Sienna was diagnosed with F.O.P. (Fibrodysplasia Ossificans Progressiva) in 2012, at age 2 after months of unexplained lumps and bumps. F.O.P. is an ultra rare spontaneous genetic disorder impacting 1 in 2 million people, which causes muscles and soft tissue to turn to bone, progressively restricting movement, leaving patients essentially frozen in place.
Shortly after Sienna was diagnosed, we discovered the IFOPA, which helped answer many of our burning questions. We believe in the IFOPA’s vision to fund research for a cure and support families. It would not be surprising if no one was working on FOP, given how rare it is, but today 38 academic institutions, 13 pharmaceutical companies and a division of the NIH are all researching or developing treatments for FOP. We are closer than ever, but our work is far from complete.
Today Sienna is a bubbly first grader with lots of friends. She loves animals and socializes puppies for Guiding Eyes for the Blind in her spare time (like her puppy friend above!). She is a star student and devours books, preferably about puppies. With the help of the IFOPA, I know Sienna can have whatever future she dreams of. But we have to stop F.O.P. in its tracks. Today Sienna’s back is completely fused from F.O.P. bone overgrowth, and her arm motion is limited. But she is lucky compared to many. We are fighting every day and have faith that research will catch up in time.
Thank you for your ongoing support – all of this is made possible by donations from generous friends like you!
The IFOPA is a registered 501(c)(3) charitable organization.
Hey that’s us at 3:20 and 3:54! 🙂