https://www.youtube.com/watch?v=Z1FcA-Aag6M

 

 

Ο Ανδρέας - Ράρες γεννήθηκε στις 5 Δεκεμβρίου 2013 και πρόσφατα διαγνώστηκε με ένα πολύ σπάνιο σύνδρομο που λέγετε Allan-Herndon-Dudley. Μας πήρε 8 μήνες για να βρούμε ένα γιατρό ο οποίος να καταφέρει να μας πει τι έχει ο γιος μας και αισθανόμασταν ότι η αναμονή δεν θα τελειώσει ποτέ. Πρόσφατα τελείωσε….

Δεν υπάρχει θεραπεία για αυτό το σύνδρομο και λόγω του γεγονότος ότι είναι τόσο λίγες οι περιπτώσεις παγκοσμίως δεν γίνεται και πολύ εντατική έρευνα.

Μέχρι τώρα κοιτάξαμε κάθε πιθανή λύση από φάρμακα μέχρι και θεραπείες με βλαστοκύτταρα και δεν καταφέραμε να βρούμε κάποια σίγουρη θεραπεία. Συνεχίζουμε να ψάχνουμε και θα συνεχίζουμε για όσο χρειαστεί.

Ο Ανδρέας - Ράρες κάνει δυο τύπους φυσιοθεραπείας αυτή την στιγμή, 4 συνεδρίες την εβδομάδα. Κάνει Bobath και Vojta. Μας πρότειναν να κάνουμε περισσότερες Vojta συνεδρίες όμως μέχρι τώρα δεν ήταν οικονομικά δυνατό. Επιπλέον υπάρχουν θεραπείες για την ενεργοποίηση των αισθήσεων και θεραπείες κολύμβησης που θεωρείται ότι βοηθάνε σε άτομα με το σύνδρομό του όμως λόγο οικονομικών περιορισμών δεν καταφέραμε να τις κάνουμε.

Οι φυσιοθεραπείες που κάνουμε τώρα είναι μόνο για την ανάπτυξη βασικής κινητικότητας. Θα χρειαστούμε θεραπείες ανάπτυξης λεπτής κινητικότητας (μέσω εργασιοθεραπείας) καθώς και θεραπείες ανάπτυξης συμπεριφοράς και κοινωνικότητας.

Η δίαιτα του πρέπει να είναι με υψηλές θερμίδες και πρωτεΐνες και θα πρέπει να λαμβάνουμε υπόψη τόσο τους περιορισμούς του συνδρόμου όσο και την φυσική προσπάθεια που κάνει με τις φυσιοθεραπείες.

Η μη εξειδικευμένη διατροφή είχε ως αποτέλεσμα να κοιμάται 5 ώρες κατά την διάρκεια της ημέρας και να είναι συνεχώς κουρασμένος

Πρόσφατα επικοινωνήσαμε με ειδικούς σε χρωμοσωματικά σύνδρομα διατροφολόγους και περιμένουμε την πρώτη μας συνεδρία η οποία θα γίνει στις 19 Μάιου.

Υπάρχει ένα πειραματικό φάρμακο που θα μπορούσε να βοηθήσει με την κατάσταση του και έχουμε κάνει αίτηση για να συμμετάσχουμε. Αυτή την στιγμή ζούμε στην Ελλάδα και το κοντινότερο μέρος που μπορούμε να πάμε για την θεραπεία είναι στο Βουκουρέστι, Ρουμανία. Για τους πρώτους 3 μήνες θα πρέπει να πηγαίνουμε κάθε 2 εβδομάδες, στην συνέχεια κάθε μήνα και έτσι θα συνεχιστεί. Η δοκιμή θα διαρκέσει για ένα χρόνο και δύο μήνες και συνεπώς τα έξοδα μετακίνησης και διαμονής θα είναι αρκετά μεγάλα.

