October 7th 2017 Jan Lammers collected 120.000 euro together with 100 participants with the ZZF-rally for the purpose of research to fight PKAN. A great cause!
Over Stichting Kans voor PKAN Kinderen
Op dit moment overleeft geen enkel kind de ziekte PKAN. Ze worden niet ouder dan 15 jaar. Waar eerder geen behandeling mogelijk leek, is onderzoek nu in volle gang en komt een oplossing steeds dichterbij. Samen gaan wij dat mogelijk maken. Help je mee?
PKAN (Pantothenate Kinase-Associated Neurodegeneration) is a hereditary disorder that is categorized in the group of distinct rare disorders featured by an accumulation of iron in the brain of young children. Many individuals with the classic form of PKAN lose the ability to move or walk independently between 10 and 15 years after the initial indication of symptoms and will therefore require a wheelchair by their mid-teens. They often lose the ability to walk, to talk, to swallow and their vision. All this while they are often in a full state of awareness as the mental ability of children suffering from PKAN is not always affected. It is progressive and will ultimately result in the patient’s death at a young age.