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:
Greece
Poland
Venezuela
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?)
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