We are very happy and proud to introduce the first member of the (Scientific) Advisory Board of Stichting Kans for PKAN Children: Professor Ody Sibon! For many PKAN patients and their relatives, her name is known for the research she is conducting together with Dr. Susan Hayflick of the OHSU, Portland, Oregon, USA to hopefully come to a cure for PKAN patients worldwide. The passion with which she does her work is unprecedented and admirable.

Professor Dr Ody C.M. Sibon is Principle Investigator at the Department of Biology of the UMCG. She received a very high-valued VIDI grant in 2002 and a VICI grant in 2011. She is an expert in the field of functional studies to investigate specific rare movement disorders such as Neurodegeneration with iron overload and ChoreaAcanthocytosis. She uses different animal models (fruit fly and mouse). In addition to research into basic mechanisms that underlie the diseases, the animal models are used to investigate potential therapies. (https://www.rug.nl/staff/o.c.m.sibon/)

The members of the (Scientific) Advisory Board assess (among other things) the subsidy applications for (research) projects. Requested and unsolicited, the (Scientific) Advisory Board advises the board on the use of funds and the criteria for which submitted (research) applications must comply. All members of the (Scientific) Advisory Council perform their duties unpaid.