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I also pushed the truck against RETT SYNDROME
A new year, and always ask for things that often can not fulfill, but in my mind takes some time moving a project, an ambitious, you can help change things, to Rett syndrome, a little more weak, and we can go slowly gaining ground.
A few months ago I reported that there is a project of research on this syndrome in the Hospital San Joan de Deu (Barcelona) and powered by the FOUNDATION of the same name, and season after season trying to raise the necessary funds for this project not cease for financial reasons.
He holds the Dr. Mercedes Pineda and his crew, who were held that once the genetic analysis of Mary to diagnose.
The idea of participating in the Barcelona marathon with Mary and try to raise funds to finance this project. It would establish a grant for each kilometer of the race and that this fund would directly fund the research project from Rett syndrome.
We have spent some time working on the issue, and I think it's time to make it known to everyone, all you who're following us every day. We have to go all the action of pushing this car really, actively struggle, here not only Mary but travels a lot of girls and parents like us who suffer from this disease, Rett syndrome.
We will establish a token donation for each mile, which is 10 Euros, and while the marathon is 42 miles, try to donate all possible, to not put limits on the campaign, so we thought also make a Kilometer 0, which would go those other donations.
We also seek potential sponsors, in addition to any other ideas that can help us in this project.
For this campaign, I prepared a special video. In its issue we have recovered images when Mary was a normal girl. For us parents, this is very hard, as you relive moments you've tried to forget.
It is important to note that this video does not reflect the day to day with the disease, which attempts to show the most friendly and nice, but I assure you that the reality is quite another ...
The way to make donations, will be in two ways, one directly on the official website of the Foundation San Joan de Deu, clicking on this link donation by filling in the comments section, MARATHON RETT. This will go for that particular game, or also making a transfer to this account number, also of the Foundation: 2100 - 3887 - 05-0200037438 of the Caixa .
Hope for your support and solidarity, so that together and gradually winning the race can go to this fatal disease ...
Josele and Maria ...