NIH RESEARCH CONTINUES Recently, STAR submitted an $80,000 payment for the NIH to continue its endeavors with the National Human Genome Research Institute. Our lab technician, Mary Hackbarth, will continue to work under the direction and guidance of Dr. William Gahl, Dr. Marjan Huizing and Dr. David Adams. We are grateful for the continued partnership with these esteemed doctors and researchers. Update on Salla disease-related research activities at NIH Report from Mary Hackbarth, Marjan Huizing Ph.D., and William Gahl M.D., Ph.D. May 20, 2020 NIH has been operating on maximum teleworking capabilities since mid-March. That means that while many researchers, including those who work in the Gahl lab at the National Human Genome Research Institute (NHGRI) at NIH, have been unable to go into the physical lab spaces and conduct new experiments, we have had time to analyze data from previous experiments, take online courses to better inform our research plans, and review the literature while organizing experiments to start up as soon as we are able. Also, thanks to the essential employees and dedicated veterinary and scientific staff at the NHGRI, both within the Gahl group and in our animal core facilities, our Salla mouse colony is being maintained. The Gahl lab plans to hold a virtual scientific workshop to discuss Salla research with members of the SASD Consortium and our collaborators around the world sometime this fall. Although members of the community will not be able to meet in person for the workshop as originally planned, we hope that this virtual meeting will allow many investigators to participate in the scientific discussion, perhaps at a time when lab work at NIH and around the world may be ramping back up to full steam. NIH hopes to schedule an in-person meeting with scientists and STAR families when it is safe to do so. 2