November is National Family Caregivers month! We look forward to sharing resources throughout the month to bring insights from caregivers and resources for support to a critical subgroup of the FOP community.
Artificial intelligence translation will be provided in the following languages:
Arabic, Bengali, Chinese (Simplified), Chinese (Traditional), Czech, Dutch, French (FR), French (CA), German, Hebrew, Hindi, Indonesian (Bahasa), Italian, Japanese, Korean, Polish, Portuguese (PT), Portuguese (BR), Romanian, Russian, Spanish (ES) + Spanish (MX), Swedish, Tagalog, Tamil, Thai, Vietnamese.
*Translation services and the Zoom video application can not be accessed at the same time on a single mobile device. If you're using a mobile device and want to access translation and see fellow attendees during a Zoom meeting, you will need a second mobile device or a computer to open translation services. With two mobile devices or a mobile device and a computer, you can participate in the Zoom meeting on one device and access written and audio translation on the other.
November Caregiver Insights Panel Discussions
We'll be holding two community panel discussions the week of November 14th. We hope you'll join us live to hear our panelists' stories by registering using the links for the two sessions below. If you are unable to join us live for the panel discussion we'll be sharing an audio recording of our conversations as podcasts shortly following the live discussion.
We've all heard the saying it takes a village...hear from members of the FOP community who will be sharing 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'll 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
Being an empowered caregiver creates a supportive space for the person providing care and the individual with FOP. Learn 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
Made Possible with Support from:
NORD Rare Caregiver Respite Program: The NORD Respite Program, a first-of-its-kind assistance
program is designed for caregivers (parent, spouse, family member, or significant other) of a child or adult
diagnosed with a rare disorder. NORD understands that caring for a loved one is a generous
gift that demands significant amounts of time, attention, patience and dedication.
- Angel Aid Raregivers Emotional Journey Map: This Raregivers™ Emotional Journey Map is for caregivers, patients, the network of professionals and organizations involved in supporting rare families. Here you will find information about holistic, person-centered pathways and resources to support and sustain Raregivers™ over what can be a long, life-altering journey through the inevitable cycles of hope and grief.