IFOPA Resilient Living Update

The IFOPA's Resilient Living Program launches thanks to RARE Patient Impact Grant

The IFOPA’s Resilient Living Program has launched thanks to a RARE Patient Impact Grant from Global Genes. Based on the Turning Point facets of resiliency, this new program offers people with FOP, families and caregivers the tools to improve emotional health and coping skills and reduce anxiety and depression as they face the challenges of this disease.

Since receiving the grant at the beginning of 2019, the IFOPA has added a home for the Resilient Living Program online (be sure to bookmark it). This page contains resources such as:

Tips and articles on resilient living are also posted each week to the IFOPA’s social media. For a recap of the social media posts follow the Resilient Living Program Pinterest board.

In addition, the IFOPA’s Executive Director Michelle Davis and Family Services Manager Hope Newport completed train-the-trainer instruction through Turning Point and training has been completed for mentors in the FOP Connect Peer Mentor Program.

The IFOPA has also opened registration for the Resilient Living Workshop taking place before the Family Gathering in November. This one-day workshop is a special opportunity for members of the FOP community to strengthen their mental, emotional and social well-being.

More resources can be expected over the coming year.

  • This fall, there will be more chances for people in the FOP community to receive the full resiliency training.
  • A resiliency tips handout and fact sheets on some of the more complex science-based aspects of the program (nutrition, the autonomic nervous system, breathing and meditation) will be created.
  • A Resilient Living book/podcast club is under development as well.

The IFOPA is excited to empower individuals and families living with FOP with vital information and education on self-care and resiliency. Watch the website and social media for updates on this important program.

For further details, check out the Resilient Living Program or contact Hope Newport.

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