THE THIERRY LATRAN FOUNDATION

European Foundation dedicated to research in the fields of ALS and motor neurons Under the aegis of Fondation de

Thierry Latran is a 47 years old investment banker, ill and EXECUTIVE COMMITTEE under riluzole since April 2008. Encouraged by friends College A, representing the Founder (industrialists and private equity investors), he set up a - Thierry Latran, Founder Foundation with one single objective in mind : to gather - Marie-France Dubreuil, P.A. to Founder resourcesinordertopromoteandfinancethebestresearch - Luce Gendry, Investment Banker in the fields of ALS and motor neurons.“There is a lot of - Grégoire Gonnord, Industrialist THIERRY LATRAN human support, friendship, passion and eagerness to - Dominique Moorkens, Industrialist succeed. A willingness to fight, build up and expand the - Marc Senoble, Industrialist scopeoftheFoundation-whileIamaliveandafterme-like a true company, promoting excellence, efficiency and College B, comprised of Scientists results.” - Antoine Béret, Entrepreneur (biotech An initial 120 donors have signed up for grants of € 7 millions over the sector) next 10 years. The quest for more financing for the Foundation goes on - Pr Jean-Pierre Changeux, Emeritus under the impulse of Thierry. Professor at Collège de France, Emeritus Professor at Institut Pasteur, Member of A TRUE EUROPEAN FOUNDATION Académie des Sciences - Dr Laurent Ganem, Venture capitalist SET UP IN JUNE 2008 - Pr Julien Mendlewicz, Neuropsychiatrist, Thierry Latran Foundation is a non-profit-making Chairman of the European Brain Council, PhD in molecular genetics, Professor organization placed under the aegis of Fondation de France, at University of Brussels thereby implying full transparency, certification of the - François Florimond Desprez, Industrialist Foundation accounts and a corporate governance respecting (biotech sector) Fondation de France strict book of rules. In line with Thierry Latran Foundation true European scope, transnational gifts are encouraged through the Transnational Giving Europe College C, comprised of Network, ensuring that donors can benefit from their own independent representatives domestic tax deductibility schemes. - Thierry Consigny, Entrepreneur (advertising) Dedicated exclusively to research in the areas of Amyotrophic - Michel Frieh, Lawyer Lateral Sclerosis and protection of motor neurons, the - Pierre Gagnaire, Starred restaurateur Foundation presents the other following distinctive features : - Guillaume Kuperfils, Lawyer • An initial term and financing for 10 years - Xavier Moreno, Venture Capitalist • Governed by Fondation de France by-laws and Internal rules - Caroline Pacquement, PR Manager • Comprised of an Executive Committee and a Scientific Advisory Board • Objective is to distribute the full amount of donations to Research Programs, keeping administrative expenses to an absolute minimum.

Fondation Thierry Latran www.fondation-thierry-latran.org THE FOCUS OF THE FOUNDATION IS TO ENCOURAGE AND SUPPORT HIGHLY INTERACTIVE, HIGH-QUALITY EUROPEAN RESEARCH.

THE FOUNDATION SCIENTIFIC ADVISORY BOARD

Pr. Wim Robberecht (Leuven University, Belgium),Chairman

Pr. Caterina Bendotti (Mario Negri Institute, Milano, ) Pr. Linda Greensmith (University College , ) Dr. Eva Hedlund (Karolinska Institute, Stockholm, Sweden) Pr. Albert Ludolph (Ulm University, ) Pr. Vincent Meininger (Salpêtrière Hospital, Paris, France) Pr. Leonard Van den Berg (Utrecht University, The Netherlands)

• Funding research projects • Funding a yearly meeting of Thierry Latran Foundation wants to encourage all grantees in-depth investigation in the fields of ALS and One of the primary goals of the Foundation protection of motor neurons as well as is to encourage and facilitate interaction innovative approaches between teams involved in ALS research •Selection of projects for financing : projects are in Europe. reviewed and analysed by the Scientific Advisory Board; •Therefore, to promote such interaction and respective ratings and a brief report are communicated collaboration, the Foundation organizes and funds an to the Executive Committee, who then carries out its own annual meeting of grantees whose research is funded review and allocates appropriate budgets to retained by the Foundation. Such meeting involves attendance applications. of the principal investigator and presentation of the funded research projects, including unpublished data. •Grant types : Strict confidentiality rules and rules to avoid conflicts - Major Grants, circa €150,000 per year over three years, of interest are adhered to and applied. - Pilot Grants, circa €100,000 over two years •The annual meeting of the Foundation grantees is chaired by the Scientific Advisory Board Chairperson (Wim Robberecht, Leuven University, Belgium). Each principal investigator is required to attend. Additional researchers involved in the project funded by the Foundation are invited as well. This annual meeting is considered as a priority for the Foundation to reach its strategic aims. FIRST CALL FOR PROJECTS

The first call for projects was launched among the European Neurologist Scientific Community in January 2009.

