Patient Advocacy

In the absence of standardized and well-defined treatment protocols, survivors are often left to manage their own recovery. Resources who can provide answers are scarce and urgently needed. As a patient advocate, Becky works with families impacted by encephalitis in a variety of ways. She has a large network of doctors across the U.S. (and even in some European countries and Australia).

Becky coaches on preparing for important doctor visits, refers patients using her network to find medical professionals familiar with encephalitis and provides guidance when a patient/family is hitting a dead end.

She is a frequent speaker on encephalitis in both medical and patient/caregiver forums. Becky’s book, Brain Wreck, was top rated in Amazon within its first 4 months of being published.

Networking with other survivors often provides a healing experience in meeting others who understand the frustrations of living with what is often an invisible illness. Having experienced the benefits of meeting fellow survivors herself, Becky hosts survivor meetings in the Dallas/Fort Worth area every few months. The purpose is to share coping mechanisms, meds that work, tests or treatments that help, vent a little if needed, share a funny story, etc. If you’d like to be on the email list to be notified of these meetings, please click here.