research funding


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. And because there are many overlaps between childhood and adult dementia, the Neurodegeneration Award was initiated this year.

 

To recieve the latest news and information about NCL research regularly, feel free to sign up for our Research Newsletter. For questions on the subjects of research and development or funding please contact Dr. Herman van der Putten.

 

A compilation of all currently funded research projects can be found in our annual review.

Doctoral fellowships

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: 

In Cooperation with Evotec, Daniela will test 2,000 compounds on a human CLN3 cell model and examine whether one of them can improve the condition of the defective neurons. Thanks to its infrastructure and many years of experience Evotec is the ideal partner to carry out high-throughput-screenings.


Supervisor: Dr. Guido Hermey, UKE, Hamburg
Funding Partners: Heinrich Hartmann Stiftung

Doctoral student Daniela Borchert
Doctoral student Daniela Borchert

Katarzyna studies how mitochondrial-lysosomal signaling differs in the absence of CLN3.The ultimate goal is to tease out metabolic consequences of CLN3-deficiency in the hope that this will generate new insights into perturbed pathways to be corrected and therapeutic approaches.


Supervisor: Dr. Nuno Raimundo, University Medical Center, Göttingen.
Funding Partners: dgroup, Hans Rosenthal Preis, HAORI-Stiftung Bremen, Heinz und Heide Dürr Stiftung, Online-Aktion von Julia Risel, von Poll GmbH.

Doctoral student Katarzyna Wieciorek
Doctoral student Katarzyna Wieciorek

Heart problems are a typical accompanying disease of NCL. In her research project, Emily is investigating cardiac muscle cells which host the NCL defect to find out their functionality.


Supervisor: Dr. Katja Rietdorf, The Open University, Milton Keynes

Funding Partner: Batten Research Fonds, Bijou Brigitte Stiftung, Böttcher-Stiftung, NCL-Golf-Trophy, RT4 golf tournament, Stichting Beat Batten

Doctoral student Emily Coode
Doctoral student Emily Coode

Gemma has successfully used the CRISPR/Cas method to produce hiPS cells with CLN3 mutations, which are similar to patients' cells but have the same genetic background. These cells form the basis for her studies and, have become important tools for other laboratories to test potential drugs.

 

Supervisor: Prof. Dr. Hans Schöler, Max Planck Institut Münster

Funding Partners: Batten Research Fonds,  Berti Vogts, Münster Krimi Cup

Gemma Gomez Giro researches on NCL
Gemma Gomez Giro researches on NCL

Application procedure & steps

  1. first contact our research leader Dr. Herman van der Putten or call +49 (163) 738 3083 to make sure the project is in line with our goals
  2. submit a letter of intent (see download below) to present the project briefly 
  3. based on this we will decide whether to ask you to submit a full proposal. Full proposals will be examined by the board, the scientific advisory board and other external reviewers of the NCL Foundation.
Download
Application Form (Fellowship)
2020-08-21 NCL Application Form (Fellows
Adobe Acrobat Dokument 800.4 KB

Deadline: 28th February and 31st August every year


NCL Research Award

Clinical-orientated projects are particularly prizeworthyThe 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 11th NCL Research Award was presented in 2021 to Drs. An Dang Do and Forbes D. Porter of the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (NIH), Bethesda, and David Sleat of Rutgers University, Piscataway (all USA) for their project "Identifying Proteomic Biomarkers for CLN3 Disease" project. Their project involves identifying biochemical markers in cerebrospinal fluid (CSF) samples from patients with juvenile NCL (CLN3). Developing therapeutic options for CLN3 remains a challenge as long as there are no biomarkers that can be used for reliable disease diagnosis and monitoring. The awardees plan to analyze a large collection of CSF-samples from CLN3 patients with the goal of finding such biochemical markers that correlate with the disease pattern and progression of CLN3 disease. With the help of the $50,000 prize money the award-winning research idea will be implemented in collaboration between the NIH and Rutgers University, where the analyses will be performed.

Funding Partner: Joachim Herz Stiftung, IQVIA Commercial GmbH & Co. OHG and Lieselotte-Paulsen-Stiftung.

Dr. David Sleat, one of the three awardees of the 11th NCL Research Award. ©David Sleat.
Dr. David Sleat, one of the three awardees of the 11th NCL Research Award. ©David Sleat.

Application procedure & steps

  1. first contact our research leader Dr. Herman van der Putten or call +49 (163) 738 3083 to make sure the project is in line with our goals
  2. submit a letter of intent to present the project briefly 
  3. based on this we will decide whether to ask you to submit a full proposal. Full proposals will be sent out for peer review to at least two reviewers. We welcome recommendations for independent expert reviewer candidates, as well as proposals for exclusion due to potential conflict of interest.

Neurodegeneration Award

Thanks to the great support of  the Joachim Herz Stiftung,  we were able to announce another €100,000 grant. The so-called 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, endowed with 100,000 euros, goes 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, will use the prize money to research commonalities between dementia in children and adults.

 

The focus of the two-year project are the immune cells of the brain. For all their differences, childhood dementias share a number of similarities with Alzheimer's disease. These include the activation of the brain's immune cells, known as microglia. As a result, chronic inflammation develops. The scientists want to understand how the microglia change in childhood dementia and why they enter a state of permanent activation.

 

On this basis, new targets for therapy are to be found, which could also be explored with regard to the treatment of Alzheimer's disease.

from left to right: Dr. Frank Stehr, managing director NCL-Stiftung, award winners Dr. Susan Cotman and  Dr. Sabina Tahirovic and Dr. Henneke Lütgerath, chairman of the board of Joachim Herz Stiftung. Source: DZNE / Volker Lannert.
from left to right: Dr. Frank Stehr, managing director NCL-Stiftung, award winners Dr. Susan Cotman and Dr. Sabina Tahirovic and Dr. Henneke Lütgerath, chairman of the board of Joachim Herz Stiftung. Source: DZNE / Volker Lannert.

Short Projects

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.

NCL locations worldwide
NCL locations worldwide

EDUCATIONAL WORK

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.

Download
Leaflet for paediatricians
2021 Merkblatt NCL (Kinderärzte)_EN.pdf
Adobe Acrobat Dokument 330.2 KB
Download
Leaflet for ophthalmologists
2021 Merkblatt NCL (Augenärzte)_EN_Web.
Adobe Acrobat Dokument 1.4 MB