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 t

A Sneak Peak at the 2023 FOP Family Gathering

Sep 26th, 2023 23m 43s

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 s

Adaptive Driving and Transportation

Jul 19th, 2023 30m 39s

In this episode of the 2022-2023 Advocacy Series, IFOPA Family Services Coordinator, Karen Kirchhoff speaks with FOP community member, Steve Eichner about his experience using a Vocational Rehabilitation program to provide financial assistance

Empowering the Caregiver

Nov 30th, 2022 1h 2m

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 fami

Supporting the Caregiver

Nov 29th, 2022 56m 30s

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 (

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

May 5th, 2022 45m 7s

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

College, Careers and Pursuing a Vocation

Apr 13th, 2022 26m 44s

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

Nov 1st, 2021 37m 8s

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

Feel It to Heal It

Aug 13th, 2021 40m 47s

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

Jul 16th, 2021 35m 34s

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 tea

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

Jul 1st, 2021 24m 10s

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 stor

Fighting FOP in the Land of the Midnight Sun

May 6th, 2021 21m 6s

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 rese

Advocacy At All Ages

Apr 19th, 2021 27m 23s

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 Int

Oh yes, Honey!

Mar 5th, 2021 26m 1s

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 fundraisin

Creating a Story with Impact

Feb 22nd, 2021 20m 51s

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

Advocacy: You Can Make A Difference

Feb 11th, 2021 30m 31s

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.

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