Nicoline BM Voet MD PhD, Rehabilitation physician, Rehabilitation Center Klimmendaal, Radbound University Medical Center, Arnhem and Nijmegen, The Netherlands

Biography

Nicoline (Nicole) Voet (April 15th 1983, Nijmegen, the Netherlands) defended her thesis with the title “Aerobic exercise and cognitive behaviour therapy in FSHD: a model based approach” in 2016.  Her PhD project covered not only applied rehabilitation research, but also more fundamental research using MRI measurements in several collaborations.  In 2017, she received the European Rehabilitation PhD prize for her thesis. Currently she works as a rehabilitation physician and researcher at the department for neuromuscular diseases in rehabilitation center Klimmendaal, Arnhem, the Netherlands, and at the Muscle Center in the Radboud University Medical Center Nijmegen, the Netherlands. Voet is acknowledged as an international expert on FSHD, fatigue and on training in neuromuscular disorders. She is author of the Cochrane review “Strength training and aerobic exercise training for muscle disease” that has currently been cited 251 times and is also one of the most often accessed reviews from the Cochrane Neuromuscular Disease group.

In her free time, she is involved in top sport: triathlon and finswimming. In 2018, she has been awarded sportswoman of the year in her home village Wageningen.

Department of Neurology
Hadassah University Hospital
Jerusalem
Israel

Ingrid de Groot (The Netherlands, 1970) was working fulltime  as a counsellor/ social worker for child protection services, when myositis eventually ended her professional career in 2015. She then decided to dedicate her time and energy on patient advocacy and patient work. She chairs the myositis working group of Spierziekten Nederland (Dutch patient association for neuromuscular disease). 3 years ago she joined the OMERACT (Outcome Measures in Rheumatology) Myositis Working Group as a Patient Research Partner and as such has co-authored articles about their patient centered research in PRO’s regarding quality of life, which were published in the Journal of Rheumatology. Recently her article about that study as first author was published in the Dutch Journal of Rheumatology. Other projects she is involved in are EULAR ( Patient Research Partner and member of the study group for collaborative research) and finally she is member of a patient board which evaluates grant applications for research in neuromuscular disease for Prinses Beatrix Spierfonds.

Kees van der Graaf, Chairman of FSHD Unlimited, The Netherlands

Master Business Admin of University of Twente. 32 years with Unilever. Last role Member of the Board of Directors, and the Unilever Executive Committee. Area of responsibility President UNILEVER Europe. Retired from Unilever in 2008.

Joined the business school IMD in Lausanne as executive-in-residence (2008-2012). Non-executive director of several listed and private companies (2005-present). Founder and (former)chairman/president of FSHD Stichting, FSHD Europe, Spieren voor Spieren, FSHD Champions, and Facio Therapies.