Since 2002 we have been investigating the field of NCL research. We want to understand what causes this fatal disease. Our ambitious aim is to develop a therapy in order to be able to cure NCL. Therefore, the € 50,000 NCL research award is awarded each year to projects that contribute to curing NCL. Furthermore we fund scholarships with our donations. Worldwide we are the biggest single sponsor in this area. To react quickly to new developments, we also offer short-term start-up support. These short projects can be extended to larger ones where appropriate.
For questions on the subjects of research and development or funding please contact Dr. Herman van der Putten.
- Call for Applications -
Special Research Prize of the NCL Foundation
Funding Amount: €200,000
1. Brief Description
With the Rare-to-Common Neurodegeneration Impact Prize, the NCL Foundation plans to support outstanding cooperative research projects at the
interface between the rare childhood dementia CLN3 (Batten Disease) and more common neurodegenerative diseases (ND’s) such as Alzheimer's and Parkinson’s disease as well as aging. With mounting
evidence for common mechanisms in the pathology of NCL and other more common ND’s, we aim to attract researchers from these fields to bring fresh ideas to both fields and increase visibility of
rare childhood dementia’s such as NCL in the wider ND field.
2.Background and Therapeutic Need
Juvenile Neuronal Ceroid Lipofuscinosis (CLN3), also known as Batten Disease, is a rare, fatal neurodegenerative disorder of childhood and the most common form of
the childhood dementia NCL which affects an estimated 70,000 children worldwide. The disease is characterized by progressive loss of vision as well as cognitive and motor decline, ultimately
leading to premature death in early adulthood. There is thus far no approved therapy that significantly changes the trajectory of this devastating childhood disease.
The early-onset neurodegenerative pathology in CLN3 offers insights into disease mechanisms that emerge decades later in common neurodegenerative conditions such as
Alzheimer's disease, or age-related macular degeneration (AMD). Current research reveals substantial mechanistic overlaps between NCL with age-associated processes, including lysosomal
dysfunction, inflammatory signaling pathways, and the accumulation of ceroid lipofuscin and lysosomal glycerophosphodiesters (GPD).
These biological commonalities underscore the potential overlap in druggable pathways between rare and common diseases; improving our understanding of these
overlaps may guide the development of broader disease-modifying and aging-related therapies for neurodegenerative disorders.
3. Objectives of the Impact Prize
The Rare-to-Common Neurodegeneration Impact Prize aims to strengthen cooperative research projects that deliberately connect insights from research into common ND’s
or age-related processes with NCL research, with a focus on opening new therapeutic avenues that might benefit both conditions.
4. Thematic Focus
CLN3 / jNCL and one of the following areas:
● Neurodegenerative diseases
● Cellular ageing processes
● AMD and retinal degeneration
● Lysosomal dysfunction
5. Target Group & Eligibility
Applications are open to two cooperating research groups submitting a joint project. One group must be conducting research in the field of CLN3, and the other in
one of the areas listed under Section 4. Both groups must be affiliated with scientific institutions. No further institutional requirements apply. The call is open internationally, applications
from domestic and international institutions are explicitly welcome.
6. Selection Process
Stage 1: Submission of a brief project outline (maximum 2 pages, 12 pt, single line spacing) along with details of both project partners, to
[email protected]. If support is needed in identifying a suitable cooperation partner, the NCL Foundation is happy to assist. Please, contact Dr. Herman van der Putten or Dr. Jerome Korzelius for queries.
Stage 2: Selected teams will be invited to submit a full project application (completed project form) within six weeks.
Deadlines:
● Project outline: August 31, 2026
● Full project application: October 31, 2026
Applications will be evaluated by our research officers and members of the NCL Foundation's international scientific advisory board based on established criteria,
including scientific quality, transdisciplinary focus, translational potential, and rare-to-common impact potential.
We wish to thank our main supporters: CORDES
& GRAEFE STIFTUNG, Friedrich Flick Förderungsstiftung, Werner Reichenberger Stiftung as well as many private donators.
