“…Between 2014 and the present, the Benchmarks Committee reviewed progress in each of the 4 benchmarks areas, noting remarkable discoveries across basic epilepsy research, highlighting the major gains in understanding the causes of epilepsy, but also noting many continued gaps in all areas. [9][10][11][12][13] We have experienced a cultural shift through which the voices of patients and advocates are not only acknowledged but included in the discussions of the AES, including with the Benchmarks Committee, through the work of Epilepsy Leadership Council members, whose working group and leadership provided input into the Benchmarks process (and whose commentary accompanies this one). To further invite community input into the Benchmarks, in 2020 the NINDS published a Request for Information and launched a crowdsourcing campaign using the ninds.ideascale.gov platform.…”