It’s time to swing for solidarity, birdie for the Butterfly Children and dance for their future at the “XIV Butterfly Children Golf and Ball” on the first weekend of June at Aloha Golf Club
Plans for the 14th Butterfly Children Golf and Ball are well underway. Both events will take place on the first weekend of June at Aloha Golf Club in aid of the Butterfly Children Charity (DEBRA).
For the golfers the events begin on Saturday 4th June with a Stableford Individual Golf Tournament at Aloha Golf Club. For only €75 players can enjoy this beautiful course with the opportunity to win €10,000 worth of prizes including prizes on every hole.
For those who like to be entertained, Sunday 5th June hosts a ‘Night under the stars’ on the breath taking terrace of Aloha Golf Restaurant. Tickets at just €55 include a delicious 3 course meal with wine and live music from the fantastic ‘Ricky Lavazza’ and ‘Mr Maph, Simone Lisa and their band’ guaranteed to get you dancing.
The “Butterfly Children” Golf & Ball is supported by professional golfer Miguel Angel Jiménez who, every year donates a unique piece of golfing memorabilia to be auctioned during the gala dinner as well as many other luxury golf items and prizes.
All in all, two fantastic events put together for a great cause: to support those suffering one of the most painful conditions known to medicine: Epidermolysis bullosa (EB) or Butterfly Skin. With skin so fragile it is comparable to the wings of a butterfly, just the slightest touch can cause a serious blister, making hugs and everyday human contact difficult. With many differing degrees, the condition can also affect the body internally, leading to severe physical pain and disability.
For reservations contact email@example.com 952 816 434 http://www.butterflychildrencharity.com
ADDITIONAL INFORMATION ABOUT THE BUTTERFLY CHILDREN CHARITY (DEBRA SPAIN)
Founded in 1993, is a non profit-making organization formed to provide support and to improve the quality of life of those affected by Butterfly skin and their families in Spain. The charity works hard to provide the following:
• Emotional and medical support to families and carers, as well as social services professionals with information and guidance.
• Fully trained nurses who travel throughout Spain visiting families in their own homes.
• Information and advice on all aspects of the disease, coordinating with doctors and health services to ensure patients receive the correct treatment.
• Support for research programmes into a possible cure.
• Media campaigns to promote awareness and raise funds through numerous events and charity shops.
• A number of yearly national meetings to bring affected people together, as well as conferences for medics and other professionals.
• A link to DEBRA in all other countries. Member of DEBRA International
• Continuous work to obtain private and public grants.
ABOUT THE BUTTERFLY SKIN CONDITION:
Butterfly Skin (Scientific name Epidermolysis Bullosa or EB) is an incurable, rare and terrible genetic condition that affects the skin. It causes the skin to endlessly blister, shear and scar. In severe cases it hurts to walk, eat and bathe.
The skin can be so sensitive that the body must be wrapped in gauze to protect it from the mildest friction. Even the brush of a bed sheet can cause another burn-like blister. 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.
Butterfly skin also becomes a disability because people suffering from this condition require intensive daily care from their relatives. They also tend to lose the use of their hands and feet due to the extent of the blistering and the retraction of the skin in these areas. Life expectancy is unfortunately short; hence the majority of our members are children.
Read our guest blog by journalist Rebekah Thompson who attended the 10th edition a few years ago
In this section members new and old are encouraged to post news and information about events taking place in Andalucia.
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