Thanks to your generosity almost 40,000 Euros has been raised
DEBRA Spain is one of Op de Beeck & Worth’s chosen charities, so we’re delighted to report that last month (June 2016) the charity’s annual Golf & Dinner raised €37,012 for the “Butterfly Children”. This was the charity’s 14th year, and once again we got to witness first hand, people’s commitment and incredible generosity. This year 208 players participated in the golf tournament which was hosted by the prestigious Aloha Golf Club.
In the evening, we joined some 200 people for dinner, live music and fireworks. During the evening, we heard from 15 year old, Luis Lima, who gave an emotional speech recounting day to day life living with the disease. Luis graciously thanked all the employees and volunteers for making this event one to remember.
Amongst the honoured guests was New Zealand legend and golfer Michael Campbell, AKA “Crimbo”, who donated €1,000, as well as an item for the auction. All proceeds from the 14th annual Golf and Dinner event go to support families in Spain, dealing with or being diagnosed with Epidermolysis bullosa (EB).
Back in 2015, Debra forged a partnership and agreement with the Ministry of health, as well as the regional governments of Spain, for free dispensing materials desperately needed in the treatment of this disease. The costs incurred by families coping with the disease, can pay anywhere between 200€ and 2000€ per month, which can leave some families in severe debt.
What is EB or Epidermolysis Bullosa?
Epidermolysis bullosa (EB)
EB is also known as “Butterfly Skin”, and is a very rare genetic condition where the skin and internal body linings blister at even the slightest touch. This in turn causes very painful open wounds. According to research, EB affects 1 in 17,000 children, and there are currently 1000 people diagnosed with EB in Spain.
For many affected by EB, the blistering is not only limited to the skin, it also effects the inner body linings like the mouth and oesophagus. As you can well imagine, eating solid foods for those affected is almost impossible. In turn, the disposal of bodily waste can be incredibly painful. One direct result of EB is malnutrition, and with children this can be very dangerous.
It’s because of rarity of the disease that they depend upon the generosity of people just like you.
DEBRA – The Continuing Mission
DEBRA Spain’s mission is simple – to offer specialised care to those who need it. They are proud to offer support to people and families affected by this disease. One of the major aims of the charity is to provide real hope by directly supporting the scientific research, which will one day be instrumental in finding a cure.
As a registered charity, DEBRA focuses on three very important areas:
- Provide the social care needed to help people live with dignity.
- Provide a specialist nursing service, whose focus is EB, thus delivering the best possible healthcare to children and adults with the disease.
- Support scientific and often pioneering research needed to find an effective treatment for EB.
Without the continued support of people like you, who so generously took part in the annual Golf and Dinner, many adults and children would go without the vital care that they need.
If you would like more information about DEBRA Spain visit the website at http://www.debra-international.org/debra/national-eb-groups/spain.html