The Thierry Latran Foundation was established on June 24, 2008 under the aegis of the Fondation de France. It is governed by an Agreement signed with the Fondation de France.
In addition to the Founding Charter, the Foundation has established Internal Rules to govern the organization and function of the management bodies that consist of an Executive Committee and a Scientific Advisory Board.
The objective of the Foundation is to redistribute the full amount of the donations it receives to ALS Research, keeping administrative expenses to an absolute minimum.
The focus of the Foundation is to encourage and support highly interactive, high-quality European research that will complement collaborative efforts existing between the U.S. ALS research groups.
In concrete terms, the Foundation has already specified several research themes supported by the Scientific Advisory Board which is composed of recognized scientist with several European nationalities. Discovery of biological markers, pathological pathways and mechanisms, therapeutic strategies and innovative molecules are the key priorities of the Foundation.
The Executive Committee will decide the allocation of funds after receiving a documented scientific advice from the Scientific Advisory Board.
Why the Foundation ?
Why is specific funding of ALS research necessary in Europe?
ALS is still considered to be a rare disease and as a result ALS research receives only limited support from government funding agencies such as Inserm and CNRS in France, and the Medical Research Council in the UK.
A small number of charitable organizations do exist within specific European countries for example AFM in France or the Motor Neurone Disease Association in the UK, but these are unable to support a pan-European collaborative project that optimizes the expertise that exists across Europe.
Compared to other existing funding bodies and charities for ALS research, what is the particularity/specificity of the Thierry Latran Foundation?
By Professor Wim Robberecht (Chairman of the Scientific Advisory Board)
“I think there is quite a difference between the Thierry Latran Foundation and these national funding bodies, with who the Foundation should be encouraged to collaborate.
The Thierry Latran Foundation will be able to support the best research across Europe, without any national barriers. The Foundation represents a major new initiative in European ALS research and I hope it will be a forum to centralize other funding from private sources across Europe. I also hope that the Foundation will very quickly become a key element in ALS research. I am sure that all others ALS funding bodies will be supportive of a new charitable Foundation for ALS research, because they realize that they need additional players in the team against ALS.
In these hard financial times, all charitable organizations are very much threatened by reduced budgets at a time when the high costs of genetic studies and clinical trials place an increasing burden on their resources”.