Patients and Families

The IFOPA values supporting families at all stages of their journey with FOP. For our pediatric community members, there may be a great deal of change to adapt to over the years and across the different support systems that will be critical to their development. We hope that the resources below can be used to support children and families as they educate others about their diagnosis and advocate for their needs.    

The Basics 

• Explaining FOP to Children: Watch Alexis Gonzales, child life specialist and therapeutic recreation specialist, and Family Services Manager, Hope Newport, CCLS discuss sharing activities, wording, and considerations for conversations with children and teens about FOP.

• What is FOP? Questions and Answers for the Children: A guidebook written for an audience of children ages 7-14, What is FOP? Questions and Answers for the Children, explains FOP in easy-to-follow terms and is recommended for younger children with adult supervision. This book was written by Sarah Steele and her mother Marilyn Hair. The authors hope that this book answers some of your questions and gives ideas about where to find more help as you adjust to living with the mysterious condition we call FOP. 

FOP, School, and Extracurricular Activities 

• FOP and School 
• Back to School Checklist by FOP Moms Amanda Cali & Rory Otto
• Age-Specific Tips for Navigating School and FOP
• Resources for Your Child's Physical and Occupational Therapy Team 
• Kids with FOP and Sports
• Summer Family Activity Guide

Medical Procedures and Considerations 

• Supporting Your Child During a Stressful Procedure: FOP can feel scary. This information is meant to help empower caregivers as support figures during their child’s stressful medical procedures
• Certificates of Recognition for Children: Regardless of how smoothly the procedure goes, it is important to try to end the experience with some positive reflection. These downloadable certificates are available to give your child a physical reminder of how they successfully contributed to the procedure.
• Transitioning to an Adult Health Care Provider: Did you know that preparation for the transition to an adult health care provider and an adult approach to managing care ideally begins between the ages of 12 and 14? Learn more about how to make this process a smooth transition for you and your child. 

Oral Health 

• Learn about the importance of oral health care and its impact on the person's overall well-being. 
• Begin the process of educating your child about the importance of research by donating your child's baby teeth to support FOP research. Email the FOP Biobank when the first loose tooth is noticed. A collection kit with instructions will be sent to you prior to the tooth falling out. Once the tooth naturally falls out, collect it and send it back.
  

Supporting Parents and Caregivers 

• Learn about our Caregiver Support Group for parents, caregivers and significant others of individuals living with FOP. Whether you're a parent or a partner, caring for a loved one with FOP is a unique experience that few can relate to. You deserve a community that understands your life and encourages you through the highs and lows. Each session is moderated by counseling psychologist Dr. Al Freedman, whose son lived for 26 years with a rare disease. Due to the conversational nature of this meeting, participants must be able to speak and understand English. The group meets monthly from Noon to 1 pm EDT / 18:00 to 19:00 CEST. Contact Family Services Manager Hope Newport at [email protected] for additional information or find the registration link on our Calendar of Events 
• Meet other patients in our Facebook/Online Support Groups and tap into the vast resources within the community.