IFOPA Podcast Series

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.

Rare Disease Advocacy and Rare Bone Community Connections

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…

FOP and Preparing for a Medical Emergency

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…

Now I Have Found My Voice

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…

Creating Wraparound Support for Your Child with FOP

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…

Insights on Access from the Rare Disease Community

Vocational Rehab as a Funding Source

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…

A Sneak Peak at the 2023 FOP Family Gathering

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…

Empowering the Caregiver

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…

Supporting the Caregiver

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…

FOP is a Part of My Life, but it Isn't My Life

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…

College, Careers and Pursuing a Vocation

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.

Advocating for Mobility and Independence

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…

Feel It to Heal It

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…

Advocating in the Medical Setting

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…

Your Personal FOP Journey—Why It's So Important for FOP Research

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…

Fighting FOP in the Land of the Midnight Sun

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…

Advocacy At All Ages

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…

Oh yes, Honey!

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…

Creating a Story with Impact

In our February episode of the IFOPA podcast series, IFOPA Family Services staff Hope Newport interviews Shannon von Felden, Rare Disease Legislative Advocates and Katie Burns, SmithSolve to discuss…