Our Board

The Board of SMA Europe is an active governing body, responsible for setting the organisational direction, procurement and use of resources, providing oversight and evaluation.

Our current Board (2021 – 2024) consists of five elected representatives of member organisations, currently SMA Schweiz, SMA Belgium, DGM, AFM-Téléthon and SMA Family Foundation Russia, who serve for a period of three years.  It is composed of a President, vice-President and Treasurer. In addition, two additional candidates were nominated and elected onto the Board.


Dr Nicole Gusset

Nicole Gusset

President (SMA Schweiz)

Nicole Gusset’s first-born daughter Victoria was diagnosed with SMA Type II in 2011. As a result of this, in 2012, Nicole founded the patient organisation SMA Schweiz of which she is the president. Her main goals are twofold: to have well-informed patients with a strong common voice through providing up-to-date scientific achievements and to build a trustful relationship with regulators, payers, pharmaceutical companies, clinicians, scientists and patient groups to develop the best potential medicine for SMA patients by campaigning for their needs to different stakeholders.

Nicole earned her PhD in behavioural ecology in Berlin, Germany and the Serengeti, Tanzania. She then worked for several years at the Swiss Federal Veterinary Office as a scientific officer and deputy head of the unit dealing with bilateral agreements with the European Union. Currently, Nicole is employed at the University of Zurich as a scientific project manager.

Yasemin Erbas

Yasemin Erbas

vice-President (SMA Belgium)

Yasemin is an Assistant Professor in Psychology, working at the University of Tilburg in The Netherlands. She is a passionate patient advocate and has a son with SMA type 1.

Yasemin is a patient representative for the Belgian-Flemish NMD association Spierziekten Vlaanderen, and one of the founders of SMA Belgium.

Eva Stumpe

Eva Stumpe

Treasurer (DGM - Germany)

Eva is mother of 2 adult kids. Her 22-year old daughter Sarah has SMA II.
She is a long time patient contact person within the DGM e.V. and also supports the Initiative SMA whenever help is needed. Since September 2017, Eva is a participant of the 3rd cohort of the EUPATI Patient Expert Training Course on R & D in medicines (together with Nicole from SMA Switzerland).
On a professional level, she works as a lawyer, supports her husband in the family business and is member of a local housing board.

Marie-Christine Ouillade

Marie-Christine Ouillade

AFM

Marie-Christine is the mother of a girl affected by SMA. She is a member of AFM Board of Directors, AFM international committee and TREAT-NMD Project Ethics Council.

Olga Germanenko

Olga Germanenko

SMA Family Foundation Russia

Olga has a daughter with SMA type 1, who was born in 2008. At that time, there was no information on prognosis and any attempts to find such information and support in Russia were unsuccessful. Olga thought that no one else should ever go through the pain, sufferance and insecurity of facing spinal muscular atrophy alone. She started by sharing her experience of dealing with SMA, first as a blogger, then a few years later, in 2014, she founded a non-profit organisation. Since 2014, she has been the President of SMA Family Foundation in Russia.