Explorez tous les épisodes du podcast IFOPA Podcast Series

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.

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.

In this special episode, Hope from the International FOP Association (IFOPA) and Neena from the Jansen's Foundation come together to spotlight the power of connection within the rare disease and rare bone disease communities. They discuss how collaboration across organizations like the Rare Bone Disease Alliance and international partners has amplified advocacy, storytelling, and support for families around the world.

From celebrating global efforts, to sharing impactful grassroots stories from community advocates, Hope and Neena reflect on the importance of raising awareness, building a louder patient voice, and taking action year-round. They also highlight ways families can get involved through storytelling, legislative advocacy, and digital tools. 

Whether you're newly diagnosed, a seasoned advocate, or somewhere in between, this episode offers encouragement, inspiration, and practical steps to help you raise awareness and create change in the rare disease space.

Explore the IFOPA Advocacy Series resources.

Sign up for the Every Life Foundation action alert system.

Special thanks to our Rare Disease Day Platinum Sponsor, Regeneron Pharmaceuticals.

In this podcast episode for the 2025 Advocacy Series, IFOPA Family Services Coordinator, Melissa Davis, speaks with FOP Community Member Kathy Ford and Rare Disease advocate Kerri Engbrecht on the importance of connecting with local first responders and preparing for an emergency. 

Kathy Ford is a 39-year-old resident of South Jersey who has been employed as a local emergency dispatcher. As a person living with a rare disease called Fibrodysplasia Ossificans Progressiva, she understands the importance of being prepared as best as possible for emergencies. 

Kerri Engebrecht is Executive Director of Adrenal Insufficiency United and Tennessee's Community Engagement Ambassador for NORD's Rare Action Network. She is mom to a son with Addison's Disease, her father has Frontotemporal Dementia and she advocates for all with rare disease and their caregivers.

IFOPA Executive Director Michelle Davis recently chatted with FOP Community Member Erin Danzer.

Erin is a member of the EveryLife Foundation's YARR (Young Adult Rare Representatives) Program and in February, Erin & Michelle attended the EveryLife Foundation's Rare Disease Week on Capitol Hill.

While that experience and the YARR program have taught Erin about legislative advocacy, you'll hear in this podcast how Erin has found her voice as an advocate for both her and the FOP community. They discuss advocacy at school, the doctor's office, home, online, in Washington DC, and more.

In this episode of 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.

As part of the 2022-2023 Advocacy Series, we have been learning about various types of accessible transportation, both public and personal. One of the biggest obstacles to personal transportation is usually cost. In this IFOPA podcast, listen to FOP community member Steve Eichner explain the process of accessing financial assistance from Vocational Rehabilitation programs (available in the US) to help pay for certain vehicle modifications for employed individuals with a disability who need transportation to and from their jobs.

FOP community members Emma Albee (Adult with FOP, Maine), Tiffanie Williams (Mom, Texas), and Daniel Williams (Teen with FOP, Texas) join Family Services Manager, Hope Newport in a discussion of all things Family Gathering. Their conversation shares insight on highlights from past Family Gatherings and what to look forward to for the 2023 event taking place in Dallas, Texas, and online! 

Being an empowered caregiver creates a supportive space for the person providing care and the individual with FOP. This discussion highlights how fellow community members have partnered with their loved ones to lead by example and create a family philosophy that encourages a realistic approach to facing challenges and overcoming them as a family. Panelists include Barb Rossano (mother of adult community member Laura Rossano), David Robins (father of youth community member Lexi Robins) and Nancy Eichner (spouse of adult community member Steve Eichner.)

This discussion will include the following topics:

• Working together with your loved one with FOP
• Setting realistic goals and expectations for your family to navigate FOP challenges
• Partnering with other members of your family/support system

We've all heard the saying it takes a village...hear from members of the FOP community who share how they've found their village and the support they needed to take care of themselves AND their loved one with FOP. Panelists include Amy Gordon (mother of a youth community member Zip Gordon), Kim Hanf (mother of community member Tyler Hanf) and Tiffanie Williams (mother of youth community member Daniel Williams.)

In our conversation we discuss the following topics:

• How they found support in the immediate family, extended friend group and community level
• How to effectively communicate with others when seeking out support 
• How the support you seek for yourself can positively impact other members of your family

In our second episode of the 2022 Advocacy Series, IFOPA Family Services Manager, Hope Newport speaks with FOP community member, Laura Rossano about her journey through college to her current career field. Laura shares her mentality for facing the challenges of life with FOP and how she can now support other individuals with disabilities as they traverse their own career journeys.

FOP community member Whitney Weldon speaks about her motivation to attend college, what she's learned in her career journey so far and how she's navigated the challenges FOP and Covid lay in her path. 

In our fourth episode of the 2021 Advocacy Series, IFOPA Family Services Coordinator Karen Kirchhoff speaks with FOP mom Lisa Gillooly about her experiences advocating for her daughter Sara's equipment needs. Lisa shares stories of Sara's early exposure to tools, the trials and errors of finding tools that worked, and how the family made including Sara in family and community activities a priority. As Sara grew older and FOP began to limit her mobility more, Lisa reflects on the ups and downs they went through learning to navigate the healthcare system for access to more advanced equipment that Sara needed.

In this episode Sharon Neumann, Advanced Grief Recovery Specialist and IFOPA Family Services Manager Hope Newport explore grief throughout the FOP journey, supporting children in their grief and ways to begin to process grief on your own.

In our third episode of the 2021 Advocacy Series, IFOPA Family Services Manager Hope Newport speaks with FOP medical expert Dr. Ed Hsiao of the University of California San Francisco about the best steps to take in creating and supporting a team to address your needs in the medical setting. Dr. Hsiao speaks to the responsibilities of the patient and the various key contributors on your multidisciplinary care team.

IFOPA Executive Director Michelle Davis chats with Sammi Kile, IFOPA's FOP Registry Project Manager about the FOP Registry and how FOP patients around the world are making significant contributions to FOP research through telling their FOP story. They'll also provide a refresher on how and when to participate and get technical assistance.

In the May episode of the IFOPA Podcast Series, IFOPA Community Fundraising Manager Cathryn Roys chats with FOP advocate Lucy Mae McConnell about a special annual fundraiser she helped develop and organizes each year to raise money for FOP research. Hear how a small village in one of the most remote places on Earth rallies to support Midnight Sun Color Run every summer in the Land of the Midnight Sun.

In our second podcast of the 2021 Advocacy Series, IFOPA Family Services Coordinator Karen Kirchhoff interviews Amanda Cali, FOP mom, Advisor to the Tin Soldiers Program, Trustee of the Radiant Hope Foundation and Executive Associate on the International Clinical Council on FOP (ICC). Amanda candidly speaks about her experiences raising a child with FOP and shares the parenting strategies she used to empower her children to ensure they grew up with a self-sufficient mindset and were prepared to live successfully on their own. Amanda also discusses different opportunities she gave her sons at different ages (child, teen and young adult years) that helped them eventually become their own best advocate.

Turning hobbies and passions into a fundraising opportunity is the easiest way to raise money for FOP research and family education and support programs. Learn how FOP mom Tiffanie Williams did just that and get the buzz on her sweet fundraising and awareness project.

In this first episode of the Advocacy Series podcast, IFOPA Family Services staff Hope Newport and Karen Kirchhoff discuss what advocacy means, the different types of advocacy and 10 skills to becoming an effective advocate.