Sunday, April 13, 2014

So... how many Easter Eggs will you eat?

IPWSO Awareness Week is all about chocolate - that's right, it's about how many Easter eggs will be eaten around the world this Easter.  Google tells me that over 80 million Easter eggs were eaten last year in the UK alone!  In the States the figures rise to over 700 million

When, at our monthly Skype meetings, the discussion started around fundraising this year, I swear you could hear stifled sighs from all around the world!  No one really likes fundraising or asking for money, or pushing your financial needs in front of other just causes, but these days it's what we all have to do.  Someone said, "let's do this at Easter!  Every family with a child with PWS dreads Easter and all the extra temptation!  Let's make sure everyone knows how hard it is!"

The idea caught on, and so we are concentrating on this week before Easter in order to raise awareness of IPWSO and the work we do. We rely heavily on the goodness and generosity of people like you to help us continue doing what we can to help families around the world.  For example, every month there are many email enquiries for help.  Some of this is straight-forward and we can put people in touch with others in their country, but some of it is more involved and requires searching for answers.

Prof Tony Holland
We have a fantastic Scientific Advisory Board (chaired by Professor AJ (Tony) Holland), and all these people give freely of their time which means if you have a question, we can put you in touch with specialists in all fields of PW.
Some of our PPCB Board

We have a residential advisory board, Professional Providers Caregivers Board (PPCB) who are there to give advice on residential accommodation for adults with PWS.  All of these people also give freely of their time.

We have FamCare, a board of parents and specialists who look at what families looking after an adult child with PWS need; this is more like a parent-to-parent group where the experts are the parents.

Our wonderful BIRD laboratory staff with their founders
IPWSO covers the costs of providing free diagnoses to families in countries where this would otherwise be impossible.  Last year, we did 47 free diagnoses.  Each diagnosis costs IPWSO USD190.  But, there are 47 more families who can now start to understand PWS and learn how to raise their child in the best way possible.

IPWSO helps and supports countries wanting to have their first conference, or even just a meeting of families and professionals.  In 2013 we supported meetings in Cuba and Honduras; places where parents had never met another child with PWS.

One of our many IPWSO booths
IPWSO attends international ESPE conferences were hundreds of paediatricans from around the world gather and hundreds pass by our IPWSO 'booth' and pick up information to take back to their countries with them. 

IPWSO supports 103 countries from Algeria to Yemen.  We know that there are many Western countries who don't need our direct help, but you are the only ones who can help us to help others.

So, in the tradition of Easter giving, would you, your friends, your associates, your Association, your family, help us to help others by donating the cost of a few Easter eggs?  Little Louis from Ireland has saved his pocket-money - you can see him in this video - and you can donate by clicking here.   Your donations will go towards providing free diagnoses, support for new associations, information-sharing and publications.

We are grateful to you for your generosity and support.

The IPWSO Chair and Board members


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