Υπάρχουν και άλλου τύπου θεραπείες που θα μπορούσαν να είναι επωφελή για την κατάσταση του και θα θέλαμε να μπορέσουμε να του τις παρέχουμε έτσι ώστε να του δώσουμε την ευκαιρία να κάνει ότι καλύτερο μπορεί. Για αυτό το λόγο θα χρειαστούμε την βοήθειά σας καθώς δεν καταφέρνουμε να ανταποκριθούμε σε όλα τα έξοδα που η θεραπείες του απαιτούν.

 

http://www.andreas-rares.eu/arxikh/

 

 

Andreas-Rares was born on the 5th of December 2013 and he was recently diagnosed with a very rare syndrome called Allan-Herndon-Dudley. It took us 8 months to find a doctor able to tell us what is wrong with our baby and we felt like the waiting will never end. Recently it has...

There is no treatment for this syndrome and due to the fact that there are so few cases worldwide there is not much research done about it either.

Until now we looked into every possible solution from drugs to stem cells and found no definite cure. We are still looking and we will continue to do so for as long as it takes.

Andreas-Rares is doing two kinds of physiotherapy at the moment, four sessions a week. He is doing Bobath and Vojta therapies. We were advice to increase the number of Vojta sessions but until now that hasn't been economically possible. 
There are also sensory integration therapy and swimming that helps with his syndrome but due to the restrictive budget we haven't been able to do those.

The physio therapies we are doing now are only for gross motor skills development. He also needs fine motor skills development (and that is done through occupational therapy) as well as behavior development therapy.

His diet needs to be high in calories and proteins but also needs take into consideration the restrictions the syndrome imposes as well as the effort he is doing with physio therapies.

The non specialized diet had as result him sleeping up to 5 hours during daytime and being constantly tired. Now, we contacted a nutritionist specialized in chromosomal syndromes in the US and we are waiting for our first interview which will take place after the 19th of May.

There is an ongoing medical trial for a new drug thought to help with his condition and we have applied for participation. The trial will take place in Bucharest, Romania. For the first three months we will need to be there for tests every 2 weeks, then every month and so on. The trial will last about a year and two months so often trips will need to be made therefore travel expenses will be quite high.

There are other kinds of therapies though to be helpful for his condition and we would like to be able to try them and give him the opportunity to be the best he can. For that though, we need your support since we find ourselves unable to cope with all the expenses that his treatment requires.

Thank you in advance

http://www.andreas-rares.eu/home-en/

 

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Mobile phones, apps and alternative currencies are changing the way we think about the welfare of others. Ambika Kandasamy explores their impact on philanthropy

BACK IN 2009, while studying economic development at Harvard University, Paul Niehaus and a few friends had a question. If they wanted to donate money to people living in extreme poverty in the developing world, what was the most efficient and effective way to do it?

Their research led them to the conclusion that a system for transferring cash directly to people in need held the most promise. Such a fast and personal method needed a corresponding technology. Luckily, the rapid spread of mobile phones in the developing world had created a new type of financial ecosystem that allowed just these kinds of payments to be made securely and efficiently. The only thing missing was an organisation set up to do the job.

So they created GiveDirectly, a non-profit organisation that transfers money to people who live on less than US$1 a day in Kenya and Uganda. These people are chosen using a simple, objective criterion of poverty – whether they live under a thatched roof. The recipients then get a lump sum of around $1000 to use as they wish. “Once we find them, the end-to-end cost of putting money in their hands is less than 3 per cent,” says Niehaus. “We think that’s transformative.”

Now president of the organisation, Niehaus says his group stays in touch with 99 per cent of these recipients by phone. “It’s just as important that the people we’re serving can give us feedback on how we’re doing through mobile,” he adds. Communicating with recipients allows the organisation to find out how well their strategies are working in real time.

