We are activ for NCL
Neuronal Ceroid Lipofuscinosis, abbreviated NCL, is a very rare, currently uncurable metabolic disorder. It is caused by a genetic defect inherited by both parents. The children affected by that disease usually grow up normally until they reach the age of five when an abrupt development of massive visual failure begins. They become completely blind during the following one to three years. During the further course of the disease the children get epileptic seizures and loose the ability to speak, to eat and to walk. NCL denotes the death penalty for our children at the age of approximately 25 years. Unfortunately, at present there are only a few eye specialists and paediatricians who have profound knowledge about NCL, but we intend to change this!
Speaking from our experience we know that there are many uncertainties concerning the care and treatment of affected children. We aim to reduce these fear of the unknown. Even though one may be sightless he still is able to SEE !
The association "Nächstenliebe e.V." was founded due to Sabine Schnaus very own biography with the help and support of dedicated friends.
One of our objectives is the expansion of our team at the children's hospital in Hamburg, Germany which as a matter of fact is the biggest NCL research group worldwide. Furthermore we understand the importance of expanding the already existing NCL - Network represented by doctors, scientists and parents as well. Every day we dedicate our work to the cause of giving these children the ability to live.
The association consists of voluntary engaged employees. There are no labour- or operating-expenses and also the association does not generate any profits. All the gained contributions are transferred to the research organisation without any charges.