First goal is mainly achieved by CS, so far. SCIENTIFIC COMMITTEE (SC) OF AN ASSOCIATION/FEDERATION OF PATIENTS GOALS To evaluate quality of research projects in response to a grant call (emitted by the association or by the SC itself) To warrant fair and valuable scientific & medical information intended for patients First goal is mainly achieved by CS, so far. Second goal is not really asked by associations to refered specialists. Paris 25/06/2016

HSP CASE: SC EXISTENCE IS MONEY DEPENDENT! Every SPATAX participant can clearly understand the strengh of the TWS foundation towards scientists & neurologists ! How much does ours National associations raise in money for research/year? Denmark : ? France: 20-25 kE Italy: 6 to 10kE Netherlands: 0 Norway: ? Spain: ? German Switzerland: ? Paris 25/06/2016

RESEARCH GRANTS of ASL-HSPFrance 2009-2017 Year Title Research Center Scientific advice after Grant Call Amount provided 2009 Equipment Dr Jamilé HAZAN team Pierre & Marie Curie University, Paris NO 25 000 2010 Functioning Dr Jamilé HAZAN team 2011 HSP prizes Dr HAZAN & FASSIER 8 000 Energetic, mitochondrial & lipidic metabolism in PSH Pr Cyril GOIZET Bordeaux Hospital YES 17 000 2012 Energetic, mitochondrial & lipidic metabolism in PSH Pr Cyril GOIZET Funtional analuysis of spatin along spinal motor neuron developing in zebra fish embryos Dr Jamilé HAZAN 20 000 2013 & 2014 Metabolic therapeutic intervention in patient with SPG5 HSP: SPA-M5: phase II trial. Pr DURR & Dr MOCHEL Institut Cerveau & de la Moelle, ICM Paris Salpetriere Hspital, Paris 40 000 2015 No Grant Call   None 2016 & 2017 Defective endosomal trafficking & BMP signalling: a potential pathogenic mechanism in SPG4-linked HSP Dr Coralie FASSIER Yes 2017 First animal model of the of the SPG48/56 (CYP U1) spastic paraplegia Dr Claire PUJOL Pr Giovanni STEVANIN Institut Cerveau & de la Moelle, ICM, Paris 15 000 TOTAL 207 000E 20KE/year

SO FAR GRANTED PROJECTS GO TO NATIONAL RESEARCH TEAMS Why? For the Association To keep National researchers working on HSP For the patients To know where the money they give is going to , To get back information on the use of collected money (annual GA) To be more involved in research and to continue to give To keep in hope. For the research teams In connecting with patients to be more involved Paris 25/06/2016

EURO- HSP SCIENTIFIC COMMITTEE DOES NOT OPERATE Why? OK in 2013, we nominated eminent scientists and neurologists from each of ours countries but there is no money to share! We ,patients , we have’nt power to enforce scientists and teams to collaborate: it is their own problem! 3) We have’nt yet proposed to the SC members to review and advise about common documents that we plan to place on our site. Paris 25/06/2016

To place revised docs in our site, one after one. Jean’s PROPOSAL To be realistic in: Writting documents about all key information for HSP patients, step by step, and primarily physical activity concerns for children Then involving our refered specialists in asking them to review, correct, and reapraise if necessary To place revised docs in our site, one after one. Paris 25/06/2016