FOP Research Petition

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FOP is caused by a fault in the ACVR1 gene.  Most cases of FOP are new.  This gene mutation happens at conception: it is an accident of nature.

A combination of shortened or turned-in toes, along with unexplained swellings across the body, can be a key indicators of FOP.  A person may also have shortened thumbs.

FOP causes the body to develop extra unwanted bone to form in muscles, ligaments and soft tissue.  This creates painful swellings called flare-ups.  Where this occurs across joints, it progressively restricts the person’s movement.

Surgery is not possible to remove the extra bone as it could trigger further flare-ups. Once the bone has developed and movement is lost, there is no way to reverse it.

There is no treatment or cure for FOP, but there are a number of clinical trials with promising results, so HOPE is on the horizon.