In the summer of 2011, we started our FOP journey. Between June 2nd and July 28th, Zip saw 34 doctors before we got the final diagnosis of FOP. The diagnosing physician told us not to google Fibroydisplasia Ossificans Progressiva (FOP). They had never seen it before, it was way too rare, we were to just wait for the genetic lab work to return.
Of course the first thing I did was look it up. 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. After reading about the clinical characteristics of the condition, I didn’t need to wait for the lab to confirm. Zip definitely has FOP.
The journey of FOP from 2011 to present has given fears but also a great sense of community. There are currently only about 900 patients worldwide with FOP. Fundraising for a treatment is critical to the FOP community. There are currently nine different treatments in different stages of developments for clinical trials. It is an exciting time, but there is still a lot of work to be done.
Please join us on Saturday, October 1st, 2022 for ZipperQ 11. All funds go directly to the IFOPA to fund the mission of the organization and research. The event will be held from 3-7p at the Claremore Expo parking lot with BBQ tasting beginning at 4:00. Tasting kits are $10 each and you definitely won’t leave hungry! There will be free music, kids games, and beverages. Raffle tickets will be sold for a Hasty Bake Legacy Grill for $10/piece.
Claremore, thank you for your loyal and continued support.