Animation: “After the Diagnosis”
The first animation of the Kans for PKAN Children foundation is a fact! Today, it will premiere on Rare Diseases Day 2020. The animation dwells on information that is needed when you as parents have just heard the diagnosis PKAN for your child. In the future, a...
Safe travels, dear Joran
Joran had only just turned 17 when he passed away on February 3, 2020, peacefully and in the arms of his dear mother. The battle was over, he could not take it any longer and was completely exhausted. His beautiful, exuberant smile, which has given great joy to his...Talkative without words
“Stop that nonsense! I am Joris. Please leave out “He can’t talk” Everyone has experienced it. That you want to say something, but cannot find the right words. But what if you are very outgoing, a talkative soul, but have no words at all?...
Prof. Dr. Clara van Karnebeek new member of Advisory Board
Recently Prof. Dr. Clara van Karnebeek has joined the Advisory Board. Clara is a pediatrician and geneticist, associated as a professor of metabolic diseases at the Radboudumc and Amsterdam UMC. She is interested in neurometabolic disorders, and specifically the...
Devote yourself!
Chance for PKAN Children Foundation raises funds to support academic research that can lead to a cure for PKAN. One of those studies is the work of Prof. dr. Dr Ody Sibon (UMCG) and Prof. dr. Susan Hayflick (OHSU, USA). They are very busy developing a substance that...
Establishment (Scientific) Advisory Board
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....
The fight of a family against PKAN
When both parents have a gen deviation, a child born has 25% chance to have PKAN. All three of the children of family Kulsrud have PKAN. Read their poignant story: https://globalgenes.org/raredaily/a-familys-fight-against-pkan/
Grandma tells her story about the fight for her 8-yearold grandson
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...
Jan Lammers drives rally for PKAN children
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!