In this podcast episode for the 2024 Advocacy Series, IFOPA Family Services Manager, Hope Newport speaks with 12-year-old Maria and her mom Felicia Wray about navigating support systems in school, social and the healthcare setting. Maria shares specific experiences of her journey growing as an advocate while Felicia provides incredible insight into the thought-process and factors that guided their decisions in creating a supportive environment as parents.

Resource Webinar

People with FOP often share that they feel alone in their journey navigating life with FOP. The difficulty in explaining the specifics of life with a rare disease to others can make forming an engaged support network a challenge. Jaymi Dormaier, LMSW and licensed therapist, shares practical tips to strengthen current relationships and make new connections in the community and school and professional settings.

Community Panel

FOP community members Jon Krisman (father of a child with FOP), Sunil Ladwa (father of a teen with FOP), and Yicela Paola Quinto Bolan (adult with FOP) share how having a support network on the personal, community and regional level has positively impacted their journey with FOP.

Explore the Resources Discussed in the Community Panel

• Advocacy Series—Resource Webinar: Learn why support systems are important and gain insights on how to approach others and cultivate your support system from a licensed therapist and social worker.
• Awareness Day: April, 23 is Global FOP Awareness Day. Together, we can decrease dangerous misdiagnosis and ensure individuals with fibrodysplasia ossificans progressiva (FOP) receive the care they deserve. This day is also a powerful opportunity to build awareness and support in your community.
• Awareness Materials: To support the community in raising awareness of FOP, the IFOPA is pleased to provide FOP awareness items free of charge. Items include: #cureFOP bracelets, FOP Awareness Cards and #cureFOP Tattoos
• ICC on FOP: The International Clinical Council (ICC) on FOP was established to help consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP. The ICC is an autonomous and independent group of 21 internationally recognized clinician experts in FOP.
• FOP National Organizations Near You: The work of the IFOPA is supported and complemented by national organizations across the globe. Organizations are listed on our website, along with their local websites, social media pages and an email contact, if available. These organizations serve the FOP community and connect individuals and families with resources and other FOP families on a regional and national level.
• Science Made Simple: Quickdraw video explaining FOP