IFOPA Podcast Series

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 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 t...

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 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! 

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 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 Na...

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 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...

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 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.

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 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 down...

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 to begin to process grief on your own.

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 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.

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 to FOP research through telling their FOP story. They'll also provide a refresher on how and when to participate and get technical assistance.

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 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.

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 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...

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 that and get the buzz on her sweet fundraising and awareness project.

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 why it's important to share your rare disease experience, what to keep in mind when speaking to others and two programs which were established to support the rare community in using their words as a vehicle for creating change.   FOP community members residing in the United States can partici...

Advocacy: You Can Make A Difference

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.