How to give a smile
Saturday, 04 August 2012 15:44

Our association has been founded with the purpose to boost the awarness of the XLPDR. But we also would like to help families with children sick affected by other rare diseases.  We would like to help them with daily problems, to fund research projects on XLPDR but also informative and educational projects. But we can't succeed if we're alone, that's why we're here to ask everyone's collaboration, also public bodies, companies and... YOU, even if you're not directly involved with rare diseases.

Our association, as you probably know, still doesn't get any public help. 

So far we paid every expense with our own money, directly from our pockets. And our bank account still didn't receive any donation. No one!.

We would like to help dr.Zinn. He's the only one scientist in the world doing researches on XLPDR. But each genetic test on a DNA sample costs $3000! We would like to grant dr.Zinn the possibility to continue his wonderful work on XLPDR, that's why we ask your contribution.

The best way to help him (and your children, and their children!) is to donate (click here to know how)

The annual association fee is €20. But don't even imagine we could go far with the bare annual fee. We have to make a more important effort. 

On september we will start with a bunch of found-rising initiatives. Dinner, meetings, marathons. 

If you live near us, be ready to be involved!

But if you live far away, USA, Canada, Australia, be ready to make your effort too!

You could organise your own found-rising initiatives! 

Let's talk about it, we will tell you our experiences, and I'm sure that you'll find the best way to involve your friends, your relatives, your company.

Each achievemnt will be a collective success!

We're trying to help our children, and their future children! And children don't spend so many words. They just smile.

So, let's give them a smile. Their smiles will be our reward.

Well, thank you all. I'm sure that you'll give them a smile, and Alex's one will be the first!

Below you'll find a short report on our present economical situation, with a little explaination.

Thank you again.

Patrizia Gentile


A few words about our economical situation.

We got €140 from seven annual association fees. And we're among those seven people!

We spent €1409.81, so we need €1268.81 just to reach the balance....

Our expenses are:

  • association foundation
  • printed matter (leaflets, business cards)
  • trip to Germany (international rare disease conference)
  • trip to Rome (rare disease)
  • web site 



Income €140
Expenses -€ 1.409,81
Balance -€ 1.268,81
date amount explaination
10/03/2012 € 20,00 Quota associativa Granini Enea
10/03/2012 € 20,00 Quota associativa De Marco Rosella
10/03/2012 € 20,00 Quota associativa Gentile Patrizia
10/03/2012 € 20,00 Quota associativa Randazzo Salvatore
 10/05/2012  € 20,00 Quota associativa Katia Marra
 22/05/2012 € 20,00 Quota associativa Isabella Romano
 19/06/2012 € 20,00 Quota associativa Rossana Amabile Burbi
totale entrate € 140,00


 date  amount  expense description
08/03/2012 € 174,35 spese registrazione statuto notaio
19/04/2012 € 100,00 biglietti 5xMille-tipografo
25/05/2012 € 60,00 stampa volantini.poster -Alex
01/06/2012 € 48,20 Restaurant ORPHEUS Erlangen
01/06/2012 € 40,00 benzina ESSO ERLANGEN
01/06/2012 € 165,00 iscrizione convegno Erlangen GEntile Patrizia
01/06/2012 € 142,00 camera albergo Erlangen-Novotel Gentile Patrizia notti 1/6 e 2/6/2012
01/06/2012 € 8,00 vignetta autostrada Austria
01/06/2012 € 50,00 volantini poster Erlangen
02/06/2012 € 13,85 benzina ESSO ERLANGEN
03/06/2012 € 10,36 ERDGAS Munchen Freiham
03/06/2012 € 90,00 extra albergo Novotel Erlangen
01/06/2012 € 165,00 iscrizione convegno Erlangen Randazzo Salvatore
01/06/2012 € 142,00 camera albergo Erlangen-Novotel Randazzo Salvatore notti 1/6 e 2/6/2012
13/06/2012 € 138,00 biglietti aereo Roma-congresso Sanit Patrizia Gentile e Rosella De Marco
13/06/2012 € 56,00 biglietti treno Roma - Fiumicino Patrizia Gentile e Rosella De Marco
04/08/2012 € 6,05 attivazione posta certificata c/o ARUBA
totale spese  €1409,81





Eurordis 225x96