DebRA NZ relies entirely on grants, donations, help from businesses and the public to provide essential help to children and adults suffering from EB. It makes an enormous difference and enables them to live life as normally as possible with such daunting condition. DebRA does not receive any government funding.
Monies raised are used to fund specialist EB Nurses who help coordinate support, care and treatment for EB sufferers and their families around New Zealand. This allows them to be active participants in life and their communities. DebRA provides access to information on EB, current research into a cure and importantly contact with others who live with the same challenges for crucial support and advice.
Some of the proceeds of this year’s Butterfly Ball will go towards the 2009 Family Conference and Adventure Camp for young people who suffer from EB. While parents learn from international experts on EB research and treatment, children and young people with EB will have a chance to experience the excitement and exhilaration of overcoming physical challenges. Riding a horse, canoeing a river, or abseiling down a cliff are activities that many kiwi kids can enjoy, however those with EB seldom have the opportunity to try for fear of causing dreadful damage. Most importantly, they will have the opportunity to spend time together with others facing the same challenges, providing the chance for life-long bonds to be formed knowing they are not alone. |
