In Hindsight...

IPWSO's work around the world continued to expand throughout 2011, with hundreds of emails, requests for information and for help, particularly from countries where no help is available.  This meant that IPWSO's offer of free diagnoses was taken up by countries such as Algeria, Cyprus, Hungary, India, Iran, Morocco, Nicaragua, Pakistan, and Paraguay.  It is one of the best services IPWSO can offer - and we follow this through with information and support.  We also try to encourage new countries to become associate members and appoint a professional and parent adviser.   Thus, in  2011, our membership reached 97 countries.

With this expansion, we appointed two new board members: Anil Choubey from India and Jose Garcia from Chile.  Having such a widespread board means we can reach further into countries where help is needed - plus, it gives the board about 8 different languages!

Every cloud has a silver lining - so they say... well, IPWSO's biggest cloud was the decrease in financial support from major sponsor,  Pfizer.  We knew it was going to happen "one day", but finding global funders is extremely difficult - more so in this economic climate.  It was suggested that we do our own fundraising, "Light a Candle for IPWSO" and, to our great delight and endless gratitude, we have received fantastic support - you can see for yourselves just who has been 'lighting our candles' for us - this was our silver lining!



Suzanne Cassidy, President IPWSO



In May, 2011, the board held an extra-ordinary general meeting, mostly to set our budget and priorities for this year, and to look at how we can continue to support our member countries.  Pfizer still supports IPWSO at global ESPE conferences where we have an information booth  -  this is where we pick up our new member countries, spread the PWS word and make new and valuable contacts, and this will continue, but IPWSO will no longer be able to cover the costs for board members or officers or other experts to travel as much as before, until our financial situation improves. 

Giorgio & Janalee at an ESPE booth

This year IPWSO was present at two ESPE meetings, one in Scotland and the other in Czechslovakia.  These booths are very well attended - for two reasons, one, because information on PWS is very much sought after, and two, because Giorgio is so well-known that he is greeted as an old friend.  Everyone stops by to say 'hello', to catch up with new information, and to offer their support.  With Janalee's medical expertise and knowledge, IPWSO is unique and can continue to make its presence felt, thanks to Pfizer's continued support for this project.

As 2012 starts to get a grip on things, we can welcome in the Year of the Dragon which is supposed to be one of the most financially propitious years ever, full of drive, vigour and energy!  We're looking forward to that already! 

...so, she joined WSPA



Thanks to http://www.northrup.org/photos/moon-bear/



As we pulled up to the supermarket carpark (and parked as far away as possible... for extra exercise), the WSPA (World Society for Protection of Animals) posters were plain to see.  There was a sorry-looking bear with a ring through his nose, and a very sad little donkey with liquid eyes just imploring you to do something.  A stronger magnet for someone with PWS you could not hope to choose.  Immediately my daughter went straight for the posters and engaged a rather patient young man in conversation:

"What's wrong with those bears?  Who did that to that donkey?  How can people be allowed to do that?  What do you want me to do to help?"

The conversation became seriously involved with how Moon Bears (named for the moon-like crescent on their chests) are captured, their claws and teeth ripped out, and used for bear-baiting.  They are also killed for their gall-bladders. Although it has been illegal since 1989, it still goes on.   WSPA rescues the bears by intercepting bear-baiting fights, and also by offering better incentives for money earning (raising crops, selling produce etc), and then puts the poor clawless, toothless animals into a special reserve where sometimes a claw or two might grow back, but the teeth don't, so they live on soft foods and fruit.  Francie absorbed all of this, at the same time telling me she was going to join up and she would make sure her budget included the $3.60 (NZD) a week necessary.  This link is a video of what happens - warning, it's very graphic, but it does show the refuge with happy bears at the end.

http://video.google.com/videoplay?docid=7013650950411952306#

Of course, my mind was racing back and forth between the interest she would get through joining WSPA and the fact that her miniscule budget barely allows her to feed her cat and buy some personal items like shampoo, not to mention tobacco (that's just another story).  The nice young man, eager to make a convert, said she could get out of it at any stage, or postpone payments if needed.  Of course, Francie was metaphorically captivated and eager to plant her signature on the contract. 

It always interests me how our kids with PWS see the world - they instinctively know who is worse of than themselves, they have a clear idea of their own values, they have a desire to help, to nurture (and to feed) those who can't help themselves.  This was such an occasion.  It will give her an interest, and a kind of ownership, an authority, if you like, over something that she can do for something for someone else.

On the way home in the car she said (absolutely true to form):  "Well, at least my $15 will go towards some fruit for the bears!"