Who else cares about FOP?

There is a support group for people who have FOP called the International FOP Association, or IFOPA.

The IFOPA has more than 300 members who live in over 40 countries around the world!

The IFOPA publishes a newsletter called the FOP Connection.

The FOP Connection includes stories about people who have FOP, medical news about FOP, and helpful ideas of ways to make life easier.

Jeannie Peeper started the IFOPA in 1988 because when she was a little girl she didn't know anybody else who had FOP and she wanted to write to other people who had it.

Her pen pal idea turned into an international organization.

There are several doctors like Dr. Frederick Kaplan and Dr. Michael Zasloff in Philadelphia and Dr. J. Michael Connor in Glasgow, Scotland who have examined many people who have FOP.

Your doctors can call them to ask questions about FOP.

In 1992 a laboratory was started in Philadelphia, Pennsylvania.

Its whole purpose is to understand FOP, find out what causes it, and find a cure for it. Dr. Kaplan and Dr. Eileen Shore work in the lab along with several other scientists and medical students. They are studying blood, muscles, and tissues from people who have FOP to try to find out what makes their bodies different from people who don't have FOP.

The scientists are making important discoveries every year. All of us in the FOP community hope that soon we will understand what causes FOP and find treatments to stop it.

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