Developing a Support System

Hearing your child has an incurable disease is overwhelming. It causes grief and turmoil not just for affected families but also for those who know and love them. Friends, extended family and employers want to help but often don’t know how to reach out. This can deepen a family’s feeling of isolation.

B Brave’s library of resources helps supporters step in and offer empathy, emotional and tangible support for families struggling with rare and fatal diseases.

Support Tools:

Examples of What to Say

Providing Practical Support

How to be a Life Quarterback

Supporting a family that’s caring for a critically ill child can feel daunting, but sometimes it’s as easy and just being there. This video shows how one family gave and received support during their difficult journey.

Brene Brown does not endorse or work with the B Brave Foundation in any way.

Empathy vs. Sympathy

Author and professor Brené Brown has spent her career studying courage, vulnerability, shame and empathy. In this quick video, she explains the powerful difference between being empathetic and sympathetic, and why empathy is so much more difficult and helpful.

For many more guides addressing a range of related issues, visit our partner Courageous Parents Network.

Support B Brave

Help create and sustain support systems through a donation to B Brave Foundation. Your financial support allows us to truly support children and families facing incurable neurological disorders.