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Feed 210 children from Gaza that cannot eat protein

Creator: ASFEMA

Feed 210 children from Gaza that cannot eat protein

Feed 210 children from Gaza that cannot eat protein


It is now the second year that ASFEMA, a little NGO based in Madrid that gathers patients suffering from metabolic hereditary diseases wants to solidarize with those, who live in extreme conditions.. ITis now the second year that we decided to help Gaza Strip. where the little, and not so little patients who suffer from the same contidion struggle to survive. Survive: in a very literal sense. Check full project at 210ninosdegaza.org

 Children that do not eat anything

You probably haven´t heard anything about phenylketonuria. It´s normal, as it is a rare disease, which means that it affects less than 1 in 2000 newborns. In Spain, where we start our campaign, the number is 700 patients. Phenylketonuria or PKU is a disease which stops the organism from breaking down protein properly. In consecuence, one of the aminacids, phenylalanine, damages patient´s brain. The only known form of preventing the damage is... ¡to eliminate almost all protein from the daily diet! People suffering from this condition cannot eat meat, fish, milk and derivatives, eggs, legumes nor flour. So the question is: what DO they eat? And it´s quite a pertinent one. 
PKUers eat fruit and vegetables, oils and sugar. ¿So what comes next? In Europe we are lucky enough to have access to special, low protein products, flours, cakes, cookies, milk and pastas. They are pricey, but they are available. We also supplement protein - we all need protein! - a special medical formula that is made in a lab and is free from the amino acid that damages our brain. 

The diet for life and the formula are the only treatment that has been proven to work and to avoid mental and physical impairment in all cases of phenylketonuria.

The difference between treaten anduntreaten patients is huge. Just see this very illustrative and shocking video: 





AS you might imagine, outside Europe the diagnosis and access to treatment are a bit more complicated. We don´t want patients from Gaza to become impaired!

210 (and more!) children from Gaza 

un niño fenilcetonúrico con la fórmula que donamos una niña fenilcetonúrica de Gaza recibiendo la fórmulaAhmed, un niño fenilcetonúrico

Last year our association started a campaign for Brilliant Future Association, a similar entity based in Gaza Strip. It gathered 210 patients with PKU - now the number has grown. As we were told, due to crisis lived in Gaza in summer 2014, patients with PKU could not obtain their formula, which had been provided by the state till that moment. The formula is the only source that provides a PKU patient with protein she needs, so those who do not consume it suffer slow and almost irreversible neurodegeneration. We decided to act, and we launched a campaign. You can check it on the webpage of our proyect. We raised more than 4500€, mainly from crowdfunding platform. We also organized several concerts and benefical parties. With this money we were able to buy about 110 cans of formula. We were purchasing it at the local distributor in Ramallah, as several big NGOs were unable to warrant us safe conduct of medication to Gaza.
Are you surprised that we only bought this quantity? Well, actually monthly cost of treatment (formula only!) varies from 100 till 150 € per child per month. AS you can imagine, no family in Gaza could afford this product, let alone speaking about low protein ingredents to make bread etc. Rare diseases ofthen require very expensive treatment
But perhaps the best effect of our action was making the problem visible. PKU children from Gaza received international help from far more wealthy and bigger association and it seems that formula supplies will last til September. THat´s a huge success! 
Our work was possible thanks to Federación Española de Enfermedades Metabólicas Hereditarias, ESPKU, PCRF, Palestinian Embassy in Spain, Asociación Médica Hispano Palestina and others. On the international level, Brilliant Future Association received help from Caritas, PALMED, Kuwait and Oman. 

LET´S FEED THEM! 

It seems that the basis of treatment, that is, the formula, is warranted, at least partly. Nevertheless the problem of malnutrition persists. That is why, and always with BFA´s consent we decided to focus on the second problem that treatment entails, namely, low protein food. WIth the money raised on the plaform we want to buy low protein flour, a product which prize is abour 5€ per package. We have localized local distributor already. Low protein flour will be distributed freely among members of association. If the association manages to run little bakery (which is its dream), we will be delighted to deliver low protein basis for that!
Low protein flour is the main source of carbohydrates free from protein. Taking into account the situation lived in Gaza nowadays, PKU patients live literally on the basis of vegetables (without legumes) and fruits and they are at risk for suffering from a cronic hunger. 

un niño diagnosticado tarde con su hermano diagnosticado a tiempo

Join our campaign and consider donating! Each euro counts! If you live outside eurozone, but you want collaborate in some other way, drop us a message! 

 

Apart from crowdfunding campaign we will organize some other benefic events and we will inform you about that, so STAY TUNED!  

Organization and Partnership:  

Asfema -
Local association based in Madrid, whose members are mostly parents and patients suffering from metabolic disorders. Our aim is to improve quality of life of our members, but since 2015 we also struggle to raise awareness about situation of PKUers all over the world. all the info on our page.

Brilliant 
 Future Association: Palestinian local association. We already shared their page, but please consider liking their profile on facebook, so that they can feel your support. You will also be able to check all the activities they are involved in. 

This year we can proudly announce that we collaborate with Innovation Project from University of Granada, who provides us with some basic materials. We also benefited a lot from useful logistic advices recived from FEDER
 
 
 

Learn more about the project
Help this project now

Thank you! The contribution period is over.

1.200 € achieved

1.200€ achieved

100% of 1.200€

There is an extremely vulnerable collective in Gaza, nammely, patients suffering from rare metabolic diseases. In context of humanitarian crisis it is very difficult to avoid their malnutrition. Help us one year more to buy special low protein food they need in order to avoid mental and physical impairment

In the category: Palestine

Contributing 10€

---- Given the purpose and the format of this project it is extremely difficult for us to offer any prize for your donation,but we want to thank you for your solidarity---- "thank you" email from Brilliant Future Association, photobook

UNLIMITED UNITS

Contributing 20€

---- Given the purpose and the format of this project it is extremely difficult for us to offer any prize for your donation,but we want to thank you for your solidarity---- "thank you" email from Brilliant Future Association, photobook

UNLIMITED UNITS

Contributing 25€

---- Given the purpose and the format of this project it is extremely difficult for us to offer any prize for your donation,but we want to thank you for your solidarity---- "thank you" email from Brilliant Future Association, photobook.

UNLIMITED UNITS

Contributing 30€

---- Given the purpose and the format of this project it is extremely difficult for us to offer any prize for your donation,but we want to thank you for your solidarity---- "thank you" email from Brilliant Future ASsociation, photobook

UNLIMITED UNITS

Contributing 50€

---- Given the purpose and the format of this project it is extremely difficult for us to offer any prize for your donation,but we want to thank you for your solidarity---- "thank you" email from Brilliant Future ASsociation, photobook

UNLIMITED UNITS

Contributing 100€

YAY! ---- Given the purpose and the format of this project it is extremely difficult for us to offer any prize for your donation,but we want to thank you for your solidarity---- "thank you" email from Brilliant Future ASsociation, photobook

UNLIMITED UNITS

Contributing 820€

Wow! We are deeply thankful for our solidarity! We will send you a mail from Palestine and a photobook, but we will also spread the word about Your donation among rare diseases associations.

UNLIMITED UNITS

Whose is the idea?

alt imagen

ASFEMA

ASFEMA is a little NGO based in Madrid which struggles to improve life condition of metabolic patients. We also promote global solidarity with people suffering from those diseases.

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