IFOPA Podcast Series

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 discussionof all things Family Gathering. Their conversation shares insight on highlights from past Family Gatheringsand what to look forward to for the 2023 event taking place in Dallas, Texas, and online!

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 for the modifications on his new van.

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.