Updates (continued) Active Research directions and accomplishments Natural History Study A pilot natural history study brought 8 FSASD families to the We are “signing a National Institutes of Health in Bethesda, Maryland. Each of contract with the patients was under age 10; the goal of the study is to ourselves as learn more about the symptoms and biochemistry of FSASD scientists” to via an extensive series of laboratory and clinical tests. accelerate therapies. At the October Consortium meeting, Dr Lynn Wolfe shared -Dr Walkley, speaking of the that “we have so much data right now, we are in the process FSASD Consortium of analyzing everything that we have.” The families will be contacted prior to data publication. Thank you to the STAR families that participated in this important study! NOVEMBER 2023 PG 5