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

Diagnosis: Prader-Willi Syndrome

"Diagnosis: Prader-Willi Syndrome"  How many of us have heard those four words and felt the world come crashing down?  It doesn't matter how well-prepared we might be, it still comes as a shock. It's something we don't want to hear; we want our baby to be perfect, of that there is no doubt, and dealing with the hard reality that there is something fundamentally wrong, is quite possibly one of the most difficult things to accept.  I remember it well.

But, imagine what it is like for parents living in a country that is unable to find a diagnosis for their child?  They know there is something wrong, they've been advised by doctors that there is nothing they can do, and they leave the hospital feeling hopelessly lost, vulnerable, scared and alone.  They need our support and the first thing that we can do for them is make sure they have the right diagnosis - as hard as this is going to be, once they are equipped with the knowledge of how to care and manage their child's life, having a diagnosis is the best foundation to start preparing.

IPWSO has always been able to fund the cost of this diagnosis.

 This is how it's done.   IPWSO's head office is in amongst the offices of BIRD which is the Baschirotto Institute for Rare Diseases, in Vicenza, Italy (you can read more about this here.)  The laboratory there does the diagnostic tests for just the cost of the supplies - E150 (about USD150).  Parents of children in countries where diagnosis is difficult to obtain, just need to put a drop of their child's blood onto a piece of blotting paper and send it by mail to BIRD  (instructions are on our website).  It's as simple as that.

After the test is done, we contact the parents and the medics with advice, information and support.  We know how difficult it is for parents hearing the news for the first time, but without a diagnosis, life could be even more difficult and precarious.

Since 2003, IPWSO has been able to fund over 420 tests.  It is one of the principle factors to our work in the world and one that we wish to continue.  We have been through some difficult economic times and we know we are not the only agency feeling the pressure, but we believe what we do in the world makes a difference, so we need to continue to raise our own funds.

Maybe you can help?  Donating €150 (or $190 USD) covers a diagnostic test and possibly saves a life.  Donating $1,000 USD will cover diagnostic costs for six children and help provide training for testing in that country.  Donations can be made by an individual or a group, and can be in honour or memory of a loved one who will be recognized for a year on our web page.

We would be so grateful for your contribution - and so will the family you help.  For details, check here  We hope, that with your help, we can continue to help others understand the uniqueness of PWS that we all face.

Thank you for understanding...and if you can Donate a Diagnosis, there will be one family in this world, better off for your generosity!

February at IPWSO

February has been busy, as usual.  We have had several requests for help and been able to send information and network with other professionals in a bid to help our families across the world.

A 26 yr old woman with PWS living in Kuwait who has had little or no support throughout her life.  At this time we don’t have educational material in Arabic, so we contacted one of our consultants in the States who is now following this case and supporting the medical professionals.  We had a similar case in Sudan which has brought up the same problems of having no educational material in Arabic available yet.

We sent information to a doctor in New Delhi about bariatric surgery in PWS, and supported another enquiry from India with a free diagnosis at BIRD for a 20 year old patient with a clinical diagnosis of PWS.  Our professional delegates in Lithuania and also Guatemala requested instructions on sending blood samples to our lab in Italy for a suspect case of PWS. 

In Malaysia, we were delighted to learn of the first gathering of PWS families in Kuala Lumpur on 19^th February.  This coincided with a new contact from Malaysia needing help and we were able to put them in contact with our professional delegate, and the new family gathering.  They were delighted and relieved as the only information they’d been able to receive was in Singapore, which meant the financial cost to the family was quite high.  

We had a request for information for medical references from an English family living in Dubai, butthis is another area where we are in the early stages of trying to build professional networks.  We sent her our packages of information.  Other educational and support information was sent to Porto Rico where they are keen to establish a parent support group in her country, and educational information was sent to the PWS Association in Colombia.

Our parent delegate in Spain put us the following question: ”We have problems here in Spain because some doctors do not allow GH therapy on several children with PWS that are only 11-14 years old. What is happening in the rest of Europe or the world? Do you know?”  His request was sent out to most of our member who immediately replied to him.

On Leap Day, February 29th, BIRD organised a wonderful event in a beautiful theatre in Vicenza (Italy) to celebrate the International Rare Diseases Day.  Over 1,000 students and their teachers from local high schools participated.  Giorgio gave a short talk about his experience as a parent, then sang "Ich Auch" (listen here) at the end, with great success!
 

Finally, we are indebted to our wonderful supporters who have lit candles to help IPWSO continue its work across the world – we thank you so much for your graciousness and generosity.  You can check on the candles by going to our Light A Candle for IPWSO page.

 

One of IPWSO's three information packages:  General Awareness, Medical Awareness, and Crisis Intervention

Invoices for membership fees 2012 have been sent out, and the following member countries are now subscribed for this year:

• Australia
• Finland
• France
• Germany
• New Zealand
• Norway
• Slovakia
• USA