The International Fibrodysplasia Ossificans Progressiva (FOP) Association (IFOPA) serves families living with the ultra-rare genetic disease fibrodysplasia ossificans progressiva, as well as researchers and health care providers studying and treating this disease. The IFOPA is a US-based nonprofit organization whose mission is to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. You can find us online at ifopa.org.
Training for Life: A Conversation with Daniel and Joel
In this episode of the Advocacy Series podcast, IFOPA Family and Provider Support Coordinator Melissa Davis sits down with FOP community member Daniel Licht and his personal trainer, Joel Beasley. Together, they discuss the impact of exercise and regular gym attendance on Daniel's life with FOP, and explore what recreation and staying active mean to him. In their conversation we hear how Daniel's focus on this particular hobby has helped create a sense of community, purpose and joy.
Joel Beasley is a strength and performance expert with over 10 years of experience in the fitness industry. The owner of Life Athletics in Orange, CA, Joel, is an NASM-certified Personal Trainer and a specialist in both Corrective Exercise and Performance Enhancement. He specializes in bridging the gap between rehabilitation and peak performance, ensuring his clients move efficiently and effectively in every stage of life.Daniel Licht has lived with FOP since being diagnosed at age three. After a life defined by extreme physical caution, which included minimal formal exercise and a decade of occupational and physical therapy, he has spent the last decade undergoing a personal transformation. Guided by his personal trainer, he has gained a new lease on life, evolving from a world of restriction to one of newfound empowerment and resilience.
Please note that this podcast is intended as an example of hobbies and recreation. It is not medical advice and is not intended to be used as a resource for developing an exercise regimen. We hope to showcase Daniel's personal decision to explore his physical fitness with the support of a trained professional and hope you will be inspired by his story of finding joy, strength, and community in his chosen hobby. This information is provided for informational purposes only and does not constitute providing medical advice, training, or professional services. The information provided should not be used for diagnosing or treating a health problem or disease, and those seeking personal medical advice should consult with a licensed physician. Always seek the advice of your doctor or other qualified healthcare provider regarding your medical condition.
18 Jul 2025
Navigating Life with FOP – A Sibling Story
Siblings Laura and Mark Rossano join IFOPA Family Services Manager Hope Newport for an open and insightful discussion on navigating sibling relationships when one sibling is living with FOP.
29 May 2025
Rare Disease Advocacy and Rare Bone Community Connections
Hope from the International FOP Association (IFOPA) and Neena from the Jansen’s Foundation explore the power of connection within rare disease communities, highlighting collaboration and advocacy efforts to support families worldwide in this interview episode.
Reach and audience
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YouTube views
387,349
Score snapshot 15 Sept 2025
Podcast Authority Score: 51 / 100
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Quality
68
Social presence
0
YouTube
86
Engagement
0
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