Grieving as a Community: Patient Advocacy Summit Session

Grieving as a Community was part of the Caregivers Track at the Patient Advocacy Summit in San Diego, California September 12-14, 2022.

Becky Benson, Jessica Fein, and Julia Vitarello joined Megan Fox, to discuss how a rare disease community handles loss among its members. Moderator Megan Fox led the discussion, including supporting the family experiencing the loss, and the other members of the community.

When someone in your same disease community passes on, how do you lead support for that family and for all your members?

Moderator: Megan Fox, CCLS, Program Director, Me Fine Foundation

Panelists:
• Becky Benson, Family Services Manager, Certified Peer Support Specialist, NTSAD, Child Neurology Foundation
• Jessica Fein, Board Member, Mitoaction; Rare Disease Writer and Advocate
• Julia Vitarello, Founder and CEO, Mila’s Miracle Foundation