Who are we?
We, the creators of this site, are the parents of Yorick, a now 14-year-old boy with FOP. We live in The Netherlands, in the county ‘Zeeland’. We are the only known 'FOP family 'in Zeeland but we are in contact with some of the other 9 patients and their families who live in the Netherlands. This site is set up to share our experiences with anyone who is interested in the disease FOP or who wants to know what it's like to have a child with such a serious disease. It’s clear that a lot has changed in our lives after the diagnosis. We have set up this site to inform about it, because we think there is so much more than just the medical side of the story.
In addition, this site is our base to raise funds for research on FOP. We regularly organize fundraisers in our region to support the research at the laboratory in Pennsylvania in the United States. 75% of the money needed to keep this laboratory going, after all, comes from private donations. These campaigns are announced on the website and afterwards we will of course share the results with you.
On the homepage of the website you can see the ‘Money Thermometer’ on which you can see how much money we have raised so far by the various campaigns. The money collected will be transferred for the full 100% to the IFOPA (International FOP Association). Costs associated with the fundraisers are paid by ourselves or by our sponsors.
In addition, this site is our base to raise funds for research on FOP. We regularly organize fundraisers in our region to support the research at the laboratory in Pennsylvania in the United States. 75% of the money needed to keep this laboratory going, after all, comes from private donations. These campaigns are announced on the website and afterwards we will of course share the results with you.
On the homepage of the website you can see the ‘Money Thermometer’ on which you can see how much money we have raised so far by the various campaigns. The money collected will be transferred for the full 100% to the IFOPA (International FOP Association). Costs associated with the fundraisers are paid by ourselves or by our sponsors.
