Last week, we received the wonderful news that the FOP Association in Germany (www.fop-ev.de), a patient organization, will support research in the Bone Lab Dresden that is connected to heterotopic ossification and FOP. Receiving such a generous gift from FOP eV is a tremendous honor and highly motivating! We are delighted to have the support from such an active patient group!
FOP is an ultra-rare disease that is characterized by excessive heterotopic ossification that progressively limits movement. All patients with FOP have a characteristic malformation of the great toe, thus, rendering this malformation a diagnostic criterion for the disease. FOP results from mutations in the ACVR1 gene, which encodes for the BMP type I receptor ALK2. These mutations lead to hyper-responsiveness of this receptor to various ligands of the TGFb/BMP superfamily. The Bone Lab has recently discovered the potential of Tfr2-ECD to limit heterotopic ossification in mouse models by scavenging these ligands. Future research, also supported by the Eva Luise and Horst Köhler Foundation for Rare Diseases, will investigate if this treatment also has potential to reduce ossifications in FOP.
The Bone Lab is dedicated not only to contribute to identifying novel disease mechanisms and/or therapeutic options for FOP, but also to raise awareness for this rare disease. As such, we recently participated in the ECTS Charity Run (https://www.ects2020.org/mediaroom/ects-ects-academy-charity-event-run-for-fop/), which raised funds for FOP France, and won the category for “Best Map”. We hope that with leaving this Foot print, people will be made aware of FOP.