FOP Awareness Day is upon us once again. Prior to 2011, I had never heard of FOP or Fibrodysplasia Ossificans Progressiva. This debilitating disease affects only 1 in 2 million. There are 800 known cases worldwide and my son is one of them.
The mutant ACVR1 gene that causes muscles, joints, tendons, and connective tissue to turn to bone was discovered 10 years ago on April 23rd. In the rare disease community, this is a huge deal. Knowing the gene for a rare disease is over half the battle. Since that time, strides have been made at finding a treatment. FOP is actually in clinical trials with Clementia pharmaceuticals as we speak and many other things are on the horizon.
If you would like to donate to the $10K for the 10th campaign, CLICK HERE.
Our family has been a part of the FOP community for about four and half years. I have to tell you, having a child diagnosed with this is life-changing. I never dreamed I would be apart of such a wonderful organization. The community is there for one another at every twist, turn, and curveball FOP can throw at you. Very few doctors know of the disease and obviously, very few are affected. Being able to reach out to the community with questions is a lifesaver for parents and those affected. Simple things like the flu become numbing experiences and they are always quick to answer and soothe any questions.
In 2015, I became a board member of the IFOPA and am proud to partner with the board and staff to help fund a treatment and support families. Not only funding research, but supporting families of those affected is critical. I would have been lost at diagnosis without the IFOPA. I will be forever grateful for their support and am happy to help old and new families alike.
The way our family personally gives back is by hosting ZipperQ. A family-friendly BBQ cookoff and auction hosted in Claremore, Oklahoma, has raised over $500,000 to fund research for the disease. We will do it all again this year. Mark your calendars and get out your smokers, because ZipperQ will be held at the Claremore Expo on October 1st, 2016.