...this year we're raising funds for the International FOP Association (IFOPA) and all donations will be in honor of Sienna, a local teenager who lives with FOP. All money raised will go toward research to find treatments and a cure for this ultra rare disease
FOP (fibrodysplasia ossificans progressiva) is one of the rarest, most disabling genetic conditions known to medicine. FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.
There are no other known examples in medicine of one normal organ system turning into another.
"My son and I chose to fundraise for the IFOPA in honor of our neighbor and friend, Sienna Otto. We understand the hurdles of rare diseases. With fewer affected people, allocated funds are extremely limited. Donations will help to ensure that research continues. Every dollar collected will support those living with this disabling condition while bringing scientists one step closer to a cure." -Karen and Michael Nolte