About FOP


Fibrodysplasia Ossifcans Progressiva (FOP), is an extremely rare genetic disease in which muscle and connective tissues are replaced by bone. This new bone builds up over time, locking-up good bones and joints in a “second skeleton”, why FOP is sometimes called Stone Man Syndrome or Human Statue Disease: healthy minds trapped in a prison of bone.

The first symptoms of FOP usually appear in early childhood with painful swellings called Flares, which mark the formation of new bone. These Flares are often the result of injuries to soft tissue. Even a slight bump or bruise can trigger a flare, so normal childhood activities on the playground are suddenly fraught with danger and anxiety. 

The progression of FOP varies but the effect is grimly determined:  increasing loss of mobility and function. FOP typically starts on the neck and back, moving outward to the limbs, hands and even the jaw and fingers until the person is virtually immobilized. By their twenties, most with FOP are locked in a standing or sitting position for the remainder of their lives and require personal care for most activities. 


FOP Quick Facts

  • FOP is caused by a genetic point mutation: a single DNA “letter” is wrong on one chromosome
  • The FOP gene causes extra bone growth called Heterotypic Ossification (H.O.) that progressively restricts movement 
  • Occurs in 1 out of 2 million people, one of the rarest diseases known to medicine 
  • About 800 confirmed cases worldwide, almost 300 in the United States
  • Presents in childhood and typically misdiagnosed as cancer, leading to biopsies that make the condition worse
  • Surgery to remove the extra bone makes the condition worse
  • No effective treatments, but many good candidates 
  • Understanding and treating FOP will aid in other conditions including osteoporosis
  • Extra bone growth (H.O.) also occurs frequently after severe burns, amputations, and orthopedic surgery

Every day counts for Sona. Every day that goes by without a treatment means the disease continues its terrible progression, sometimes slowly, sometimes quickly. Every day we get closer to a treatment means Sona is less likely to face a life imprisoned by her own bones. 

Every day and every dollar counts. Please help us fund crucial research on FOP!