To get an impression what the PKAN disease is all about, every day another battle…

We thank Janis Healey, grandma of Riley (8 years old), for her openness and effort to raise funding for a cure against PKAN. Worldwide everyone is putting in all effort to make sure Stichting Lepelaar (NL) and the Spoonbill Foundation (USA) can develop and produce a cure as soon as possible… cause everyday counts!

Read the whole story here: http://www.dailymail.co.uk/health/article-4789870/Grandmother-opens-grandson-s-terminal-illness.html