Helpful Articles and Essays
Below is a collection of articles we have assembled from various sources that we feel will offer people with FOP and their familes and friends some assistance in meeting the challenges of FOP. This list is compiled as an addendum to the Treatment Guidelines, Annual Reports and Catalog of FOP Resources, already on this site. It is also a growing compilation, with new stories added frequently. If you'd like to suggest a story to include in this list, please contact the IFOPA.
FOP and School
The needs of a child with FOP in a school setting have to do with gentle handling, preventing falls or bumps; and positioning the child so he/she can see, hear, and gain access to places (desk, floor) and school materials with the least amount of strain on his/her body as possible.
What Should Be Done to Cure Him: Lightning or the Lightning Bug (an editorial)
Frederick S. Kaplan, M.D. and Eileen Shore, Ph.D. offer this commentary on a recently published article stating the effects of the drug Dorsomorphin on the specific FOP traits. The "study makes an important contribution towards developing treatments for heterotopic ossification and possibly for FOP," state the authors, "lest we succumb to irrational exuberance, there are important matters to consider and perhaps occasion for pause."
Kids with FOP and Sports
It is a well supported fact that sports are important for all children, including those with FOP. It teaches teamwork, coordination, rule following, accepting constructive criticism, good exercise regimen for long-term health, and sportsmanship, just to name a few. Unfortunately, sports also include risks: Risks of failure, defeat, embarrassment, teasing, bullying, isolation and injury. IFOPA member Jeri Licht shares her perspective on the topic.
FOP Adults in Transition: A List of Resources
Many adults with FOP have encountered difficulty in accessing independent living services; at the same time, many of them have succeeded in obtaining the services they need by pursuing appeals as long as it took to overcome denials, and not giving up. IFOPA member Jeri Licht offers a list of resources and suggests you contact your State and Federal Representatives to help you overcome obstacles you encounter in communicating with agency and program staff.
Proceedings of First International Symposium on FOP
A snapshot of the First International Symposium on FOP, held September 25-26, 1991.