To illustrate the power of social media to fill gaps in knowledge and care in the setting of emerging diseases, such as acute flaccid myelitis (AFM). 

Since neurologists in California first raised the alarm about a surge in AFM affecting young children in 2012, several hundred children have been affected in the United States. Given a sluggish response from the CDC, lack of training of medical personnel, and delays in scientific publications, to guide parents of children affected by AFM, one parent created a private Facebook Group in 2013. This group currently includes over 500 parents.

In August 2017, with permission from the group moderator, members were invited to participate in an anonymous survey (). The survey was closed after one month. Descriptive statistics were applied to quantitative responses, and free-text responses were analyzed using a grounded theory approach.

One hundred parents provided responses about their child. Children's clinical features matched those of the largest published case series (e.g. walking impairment in 79.5%, IVIg treatment in 77%; 27% tested positive for EV-D68) but interestingly, 31% reported hypertension in the acute setting, a manifestation not reported in the AFM literature. Among challenges, parents cited delays in diagnosis, economic and familial impact of protracted hospitalizations, uncertainty about AFM’s cause or prognosis, and dynamic nature of needs in growing children (limb length discrepancy, scoliosis, social/emotional). Factors contributing to the group’s critical role included not only the expected social support, but also dissemination of successful rehabilitation approaches and technologies, sharing networks of expert clinicians, and motivation from witnessing gradual improvements in some children years after the acute event.