Podcast

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 importance of connecting with local first responders and preparing for an emergency. 

Kathy Ford is a 39-year-old resident of South Jersey who has been employed as a local emergency dispatcher. As a person living with a rare disease called Fibrodysplasia Ossificans Progressiva, she understands the importance of being prepared as best as possible for emergencies. 

Kerri Engebrecht is Executive Director of Adrenal Insufficiency United and Tennessee's Community Engagement Ambassador for NORD's Rare Action Network. She is mom to a son with Addison's Disease, her father has Frontotemporal Dementia and she advocates for all with rare disease and their caregivers.

Blog Post

Click here to hear from FOP community member, Trichele Reece as we explore why this connection is so important and how both caregivers and those they support can nurture a healthy, balanced, and safe relationship. 

Community Panel

Listen in as FOP community members Amie Darnell-Specht (North Carolina), Paulina Gutierrez (California) and Emma Albee (Maine) as they share tips, insights and lessons learned regarding safety situations in the home and on the go. 

Professional Conversation 

Watch along as IFOPA Family and Provider Support Coordinator, Melissa Davis, discusses the ins and outs of hiring and working with paid caregivers with Illene, a professional caregiver and caregiver trainer who runs the Instagram account @caregiverchroniclespnw

Resource Webinar 

Watch along as IFOPA Family and Provider Support Coordinator, Melissa Davis and Lindsey Butkus, MS, OTRL, ECHM, talk about home safety, home modifications, aging in place, and things you can do in your home to reduce fall risks.

Home Safety Checklist 

We have created this handout highlighting the key takeaways from our various conversations with community members and experts on this important topic. Please note these are general safety guidelines only and do not replace specific recommendations from your own health care provider.