Do Something Good for One Another
Charity by Charito is a new concept invented to help a Spanish foundation together with some friends by having a lot of fun.
You only need to clean your closet, take your stuff and come to my event.
Read more about Charity by Charito by clicking on concept.
About Charo Van Hulst
Since 2009, Charo has been organising events on the Costa del Sol to support local charities. Charity by Charito started out by supporting Cudeca and held 10 events in their aid, however, her last 4 events were in aid of Debra - The Butterfly Children Charity.
I came to Spain to study Spanish in 2006. I had many many jobs in the tourism industry working as a personal assistant and now I work for ABN AMRO in Puerto Banus as an office manager.
I have many years experince in organising events so in 2009 I decided I would like to focus on charity. My main interesteds us to help people and to use my network for more awareness.
Epidermolysis - Bullosa or Butterfly Skin is an incurable, rare and serious genetic condition that affects the skin. The skin becomes as delicate as a butterfly wing.
Simply touching the surface of the skin causes severe blistering and wounds that never heal. Blistering also occurs internally (in the mouth, oesophagus, intestine, airways, urinary tracts and even the inside of the eyelids) leading to further suffering and serious health problems.
EB causes a serious disability because people suffering from this condition require intensive daily care from their relatives. People affected loose the use of their hands and feet due to the extent of the blistering and the retraction of the skin in these areas.
1 in every 227 people are carriers of the condition without even knowing it.
As well as suffering, those affected by EB also face a number of social and medical obstacles.
- Adequate treatment is very difficult to find due to the rarity of the disease. There are still only a very small number of medical consultants and reference centres available
- A lack of coordination at treatment centres, and training of social service staff means that patients are often poorly treated
- Due to administrative and legal differences between regions (Comunidades Autonomas), the economical and medical support received is not equal to all persons affected by EB in Spain
DEBRA Spain, founded in 1993, is a non profit-making organisation formed to provide support and to improve the quality of life of those affected by EB. The charity works hard to provide the following:
- Emotional and Medical support
- Full Trained Nurses
- Information and Advice
- Support for Research Programmes