Become an Advocate for the IFOPA

The easiest and most effective way for you to advocate for FOP is to write to your elected officials.

The more people who write and call their representatives, the greater influence we have to make a difference in the lives of those with FOP. Click here to find your Elected Officials.

While you may think that you are just one person and your voice is too small to be heard, every effort makes a difference! 

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.

We are making progress, but we need you to help advocate for more FOP research. 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. The gene discovery will not only benefit FOP patients worldwide, but will also 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.

You can make a difference!

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

Additional Resources: 

- FOP Free Awareness Items 
- What is FOP Advocacy? 
- Tips for Letter Writing
- Sample Letter