The Foundation

The Kans voor PKAN Children Foundation supports children who suffer from the degenerative disease Pantothenaat Kinase Associated Neurodegeneration (“PKAN”). Foremost activity is raising funds to initiate and stimulate research. The patient’s perspective is central in this research. The foundation ‘Kans voor PKAN kinderen’ is founded in 2017.

The foundation is an initiative of Lex Peters and Annemieke Bakker. Lex is the grandfather of Joris, who suffers from PKAN, Annemieke is married to Lex. Currently they both are involved fulltime in the fight against PKAN.

Board:
The Board of the Kans voor PKAN Kinderen Foundation consists of 

Afbeeldingsresultaat voor hedy weijtens Chairwoman: Hedy Weijtens
Hedy used to work as the managing director of a primary school and a school for special needs children. At the moment she isalso active as chairwoman of the board of AED (Ambulante Educatieve Dienst= Outpatient Educational Services).

Afbeeldingsresultaat voor berry van middendorp Treasurer: Berry van Middendorp
Berry is the father of a son with PKAN and he works as the director and founder of Ixogroup (webshops focused on health).

Afbeeldingsresultaat voor lex peters Secretary: Lex Peters
Lex is the grandfather of a grandson with PKAN and professor in the oncological gynaecology at the Leiden University Hospital.  

Purpose:
The purpose of the Foundation as described in the Statutes

  1. Financially supporting the research that is focussed on the treatment and cure of metabolic diseases and especially the disease calles Pantothenaat Kinase Associated Neurodegeneration (“PKAN”);
  2. providing information about and the coordination of the research as mentioned under 1. for the benefit of the persons involved and interested in PKAN, het informeren over en het coördineren van het onder a. genoemde onderzoek ten behoeve van betrokkenen bij en geïnteresseerden in PKAN, including scientists and physicians.

Download our policy.

(Scientific) Advisory Board:

We are currently working hard to establish a (Scientific) Advisory Board. The members of the Board assess (among other things) the subsidy applications for (research) projects. Requested and unsolicited, the (Scientific) Advisory Board advises the Board of the Foundation on the use of funds and the criteria which submitted (research) applications must meet. All members of the (Scientific) Advisory Board perform their duties unpaid. 

Members of the (Scientific) Advisory Board:

 prof. dr. O.C.M. (Ody) Sibon

Prof. dr. O.C.M. Sibon

Professor dr. Ody C.M. Sibon is Principle Investigator at the Department of Cell Biology of the Groningen Medical University Hospital. She obtained a 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 mice). 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/)

Recommendation Comitee:

We are currently working hard to establish a Recommendation Committee. The members of the Recommendation Committee support the goals and activities of the Kans for PKAN Kinderen Foundation and ask attention for children with PKAN in the Netherlands in both their private and their business environment.