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! 

IPWSO at ESPE "Why wait for obesity to diagnose PWS?"

Dear IPWSO members,

I just wanted to give you an update on our IPWSO awareness booth at the ESPE conference.  Although it is the “European Society for Pediatric Endocrinology”  there are 2,500-3,000 participants from all over the world – and I mean all over the world.  Giorgio and I are both invigorated and exhausted!  We were just crazy busy today with people stopping by our booth for information on PWS.  There were times when even with the two of us, we could not talk to everyone or get them all scanned because there were too many at a time, but they all got one of the packets Giorgio put together.

IPWSO Booth at ESPE Conference, Glasgow

We have extensive packets for those who have no information, packets for those that received information from us before, but were looking for new information, and crisis packets for those dealing with weight and behavior issues.  I also brought a suitcase full (75) of our brand new growth hormone books that we created and printed at PWSA (USA).  Between Giorgio’s 9 cartons and my suitcase full, we only have 3 cartons left and have 2 ½ days to go!  We are looking at ways to stretch the information. 

Giorgio has been able to recruit physicians from three countries where we are not represented to be the IPWSO professional delegate.  We have also made contact with the key people at the two pharmaceutical companies that have the indication on GHT and PWS.  Having the new GHT booklet helped to peak their interest.  One physician from the country of Georgia even personally brought Giorgio blood samples to the conference in order to get the free diagnosis services we provide in collaboration with BIRD.  Another physician from Vietnam stopped to personally thank IPWSO for the free diagnosis services.  They are now getting children with PWS diagnosed in their country.

Giorgio and I make a good team for these conferences.  I handle the medical questions, but Giorgio is really the impressive one to watch in action.  He can greet people in almost any language and have conversations in 6-7 languages.  He also knows the delegates in all of the countries, so can discuss that with them.  He also works very hard to get all of the materials together (I send him the new articles we need to add) and knows the details on how to ship internationally – and of course, is renowned for being frugal!  He knows the conference organizers and they treat us well.  We have a great corner location for our booth.  As always, we are not in the fancy hotels with the doctors, but in a cheap one and Giorgio drove 4 hours to fly out of an airport where the flight was much cheaper. 

Iranian Delegate with Giorgio Fornasier

I am sharing this information so you can appreciate the significance of this important education service we offer, and the collaborative efforts between IPWSO, BIRD, and PWSA (USA).  

Warm regards,

Janalee Heinemann, MSW

Vice President, IPWSO

Director of Research & Medical Affairs

PWSA (USA)