Postgraduate and research scholarships are awarded for up to three years. Regular reports and visits to laboratories are part of the programme. Candidates for funding can be recommended by their supervisors followed by an interview with our research leader. Here, two of them present their projects:
Lysosomal calcium ion channels may be an important target in CLN3 disease. Sukanya Arcot Kannabiran is studying this channel function at the microdomain level using high-resolution microscopes. The results could be important for both childhood and senile dementia.
Supervisor: Prof. Andreas Guse, UKE Hamburg- Eppendorf, GER
Funding Partners: Bijou Brigitte Stiftung, „Hand in Hand für Norddeutschland“ (NDR), Peter Jensen Stiftung.
Masood Ahmad Wani is investigating which pathological changes affect signal transmission between neurons in the CLN3 brain. He has already found very early changes in the NCL model that occur even before the deposits develop.
Supervisor: Dr. Benedikt Grünewald, University Medical Center Mainz, GER
Funding Partners: Helga und Alfred Buchwald Stiftung, Reinhard Frank-Stiftung, Scheck Stiftung, Stiftung Bostelmann, von Poll Immobilien.
Prof. Alessia Calcagnì's project at Baylor College of Medicine in Houston, Texas, USA, focuses on the role of microglial cells in CLN3 disease. Microglial cells
are the immune cells of the brain. CLN3 patients and also corresponding mouse models show pathological changes in microglial cells.
Collaborating partners are Dr. Paolo Grumati and Dr. Davide Cacchiarelli (both TIGEM, Pozzuoli, Italy) as well as Prof. Monther Abu-Remaileh (Stanford University, CA, USA).
We thank the Werner Reichenberger Stiftung for funding this project.
Application procedure & steps
Clinical-orientated projects are particularly prizeworthy. The prize money is used to fund postdoctoral fellows, to implement the submitted project and to promote young scientists. In order to find a cure for jNCL, scientists from all over the world are encouraged to submit their projects, especially those from related fields like Alzheimer's, ageing and lysosomal storage diseases.
The 13th NCL Research Award 2023 was given to Dr. Alessandro Ori and Dr. Julia C. Heiby from the Leibniz Institute on Aging - Fritz Lipmann Institute in Jena, Germany, for their project "Targeting alterations of the lysosomal proteome in Batten disease".
In NCL, there is a pathological change in the protein composition of
the lysosomes, the “recycling yards“ of the cells. The entire set of proteins in cells is called proteome. The aim of the research work is to reproduce these changes in a
suitable in vitro model in order to be able to test therapeutic approaches.
Funding Partner: Joachim Herz Stiftung.
Please note that the NCL Research Award will not be open for applications in 2026.
Thanks to the great support of the Joachim Herz Stiftung, in 2018 we were able to announce another €100,000 grant. The Neurodegeneration Award 2018 covers a postdoctoral fellowship salary for two years. The aim is to foster and improve synergies in resarch into NCL childhood dementia and age-related neurodegeneration. Two laboratories from the above-mentioned fields must apply jointly. The postdoctoral fellow should thus have the opportunity to conduct research in both laboratories to ensure the exchange of respective expertise.
The "Neurodegeneration Research Award" 2018 was awarded to two neuroscientists from Munich and Boston: Sabina Tahirovic, from the German Center for Neurodegenerative Diseases e.V. (DZNE) and Susan Cotman, from Massachusetts General Hospital.
The Neurodegeneration Research Award is currently not open for applications.
Funding proposals can also be requested for smaller projects. These projects shoud consist of research intended for practical application intended to form the basis of new projects.
Because childhood dementia NCL is so rare, many doctors are not familiar with the disease. The consequences are numerous misdiagnoses and a diagnosis time of two to four years.
An agonising time of uncertainty for the children and families. Furthermore, an early diagnosis is also of great importance for further family planning, as NCL is a genetic disease. That is why
we are using various measures to specifically raise awareness among doctors and students.
So we organize symposia together with NCL experts at medical congresses and give lectures at clinics and in specialist circles. We also distribute NCL
leaflets for ophthalmologists and paediatricians.
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