In the second week in November, members of the Acute Flaccid Myelitis Association and other AFM families from across the country converged on Washington DC to advocate for children affected by AFM. Parents met with legislators and were able to share their concerns about AFM. They presented on the need to make AFM nationally notifiable, the importance of establishing a national treatment protocol, and the value of increased funding for AFM research. Important connections were made, and we look forward to continuing our advocacy and work in Washington as appropriations season draws near.
On November 13, 2018, the advocates met with Anne Schuchat, MD, the principal deputy director of the CDC. Parents were able to share their frustrations with CDC’s handling of AFM and gained insight into the work CDC is doing to learn more about AFM. This meeting set the groundwork for three of our parents presenting at the first AFM Task Force meeting in Atlanta. We are optimistic and encouraged that CDC is taking AFM seriously and will be prepared to address and prevent the impending outbreak in fall of 2020.
