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NCL-Stiftung: For a Future Without Childhood Dementia

Mission and Values

The NCL-Stiftung, founded in 2002, is dedicated to the mission of creating a future without childhood dementia, also known as Neuronal Ceroid Lipofuscinosis (NCL). This rare and incurable metabolic disease affects approximately 70,000 children worldwide, including around 700 in Germany, and leads to severe symptoms such as dementia, vision loss, epilepsy, and motor decline, ultimately resulting in early death[2][3].

Key Products and Services

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Research Funding: The foundation initiates and supports national and international research projects to understand the biochemical and physiological foundations of NCL and to develop new therapeutic and healing approaches. This includes the awarding of doctoral scholarships and the annual NCL Research Prize[2][5].
Awareness Raising: The NCL-Stiftung engages in extensive awareness-raising efforts among doctors and the public to increase awareness of this disease and mobilize support.
Networking: The foundation acts as a knowledge center, connecting researchers, doctors, and laboratories worldwide to pool knowledge and expertise and avoid duplicate research[2][3].

Sustainability Goals and Initiatives

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International Collaborations: The NCL-Stiftung is active in several countries, including the UK, Luxembourg, Israel, and the USA, promoting international cooperation in NCL research.
Support for Young Scientists: By awarding scholarships and organizing international meetings for young scientists, the foundation supports the scientific community in NCL research.
Public Relations and Fundraising: The foundation organizes various fundraising campaigns and events, such as the annual NCL Golf Trophy and the HEROS fundraising march, to collect donations and raise awareness for NCL[2][4].

Current Developments and Successes

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Since its founding, the NCL-Stiftung has made significant progress in research and awareness-raising. Thanks to new research approaches and targeted national and international research funding, there are now new hopes for previously lacking therapeutic and healing approaches for NCL. The foundation holds the DZI donation seal, underscoring its credibility and transparency[2][3].

The work of the NCL-Stiftung is complemented by volunteer supporters and helpers who are deeply committed to the cause. Examples include the remarkable fundraising efforts of Jan Hähnlein, who has raised significant amounts for the foundation through athletic challenges and world record attempts[4].

The NCL-Stiftung remains optimistic that through its efforts and the support of many, a future without childhood dementia can become possible.

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