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ASFEMA

  • By RAQUEL MIGUEL · Spain, Europe

 

ASFEMA

Main aim of the charity

The main goal is to relieve persons suffering from inherited metabolic disease, considered rare diseases, as well as their families. Those persons require a special pharmacological treatment and a zero-protein diet. Some vegetables and fruits can be taken. Because of this, the persons affected have to consume special substitutes for such basic foods as meat, fish, dairy, bread, cookies, etc. These very basic products become 600% more expensive for their families. My rol as treasurer is to make those basic foods more accessible to families. In addition, we help families to face the diagnosis with psychological support. When a child is born with a rare disease, the parents do not know where to go; very few patients with same condition and they face overcoming the diagnosis in solitude

How the employee got involved and why

One of my sons is afected with a metabolic disease, not being able to eat any protein. I volunteer at the NGO ASFEMA which goal is to relieve persons suffering from inherited metabolic disease, considered rare diseases, as well as their families. Those persons require a special pharmacological treatment and a zero-protein diet. Some vegetables and fruits can be taken. Because of this, the persons affected have to consume special substitutes for such basic foods as meat, fish, dairy, bread, cookies, etc. These very basic products become 600% more expensive for their families.

What work does the employee do for charity?

I´m the treasurer for the NGO ASFEMA in Madrid and an affected mother. My job is to make the weekly purchase of special foods to national and international suppliers for 100 families, seeking the greatest savings in these purchases. In addition, we help families to face the diagnosis with psychological support. When a child is born with a rare disease, the parents do not know where to go; very few patients with same condition and they face overcoming the diagnosis in solitude. We help to around 100 families, organizing parties for 100, meals for 100, outdoor activities and camps, so that patients can feel more united.

What impact would winning have on the charity?

Winning it would mean a great economic help to our association cause we dont have any public finance support from government. so we have to organize raffles and markets to raise funds.

What impact would winning have on the employee?

It would a very important push for me cause i dedicate around 720 hrs per year, i live with this situation at home and outside so all my efforts are focused on this. Every hour that I dedicate to these 100 families ... is also a hundred worth!

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