Helpful Resources

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. 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.

This resource is meant to help empower caregivers as support figures during their child’s stressful medical procedures. 

Summer Family Activity Guide
This guide is intended to serve as a resource for parents and families who are looking for extracurricular activities to enjoy during the school-free summer months.

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.

Back to School Checklist
Here you'll find advice on how to make sure your child is prepared to go back to school with special considerations for FOP. 

Just Whip It
"A no-nonsense guide for preparing food for individuals with chewing or swallowing impairments." This cookbook includes recipes and cooking guides for those living with FOP, created by FOP'er Nancy Sando. For questions about what is in the book, feel free to contact Nancy at [email protected]. If you would like a hard copy of the book, please contact us.

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.

Proceedings of First International Symposium on FOP
A snapshot of the First International Symposium on FOP, held September 25-26, 1991.

Service Dogs

Read about FOP patient Miriam and her service dog Yahtzee

Read about FOP patient Carli and her service dog Patience. 


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