• 8 PROJECTS SELECTED

• GLOBAL AMOUNT GRANTED : € 1,411,500 FOR 3 YEARS

• OF WHICH € 529,000 FOR THE YEAR 1, € 501,500 FOR YEAR 2 AND € 382,000 FOR YEAR 3 Grantees received selection notification in July 2009. Grants were made available as of 1 st September 2009, depending on the effective start of the project.

SELECTED PROJECTS :

1 Novel gene therapy approach for motor 5 Investigating the role of Tdp43, recently neuron disease through broad delivery of identified mutated gene causative of ALS, death signaling inhibitors by astrocytes. in motor neurons. Patrick Aebischer, Switzerland and Cédric Raoul, Elisabeth Fisher, England. France. 2 6 Contribution of Metabolic Dysfunction to Characterization of the biochemical and Amyotrophic Lateral Sclerosis Pathogenesis. biophysical properties of obligatory dimer proteins Jean-Philippe Loeffler and Pierre-François Pradat, representing the two major classes of SOD1 France. mutants in the C. elegans model. Christian Behl and Albrecht Clement, Germany. 7 Translational research into the role 3 of the ephrin system in the pathogenesis Study of the pathological neuro-immune of ALS. interactions between the macrophages/microglial Philip Van Damme, Belgium. cells and the affected motor neurons in animal models of ALS. Role of the transcriptional co-activator Séverine Boillée, France. 8 PGC-1a in the pathogenesis of clinical and 4 experimental ALS. Study of mitochondrial function in Patrick Weydt and Kerstin Braunstein, Germany. experimental models for SOD1-linked familial ALS by genetic manipulation of the p66Shc- ABSTRACT ON dependent molecular pathway. www.fondation-thierry-latran.org Maria Teresa Carri, Italy. 2ND CALL FOR PROJECTS Compared to other existing Scientific themes : funding bodies and charities Biological markers, pathological pathways and mechanisms, therapeutic for ALS research, what is strategies, innovative molecules in the fields of ALS and protection of motor the specificity of the Thierry neurons for an aggregate amount of up to €1 million of which up to €300,000 Latran Foundation ? is dedicated to the specific topic of stem cell therapeutic approaches in ALS. “ I think there is quite a difference between the Thierry Latran Foundation and these national Eligibility criteria : funding bodies, with who the •Teams based in Europe or part of FP7 Third Country Agreements as of Foundation should be encouraged November 09: Switzerland, Israel, Norway, Iceland, Liechtenstein, Turkey, to collaborate. The Thierry Latran Croatia, the Former Yugoslav Republic of Macedonia and Serbia, Albania, Foundation will be able to support Montenegro, Bosnia and Herzegovina. the best research across Europe, without any national barriers. •Transnational projects implying collaborations between several European The Foundation represents a research teams or institutions to be encouraged. major new initiative in European •Attendance of the principal investigator to the annual scientific meeting ALS research and I hope it will be of the Foundation to present the funded research project. a forum to centralize other funding from private sources across Europe. I also hope that the Foundation will very quickly Time Schedule become a key element in ALS - 2 nd call opened: 2 nd November 2009 e

research. I am sure that all others u q

th n

- Deadline for abstract submission: 11 December 2009 a b

ALS funding bodies will be m i

th t l

- Notification to selected parties for Full Grant Applications: 26 January 2010 a S

supportive of a new charitable :

th e

- Deadline for receipt of Full Grant Applications: 5 March 2010 u q Foundation for ALS research, i h

th p a

- Notification of Grants awarded: 8 June 2010 r because they realize that they need G é t i t n

additional players in the team e d I / r

against ALS. In these hard f

PLEASE REFER TO OUR WEBSITE . e g n

financial times, all charitable a r o

www.fondation-thierry-latran.org @ e

organizations are very much i v e d a l

FOR COMPLETE INFORMATION threatened by reduced budgets at - e n n

a time when the high costs of a : e u q genetic studies and clinical trials i h p a r

place an increasing burden g n o i t

on their resources.” p e c

Contact : n o Dr Valérie de Broglie, General Manager WIM ROBBERECHT c [email protected] Chairman Scientific Advisory Board Fondation Thierry Latran + 33 ( 0)1 58 01 21 96 / + 33(0) 6 11 90 34 68