NCL Stiftung in Germany
Childhood Dementia (neuronal ceroid lipofuscinosis, or NCL) is a deadly metabolic disease that has barely been researched until now. Affected children lose their eyesight, suffer from epileptic seizures and steadily lose all mental and physical capabilities. Usually, they die before the age of 30. The NCL Foundation is dedicated to promoting national and international research in order to give affected children hope that new treatment and healing approaches will be found.
After his six-year-old son, Tim was diagnosed with neuronal ceroid lipofuscinosis (NCL), Dr. Frank Husemann founded the non-profit NCL Foundation, which he supports in a voluntarily capacity. The NCL Foundation is the largest single sponsor of scholarships in this field and connects research worldwide.
Until NCL is correctly diagnosed, about two to four years and various consultations are required. To shorten this time and avoid a high number of misdiagnoses, it is necessary to educate ophthalmologists and paediatricians. Currently, there are 13 known types of NCL. A gene test gives certainty if there is a mutation of the NCL gene, which causes the disease.
We aim to highlight the work NCL Stiftung are doing both in spreading awareness of this condition and through funding their research activities. Because comparatively small numbers of children suffer the medical and pharmaceutical companies do not see developing cures or treatments as commercially viable. So NCL Stuftung needs our help to raise vital funds and make more people aware.