Today Sienna is a bubbly third grader with lots of friends. She is a star student who loves riding her adaptive bike, and she socialized puppies for Guiding Eyes for the Blind in her spare time!

With the state of the research today, we know Sienna can have whatever future she dreams of. But we have to stop F.O.P. in its tracks. After enjoying several years of good health free from F.O.P. flare-ups, this spring Sienna battled a severe shoulder flare-up, which spread up to her neck and around her left side, resulting in the loss of 65 degrees of shoulder motion. We've heard from adults with F.O.P. that the hardest thing about having F.O.P. is losing independence as you get older rather than gaining it. And now we're witnessing it first hand. Since her flare-up, Sienna now struggles to change shirts alone. She can no longer reach the cabinet in our kitchen, or the shelf in her closet. She can no longer do her own hair. And she can no longer give her parents a full hug.

Sienna isn't fazed by her recent loss of motion and is finding ways to work around her new limitations - she inspires us every day! But this flare-up has emphasized for us the urgency with which we need a treatment. Years, months, weeks and even days matter in the context of a disease that can cause joints to lock up overnight during a flare-up.

We are fighting every day and have faith that research will catch up in time. 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 at least 38 academic institutions, 13 pharmaceutical companies and a division of the NIH are all researching or developing treatments for FOP. And there are three clinical trials underway for drugs specific for F.O.P.: Regeneron's REGN 2477, Blueprint Medicine's BLU-782, and Clementia's Paloverotene.

This incredible progress would not be possible without donations from generous friends like you! Thank you for considering helping get us to the finish line!