Sala Super League Golf – DEBRA ButterflyChildrenCharity
Marbella ON.tv’s Gillaine de los Santos and Darren Simons attended the final round of this year’s ‘Sala Super League’ tournament at the Santana Golf Club – Marbella in aid of the DEBRA Butterfly Children Charity
Since Sala Group’s first establishment opened its doors in 2008, Sala Group have dedicated a great deal of time to raising money for local charities and supporting those less fortunate. To date the company have raised over 32,000€ for local charities with 25,000€ raised in 2013 alone.
Sala Super League was originally created not only to provide a fantastic event for golf lovers across the coast but also to enable us to raise money for a very worthy cause.
DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB), a painful genetic condition which causes the skin to blister and shear at the slightest friction, or even spontaneously.
DEBRA focuses its work on funding pioneering research to find effective treatments and, ultimately, a cure for EB. They also provide optimal healthcare to children and adults living with EB as well as social care support to help people live with dignity. This is a service parents and people with EB can call on and reach out for advice and assistance.
Certain types of EB can be fatal in infancy and others are severely life-limiting. DEBRA estimate that there more than 500,000 people suffering from EB worldwide.
EB may be inherited in either a dominant (usually one parent carries the gene for EB and is affected by the condition themselves) or a recessive form (where both parents carry the gene but are usually unaffected, so the birth of an affected child is totally unexpected).EB can also arise through a new spontaneous mutation whereby neither parent carries EB yet the gene mutates spontaneously in either the sperm or the egg before conception.
There is currently no known cure for EB.
If you would like to make a donation please send a cheque payable to DEBRA to: Calle Jacinto Benavente nº12, 29601 Marbella, Málaga, Spain or visit www.debra.es
