Stichting Kind Beter
(Foundation Child Well)
Because every child deserves a chance to get well!
What do you do when you receive the news that your child has a genetic disease, a very rare genetic disease, and that there is hardly any knowledge available about this disease in the medical field?
You cry, everything stops around you, you get angry, you are in denial, and you cry some more… All these emotions are similar when experiencing a bereavement. But then there is also a moment when you decide you want to take action, and you feel strength and positivity and that is when we initiated to establish our foundation.
Since we got the news in 2017 that our son Fenn has the FoxP1 syndrome, we as his parents, André de Koning en Esther Kloosterman, started looking for answers, knowledge, information and possible therapies.
Why the Stichting Kind Beter?
(Foundation Child Well)
Stichting Kind Beter was established to raise funds for a large-scale study to cure FoxP1 in children. Rare diseases need private initiatives to work on healing. We are very happy that we have found the LUMC willing to help us with this. In cooperation with the LUMC, under the leadership of Dr. Van Roon, a 2-year research program has been developed. All that is needed now are the funds to actually start up the research.
In the meantime we have noticed that we are becoming more and more a platform for parents who, like us, have been told that their child has FoxP1 syndrome. In the meantime we have brought several parents into contact with each other. Dr. Saskia Koene, geneticist in training at the LUMC, has approached us, because she is going to do her PhD research on the subject of FoxP1. Soon a movie about this subject.
With this website we would like to give you more insight in the FoxP1 syndrome, in the research program and of course in the ways in which you can help us or we can help you.
For example, did you know that;
– With (possible) success in the research of Dr. Van Roon there is a very good chance that other genetic disorders are closer to a solution. The oil slick that can occur can be of great importance to both medical science and all children with rare genetic abnormalities.
– The Nobel Prize in Chemistry, awarded in October 2020, was awarded for the development of the dna cutting technique CRISPR-Cas. CRISPR-Cas is a dna technique with which the double dna strand can be cut very precisely at a specified place in the genome. Subsequently, another piece of DNA can be built in at that spot. Since its development in 2010, the technique has rapidly transformed genetic research worldwide. Biotechnologists use the technique to make plants resistant to disease and drought. Cancer researchers use the technique to develop new treatments. The dream of geneticists is to eventually also repair inheritable diseases and genetic abnormalities. This is exactly what Dr. Van Roon has in mind by using this technique in her research.
Stichting Kind Beter (Foundation Child Well) has been approved by the Dutch IRS as a Public Benefit Organisation (ANBI).