NCL Foundation

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NCL Foundation
Legal form: non-profit
Purpose: Research into child dementia NCL
Chair: Frank Stehr
Consist: since 2002
Founder: Frank Husemann
Seat: Hamburg
Website: www.ncl-stiftung.de

The non-profit NCL Foundation campaigns against the rare child dementia neuronal ceroid lipofuscinosis (NCL). It was founded in 2002 by Frank Husemann after his child was diagnosed with NCL. The aim of the foundation is to develop a medical therapy that will alleviate the suffering of around 700 NCL children in Germany and cure the disease. The foundation is the bearer of the DZI donation seal and is financed exclusively through donations.

tasks

The main tasks of the NCL Foundation are to initiate and promote selected research projects. In addition, educational work is being promoted. Misdiagnoses should be avoided in order to gain valuable time. By organizing medical congresses and distributing information materials, the foundation increases the profile of NCL.

Projects

NCL goes to school

In cooperation with the Hamburg school authorities and under the patronage of the Bundestag member Alexandra Dinges-Dierig, the project “NCL macht Schule” was created in 2009, which takes place within the framework of genetics lessons at the upper school level. In this learning partnership, the child dementia NCL u. a. explains the mechanisms of inheritance. The school project has also been offered in Cologne since 2015.

NCL research award

The NCL Foundation regularly awards the NCL Research Prize. This honors particularly clinically-oriented projects that advance research into child dementia NCL. The prize money will be used to finance postdoctoral fellowships to implement the projects. The NCL Foundation focuses on research into the CLN3, the so-called juvenile NCL. There are a total of 13 different forms of Neuronal Ceroid Lipofuscinosis.

Research funding doctoral grants

In order to accelerate the development of a therapy against the deadly child dementia NCL, the foundation supports innovative doctoral theses in the field of NCL. Funding is possible worldwide and usually extends over 1–3 years. The research proposals are assessed by neutral experts.

Further training for medical professionals

The certified online training "Diagnostics and Therapy of Juvenile NCL", which is rated with 2 CME points, is intended to make pediatricians, neuropediatricians and ophthalmologists aware of the disease. In addition to online training, the foundation regularly organizes symposia at medical congresses, publishes specialist articles and distributes information sheets to inform medical professionals about NCL.

NCL Congress

In order to specifically close research gaps, the NCL Foundation organizes the NCL Congress every year. Renowned researchers and young scientists present their work here. This exchange of knowledge promotes cooperation on a national and international level.

Memberships and donation seals

The NCL Foundation has had the donation seal of the German Central Institute for Social Issues (DZI) since 2005.

In 2006 the NCL Foundation became the first extraordinary member of the Alliance of Chronic Rare Diseases (ACHSE eV).

The NCL Foundation has been a member of the Federal Association of German Foundations since 2015.

Awards

On October 1, 2015, the foundation's founder, Frank Husemann, was awarded the Federal Cross of Merit by Federal President Joachim Gauck. This award honors his exemplary social and voluntary commitment. In 2006, Frank Husemann was named “Hamburger of the Year” for his social commitment.

In 2015, the NCL Foundation took second place in the Aspirin Social Prize . The school project "NCL macht Schule" was awarded. The prize is awarded for social projects in the healthcare sector. In 2012 the NCL Foundation came second in the Hamburg Stifterpreis . The prize is awarded every two years to charitable foundations based in Hamburg.

In 2017, the foundation was awarded the HanseMerkur recognition prize for child protection for its work in the field of interface research between child and senile dementia.

Web links

Individual evidence

  1. ↑ http://www.manager-magazin.de/lifestyle/baren/ncl-stiftung-interview-mit-gruender-frank-husemann-a-1002026.html
  2. ↑ http://www.bayer-stiftungen.de/de/science-at-school.aspx
  3. ↑ https://www.ncl-stiftung.de/was-wir-machen/forschungsfoerderung/
  4. ↑ http://cme.medlearning.de/medlearning/ncl_kinderdemenz_rez1/index.htm
  5. ↑ http://www.aerzteblatt.de/foerderpreise/verleihung?id=2286
  6. ↑ http://www.dzi.de/spenderberatung/datenbanksuchmaske/suchverbindungen/21/?typ=mit_siegel&keyword=NCL-Stiftung&bereich=alle&laender=alle&sitz=alle
  7. ↑ Archived copy ( Memento of the original from March 14, 2016 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. @1@ 2Template: Webachiv / IABot / www.achse-online.de
  8. ↑ http://www.stiftungen.org/de/verband.html
  9. ↑ http://www.heimatecho.de/artikel/5455
  10. ↑ Archived copy ( Memento of the original from March 14, 2016 in the Internet Archive ) Info: The archive link was inserted automatically and has not yet been checked. Please check the original and archive link according to the instructions and then remove this notice. @1@ 2Template: Webachiv / IABot / bundesverdienstkreuz.com
  11. ↑ http://www.bayer-stiftungen.de/de/aspirin-sozialpreis.aspx
  12. ↑ http://www.hamburg.de/pressearchiv-fhh/3686748/2012-11-20-jb-hamburger-stifterpreis-2012/
  13. ↑ hansemerkur.csr-engagement.de: Current award winners