1. 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

2. 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: kE
Italy: 6 to 10kE
Netherlands: 0
Norway: ?
Spain: ?
German Switzerland: ?
Paris
25/06/2016

3. 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 E
20KE/year

4. 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

5. 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

6. 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