Become an Advocate for the IFOPA

While you may think that you are just one person, and your voice is too small to be heard, every effort makes a difference! In fact, it is essential that you write to your elected officials. That's how grass-roots lobbying has its largest impact. The greater number of people who write and call their representatives, the more influence we have in order to make a difference in the lives of those with FOP.

Remember: FOP is serious. For those who suffer from FOP, it is a painful metamorphosis into progressive immobility and a lifelong obstacle to physical freedom.

On April 23, 2006, researchers at the University of Pennsylvania School of Medicine announced they had discovered the gene that causes FOP, a feat that accelerated research efforts as well as the attempts to find a treatment and cure. In addition, the gene discovery will benefit FOP patients world-wide and also will have great implications for millions of patients who suffer from more common bone ailments, such as arthritis, osteoporosis, hip replacements, post-amputation treatment, fracture treatment, certain spinal cord injuries and some heart valve disorders.

We Matter!

PLEASE HELP the children and adults living in bodies encased in bones. They have the same dreams, aspirations and goals as other people but unfortunately face each day with greater struggle.

We need your suppport!