16本のエピソード
IFOPA Podcast Series IFOPA
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- ビジネス
The International Fibrodysplasia Ossificans Progressiva (FOP) Association (IFOPA) serves families living with the ultra-rare genetic disease fibrodysplasia ossificans progressiva, as well as researchers and health care providers studying and treating this disease. The IFOPA is a US-based nonprofit organization whose mission is to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. You can find us online at ifopa.org.
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Insights on Access from the Rare Disease Community
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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 transportation to and from their jobs.
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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!
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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 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 -
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 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 -
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.