NCL-Entrance-page - About Us

The NCL Foundation


In 2002 the NCL Foundation was founded by Dr. Frank Husemann, after his then 6-year-old son Tim was diagnosed with NCL. Neuronal Ceroid Lipofuscinosis is a rare metabolic disorder which leads to increasing loss of nerve cells. It is the most common form of childhood dementia. Affected children suffer a slow process of degeneration which leads to blindness, mental deterioration, loss of motor function and epileptic seizures. Many NCL patients don't survive past their thirtieth year.


Aims and Strategies | Organisation Chart | The DZI Spendensiegel


Aims and Strategies


Early detection of this disease is critical in being able to deliver measures to delay symptoms in a timely manner. Therefore the NCL Foundation initiated and organised NCL Training and lectures for various groups of doctors and medical specialists. The foundation is also represented by speakers at national conventions. Alongside doctors, students as well as pupils and teachers are also important partners of the foundation in the fight against childhood dementia and NCL.



As a neutral authority, the NCL Foundation is building an extensive network of specialist doctors and scientists, in order to combine and co-ordinate inter (national) knowledge. It successfully brings together specialists from different disciplines to apply their knowledge to NCL. This reduces duplicated research and enables new co-operation. To this end, the foundation organises an annual NCL Congress. Furthermore the foundation promotes investigation into the biochemical and physiological reasons behind the origin of the disease, as this is crucial in the development of treatment.



Research and promotion are closely linked. The foundation initiated specific NCL research projects, e.g. through the promotion of stipends or the introduction of experienced partners for new co-operation. In 2009 the foundation presented the NCL Research Award for the first time, with a prize in excess of 50,000 Euros. The fourth and fifth research prizes were remunerated with 100,000 Euros. The money is directly invested into national and international research and postdoctoral projects. The prize honours the engagement to new ideas in the investigation of NCL.



With varied and regular fundraising events and media co-operation the NCL Foundation hassuccessfully raised awareness of NCL. The foundation is supported by a number of engaged individuals, firms and advocates from politics, science and the media, such as, among others, Eva Luise Khler, Josef Liefers and Thorsten Schrder.


Organisation Chart


The DZI Spendensiegel

The NCL Foundation carries the DZI Spendensiegel(German Central Institute for Social Issues Seal of Approval), which proves that we treat all money entrusted to us with care and responsibility. 253 organisations worldwide carry this seal, 174 in Germany and 7 in Hamburg. The NCL Foundation is one of three foundations in Hamburg who can carry the seal.


We voluntarily commit to fulfil the DZI standards and to achieve the highest standards of quality, so that you can be sure that your donations will be used directly and meaningfully.


This German - English translation was done by the translators Tizzy Mann, Andrea Murphy, Kate Humby and Marcia Neff for the PerMondo initiative that involves providing free translations for NGOs. PerMondo is sponsored and run by the translation agency Mondo Agit.