On December 4, 2019, the Center for Disease Control and Prevention held their first meeting of the Acute Flaccid Myelitis Task Force. As a result of our advocacy in Washington DC, three parents were invited to present their personal journeys with AFM. It was such an honor to be invited to present--and we were so grateful for the opportunity to share our stories on behalf of all the children with AFM. Each parent shared their personal stories for roughly ten minutes.
The Task Force is made up of the experts in the field who are diagnosing and treating AFM and doing extremely important work--as well as the experts within CDC, many of whom have not ever seen a case of AFM, since they primarily work with the data. Each parent highlighted different areas within our presentations and effectively setting the tone for the meeting. Afterwards, many of the members of the Task Force came to thank us and were still visibly moved by our words--especially by Robin Robert’s. Her story of losing Carter is especially moving and powerful. Robin’s poise and commitment to fighting for Carter, even though he’s gone, is a testament to her strength.
We also had the opportunity to sit down with a TIME reporter for a little over an hour and shared more about our experiences with AFM. Before the Task Force meeting, we had breakfast with Dr. Nancy Messonnier (Director of the National Center for Immunization and Respiratory Diseases) and a dozen other CDC experts and shared some of our concerns regarding the handling of AFM (primarily, the issues with reporting and physician/public education.)
We left feeling positive and encouraged about the work the CDC is doing for AFM and excited about our future involvement. They were right with us--we all agreed that there are major issues with the data CDC receives from the states and that educating the general public as well of physicians is critical before we hit another outbreak in 2020. We look forward to following the good work the AFM Task Force is doing to educate physicians, identify causes and effective treatment and find potential prevention methods.
