In Sept 2002, Hayden was diagnosed with FOP, a rare debilitating bone condition that will eventually leave him frozen in his own body unless a cure is found. At the time there was no cure or therapies available. In 2006, the gene mutation which causes FOP was discovered and since then the race has been on to find a treatment and a cure. While there are several drug trials going on right now which, if FDA approved, will provide a treatment for FOP. It is gene therapy that will ultimately be the cure for Hayden and the rest of the FOP community.
For the third year in a row, our FOP community will come together for In Pursuit of a Cure- an annual global event that supports the IFOPA's first-ever gene therapy research program and helps support the advancement of clinical trial research. Please join me in supporting this program by donating here.