MICROPAYMENT MODEL

GiveDirectly is just one example of the way modern and emerging technologies are transforming philanthropy. In Australia and other places, charitable organisations are beginning to harness the mobile phone revolution, the rise of apps, micropayment systems, alternative forms of currency and, of course, the internet to change the way people give and receive.

While this provides clear opportunities for small, nimble organisations to start transforming the world, it also poses a challenge for larger, more established philanthropic organisations, which are having to adapt quickly to compete in a changing landscape of donation approaches.

Mobile phones are probably responsible for the greatest number of recent significant changes to philanthropy. Take, for example, the ability to make donations by sending an SMS message.

“People are so used to texting now,” says Renee Bowker, CEO of the Telco Together Foundation in Victoria, which promotes volunteering and fundraising in Australia. “It takes away all those barriers around trying to get people to get their credit cards out and actually make a conscious payment – they just have to text.” To build on this, Bowker’s organisation is coordinating a pilot SMS donations programme with telecommunications companies in Australia. It’s expected to launch in July.

Then there are the plethora of apps that aim to change the culture of giving by allowing people to donate as easily as checking their email. These includeGoogle’s One Today and the Australian-based app Shout For Good. A range of tools are also streamlining the way people can send money online, such as the PayPal donate button and Google Wallet.

In the past, the affluent class was responsible for the bulk of philanthropic giving. But technology has democratised the process of giving in unprecedented ways. Now people manage financial transactions on their mobile phones – an ability that has had a huge impact in parts of Africa. For example, systems such as M-Pesa in Kenya allow people to deposit, withdraw and transfer money easily using their mobile phones. The result is a banking system that almost anybody can access, without the need to visit a branch.

These banking systems have become hugely popular. M-Pesa is now available in many more countries and, in Kenya, transactions during 2014 reportedly had a value equivalent to almost half the country’s GDP. This system has made it simple to send money directly to people in need – it is one of the methods GiveDirectly uses to transfer money.

Other, even more unconventional ways to donate are starting to appear. Bitcoin is a decentralised digital currency that people can send to each other without an intermediary such as a bank. It is entirely independent of governments and financial institutions and completely transparent – every transaction is recorded and made publicly available.

That has attracted some interest in the non-profit sector. “Where I think bitcoin has the real opportunity to change philanthropy is in its transparency,” says Peter Chasse, founder and president of The Water Project, a non-profit that helps communities in sub-Saharan Africa access clean water. Bitcoin’s detailed transaction records allow people to see exactly how their donations have been used, which can reassure them that the money is definitely going where it’s needed.

Some organisations use other forms of currency entirely. Yerdle is a smartphone-based marketplace where users buy and sell items with “Yerdle dollars” earned by giving away their things. The Freecycle Network does away with currency entirely with a forum where people donate unwanted possessions and obtain things they need – all for free.

But change on this scale has its downsides too. A key challenge for charities is capturing the attention of prospective donors when there are so many distracting alternatives.

PAYING ATTENTION

Last year, Chao Guo at the University of Pennsylvania in Philadelphia and Gregory Saxton at the State University of New York in Buffalo outlined the difficulties and opportunities caused by information overload in the philanthropic world.

They use the phrase “attention philanthropy” to describe the phenomenon and say it provides a clear motivation for non-profit leaders to be more innovative. In other words, they need to come up with compelling and targeted messages that capture the attention of potential donors. There is no shortage of ways to do this thanks to the growing ubiquity of social media mobile and multimedia tools.

At the same time, non-profit organisations that place too much emphasis on attracting attention run the risk of straying from their mission and accountability, says Guo.
The changes already enabled are having a profound impact. GiveDirectly has helped people increase their assets and income, improve their psychological well-being and reduce the number of days their children go without food. Important change by any standards.

 

πηγή

http://www.newscientist.com/science-of-philanthropy/?p=133&utm_source=NSNS&utm_medium=SOC&utm_campaign=hoot&cmpid=SOC%257CNSNS%257C2015-GLOBAL-hoot