Steering committee

Chair holder : Doctor Emmanuelle Leray

2 representatives of the EDMUS Foundation Board of Trustees :

• Professor Sandra Vukusic :

  EDMUS Foundation Board Chair & President of the EDMUS Foundation OFSEP Scientific Coordinator (Observatoire Français de la Sclérose en Plaques)

  Neurologist - Head of Neurological Department, Pierre Wertheimer Neurological Hospital (Bron)

• Professor Thibault Moreau :

  Neurologist - Head of Neurological Department, François Mitterrand Hospital - CHU Dijon Bourgogne (Dijon)

2 representatives of the EHESP :

• Sylvie Ollitrault :

  Director of Research, EHESP

• Jean Pierre Le Bourhis

  Director of the ARENES UMR 6051 laboratory – CNRS, EHESP, INSERM, Sciences Po, Universities of Rennes 1 and 2

2 representatives of the OFSEP

• Professor Gilles Defer

  Neurologist – Neurology Department,CHU Caen Normandy (Caen)

  Manager of the MS Resources and Skills Center in Normandy

• Professor Marc Debouverie

  Neurologist – Neurology Department - Centre SLA, CHU de Nancy - Hôpital Central (Nancy)

2 external personalities with recognized expertise

• Cécile Hernandez :

  After a able bodied career in BMX and then in snowboarding, Cecile was struck down by her disability in 2002. She woke up, her legs completely paralyzed, on October 21, 2002 and 4 days later, she was diagnosed with multiple sclerosis. After several months in rehabilitation centers and the mourning of sport, she found her resilience in writing, then turned to journalism and gave conferences. In 2013, an encounter changed her life and allowed her to go back to disabled snowboarding. In March 2014, she took part in the Paralympic Games in Sochi and won an historic silver medal. This medal will change her life. She quitted journalism and devoted herself fully to sport. In 2018, she won 2 new medals at the Paralympic Games in Pyeongchang: silver and bronze. And finally on March 7, her dream came true, she won the sporting grail by winning GOLD at the Beijing 2022 Paralympic Games. Cecile is an hyperactive mother, an invisible disability activist. She was decorated with the Legion of Honor in 2019, elevated to the rank of Officer of the Order of Merit in 2022 and also consecrated in the Ranking of Influential Women Forbes 2022.

• Géraud Paillot :

  After twenty years of international career, Geraud was stopped in his tracks by a MS, which gradually encouraged him to change his vision of the world. A few years later, as he seeks to restore meaning to his life, he decided to paddle with the disease rather than continuing to row against it. In 2017, he embarked on Hustive… Human and Sporting adventures, to meet himself and others.
  
  

Orientation Committee  

• Dr Emmanuelle Leray - Chair Holder
• Dr Romain Casey - Epidemilogist, OFSEP (Lyon)
• Dr David Veillard - Specialist in Public Health & Social Medicine (CHU Rennes)
• Pr Sandra Vukusic - President, EDMUS Foundation & Neurologist (Lyon)
• Dr Caroline Papeix - Neurologist, Hôpital Pitié-Sâlpetrière (Paris))
• Dr Delphine Moreau – Teacher-researcher Sociology, EHESP
• 1 external personnality : to be confirmed