though we are a big family of many countries (98 to date), there is not always immediate help at hand, so it was with some hope that we contacted Germany and asked our professionals there at the Witteskindhof centre  whether they might be able to help.

You may remember reading our blog  which told of a young woman with PWS from Macedonia who came to stay for a few weeks at Witteskindhof centre with her family.  While she was able to integrate socially and make new friends, at the same time both she and her family learned more about PWS and what kind of support is needed around this syndrome.

Not long after our Qatar request, we were rewarded with an answer outlining the conditions for acceptance.  We have passed this onto our contact in Doha and are hopeful that an excellent outcome will be reached.

Philippines: Not long after this, our CE, Giorgio Fornasier, had a visit from our parent delegate in the Philippines who has been a very active member in our large group.  Currently she is working for a Dutch company and travelling to the Netherlands every few months.  She was immediately put in contact with Dr Leopold Curfs there, and so another strong strand of information, support and help has been forged.

China: An enquiry from China – and, wonderfully, we have Chinese translated information that was able to be posted out immediately, and our parent contact in China alerted to this new family.

Mexico:  In Mexico, a very successful weekend workshop on PWS was held with topics covering paediatrics, growth hormone, behaviour and so on.  Our Scientific Consultant, Dr Moris Angulo from the USA, was one of their major speakers.  Mexico is making very good progress, especially with such expert help!

Peru:  It was sad to receive an email from Peru from a mother who had lost her 3 year old daughter who had PWS, and who was scared to become pregnant again, not knowing the risks involved of carrying a second child with PWS.  We have good Spanish-speaking medical contacts who were able to talk to this mother in her own language.

Chile: We welcomed a new Parent Delegate from Chile, Amarlia Barlart, who speaks excellent English as well, and who is eager to help families in her country.

New Zealand: We welcomed a new Caregiver Delegate from New Zealand, Julie-Anne Quinney and look forward to meeting her at the 8th International PWS Conference next year.

Our Professional Providers Board:  Talking about our professional caregivers, they have e-office hours where you can contact them and talk through any issues or problems, or just talk about PWS with another country – it’s a great resource and we hope to build up quite a talk-fest.  You can find information on our website under the “Carers” tab.  During their last month's office hours, they spoke with caregivers from USA and Spain.  You don't even have to have a problem to talk!  They just love to know you're 'out there'!

Fundraising:  Finally – we are still struggling to revive our grant from Pfizer which allows us to do our daily work.  We know it is difficult to find funding for everyone all around the world, but we hope we will never be in a position to close our doors!  You can help, of course – our “Light a Candle” project is still alive and well, and we received a donation just the other day; our “e-gallery” project where you can buy wonderful and unusual art-work for a small donation, is still waiting for you!

Membership dues: And, if we receive all our membership dues, this will also help us in our work.  Outstanding dues still remain from:


Don’t forget, you need to be a fully subscribed member country in order to have a vote at the General Assembly next year where we look forward to another wonderful conference, full of more wonderful people!  (Well, we are, aren't we?)

1 comment:

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