MSS full horizontal transparantThe board of the Marshall-Smith Syndrome Research Foundation currently consists of three highly experienced professionals and two parents of a child with MSS. The board members receive no remuneration. Otto Mak (not a board-member), has taken up employment because of project work funded by PGO-The Netherlands. The current board members are:

gertjanGertjan Kamps is otorhinolaryngologist and since Summer 2021 he is Member of the Board of SJG Weert Hospital. In 2000 he finished his Master of Medicine at the Maastricht University. From 2014-2021 Gertjan has been chairman of the Medical Staff in SJG Weert Hospital.

 

henk willemHenk-Willem is managing director of the NSGK (Dutch foundation for disabled children) in Amsterdam. Henk-Willem studied Fiscal Economics at Maastricht University from 1994 - 1998. After his study he worked for eight years as a tax consultant in The Netherlands. From 2006 - 2015, he was successively lecturer, operations manager and school leader. In 2016 he was Deputy Director at Junis, an organization for childcare.

Henk-Willem has worked as a volunteer for various social organizations. At the moment, he is member of the Board of Stichting Present in The Hague (www.stichtingpresent.nl/denhaag).

His son Joas (2006) is diagnosed with Marshall-Smith Syndrome.

pamela hahn 2016Pamela Hahn is a teacher at a vocational school. After her apprenticeship as a bank clerk she studied business education (and management training) in Nuremberg. Afterwards she finished her traineeship as a teacher and since 2010 she has been working at the business college in Bad Neustadt (Germany). In 2004 her daughter Maya was born with the Marshall-Smith Syndrome. Besiders her diverse jobs in local clubs/associations and in parents`councils she has been a Board Member of the MSS Research Foundation since 2016.

rudi

Rudi Buis studied Journalism and Communication at Ede Christian University and then worked as a regional reporter for several local newspapers and the national news agency GPD, where he served as a general and political reporter – making reports in the Netherlands and in many (conflict) regions in the world. Rudi then (2009) started working as a senior mediaspecialist and (crisis) communicationspecialist for Leene Communication and the insurance industry. In 2018, Rudi made the switch to the Dutch national government a spokesperson for several Ministers of the Ministry of Agriculture, Fisheries, Food Security and Nature (LVVN). Rudi is now the manager of the Directorate of Communication of this ministry. Besides his work for the MSS foundation, Rudi is socially active for the Bethlehem Church in The Hague and football club SVV Scheveningen.

Jan KadijkJan Kadijk studied urban and regional planning and worked for twenty years in the field of knowlegde dissemination on urban planning and housing. He has lead the project ‘New map of the Netherlands’, a public geodatabase that opened up an overall view of all urban plans and building projects in the Netherlands. At the start-up company Smartsensors.me (started in 2014), he is committed to push smart cities forward by bringing sensing solutions to all stakeholders involved in the smart city. At the moment, Jan is Knowledge & Innovation Manager of the Dutch Green Building Council.

  • Prof. Raoul C.M. Hennekam MD PhD (Emeritus Professor of Clinical Genetics and Dysmorphology, Institute of Child Health/Great Ormond Street Hospital for Children University College London and Professor of Pediatrics and Clinical Genetics, Dept of Pediatrics, Academic Medical Center, University of Amsterdam)

Otto

Otto Mak is industrial engineer with experience in Healthcare. After studying Industrial Engineering at Twente University (1991-1996) he started his career in recruitment of technical staff. In 2003 he switched to healthcare, first at Vierstroom as a teammanager in a nursing home, from 2005 to 2010 at the same company as advisor Care Logistics & Operations, focusing on home care. From early 2010 to mid 2015 he worked at franchisecompany De Drie Notenboomen. As a franchisemanager he contributed to the development of Thomashuizen and Herbergiers in the Netherlands.

Since October 2015, the board of de MSS Foundation has appointed Otto as Director.

© 2023 MSS Research Foundation