In Honor of Haley Ng
Haley is a cheerful, creative and smart girl. She loves Elsa, panda and art in all of its forms. At the age of three, Haley started presenting with FOP symptoms. In July 2019, Haley was diagnosed with an exceedingly rare condition called fibrodysplasia ossificans progressiva, or FOP.
What is FOP?
FOP is one of the rarest, most disabling genetic conditions known to medicine. It 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.
How You Can Help
We're fundraising to help the IFOPA fund research to find a cure while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide.
All donations will go directly to the IFOPA. The IFOPA is a 501(c)(3) nonprofit organization. If you have any questions, please contact Cathryn Roys, IFOPA Fundraising and Special Projects Manager, via +1 843-709-3244 or email.