FOP Research Petition
Fibrodysplasia Ossificans Progressiva, or FOP, is one of the rarest and cruellest genetic disorders known to medicine.
It turns otherwise healthy children into statues: a bright mind locked inside a frozen body.
Just at the time a child should be developing their independence, FOP can cruelly snatch it away without warning.
There is no treatment or cure BUT we have hope on the horizon. We have researchers tirelessly working to change the futures for all our children.
Research into FOP receives no government funding. Help us to help the researchers by signing the petition to get the Government to provide funding to support the research into a treatment for FOP, and to make a life-changing difference to those living with FOP.
Thank you x
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.