Help Cure FOP

Help Me Find a Cure For FOP!

I’m Sona. I’m nine years old and I have FOP (Fibrodysplasia Ossificans Progressiva), one of the rarest and most debilitating genetic diseases.  FOP turns muscles and ligaments to bone, locking them in place. Eventually, I won’t be able to run or walk, move my arms or talk and eat normally. 

hopegenes.jpgThere is no cure for FOP.

Yet there is hope for me and my friends!

Exciting research is close to finding treatments for this terrible disease. Please help us fund this critical work! 

Sona's Story - More About FOP - FOP Research 

How You Can Help

Donate now! Every dollar you give goes directly to fund critical research to treat and cure FOP. More about FOP Research

Why Give to FOP Research?

  • Support targeted research with real impact

  • High possibility of cure or treatment in Sona’s life

  • Benefits other bone diseases as well as wounded warriors and others suffering from extra bone growth


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Sona's Story

Sona!Sona is a bright, active and hilarious third grader. She's a voracious reader and writer, a painter and a sometimes-reluctant pianist. Her current passion is interior decorating, apparently inspired by her parents' inabilities in that area. She really enjoys playdates with her friends, keeping her little brother Taj in line, and helping-out her guinea pig Pickles.

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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... Continue reading →

FOP Research

Protein_ACVR1_PDB_3H9R.pngMuch Progress, Further to Go

The quest for treatments and a cure for FOP is incredibly active and there have been exciting developments on many fronts. Despite the rarity of the disease FOP is being studied intensively by laboratories across the country and around the world. 

Much of this scientific interest has been... Continue reading →