2021 – Eight manuscripts have been published from the July, 2020 SSADH International On-Line Conference in the Journal of Child Neurology.


2021 – An Additional $55,000 was awarded to Henry Lee, PhD & Alexander Rotenberg MD, PhD at Boston Children’s Hospital in July of 2021 to evaluate three critical aims (rate, age and location) for ERT using the mouse model. This is a critical step in the discovery process for understanding the viability of ERT for SSADH patients.


2021 – We were granted approval from the FDA to hold a Patient Focused Drug Development (PFDD) Meeting on July 8th 2022, in preparation for initiating an enzyme replacement trial for SSADH.


2021 – We have exceeded the recruiting requirements for the SSADH Natural History Study going on at Boston Children's Hospital in the United States, Heidelberg University Hospital in Germany and at the Hospital Saint Joan de Déu in Barcelona, Spain.


2021 – SSADH Association committed $12,000 to maintain a Backup SSADH Mice Colony at JEX Services to ensure the availability of SSADH Mice should something happen to the existing colony at Washington State University, preventing any lapse in research due to the lack of SSADH mice.


2021 – $50,000 was awarded to Jens Andersen, PhD at the University of Copenhagen, Denmark as a fellowship grant to evaluate the Molecular Pathological Mechanisms of CaMK2a in SSADH Deficiency under the guidance of Petrine Wellendorph, PhD, an international leader in the neuroscience community related to GHB/GABA research. 


2020 – Hosted Virtual SSADH Conference with 300 individual registrations representing 25 countries.


2020 - Created a SSADH Deficiency Investigators Consortium (SDIC) made up of medical professionals and interested parties who have committed to collaborate on SSADH research.


2020 - $100,000 was awarded to Phillip Pearl, MD & Alexander Rotenberg MD, PhD at Boston Children’s Hospital in May of 2020, to develop a SSADH mouse model to e used to test the prospect of Enzyme Replacement Therapy.


2020 – Rinaldo, Piero, M.D., Ph.D., Vice Chair Information Management, Department of Laboratory Medicine and Pathology, Mayo Clinic, MN., and Dr. Mike Gibson, Ph.D., FACMG have completed the  algorithm for detecting SSADH at birth from a drop of blood. This is a monumental step for SSADH and imperative to be considered for the Newborn Screen Panel.


2020 – Sarah Elsea, Ph.D., FACMG Professor, Dept. of Molecular and Human Genetics and Senior Director Biochemical Genetics at Baylor College of Medicine has documented the genomic
variants for SSADH and believes the disease incident rate is 1:330,000. 


2020 – We have nearly reached the recruiting requirements for the SSADH Natural History Study going on at Boston Children's Hospital in the United States, Heidelberg University Hospital in Germany and at the Hospital Saint Joan de Déu in Barcelona, Spain.


2020 – SSADH Association committed $12,000 to maintain a Backup SSADH Mice Colony at JEX Services to ensure the availability of SSADH Mice should something happen to the existing colony at Washington State University, preventing any lapse in research due to the lack of SSADH mice.