SCID National Quarterly Webinar

The Newborn Screening Translation Research Network (NBSTRN), in close partnership with the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs), hosts a National Severe Combined Immunodeficiency Disorder (SCID) Webinar every quarter. All are welcome to join. 

For more information about the SCID Quarterly Webinars and topic suggestions, please email Ruthanne Sheller at ruthanne.sheller@aphl.org.

The February 2019 webinar agenda can be found below:

• Immune Deficiency Foundation SCID Engagement. Alissa Huston, SCID Compass, Immune Deficiency Foundation (IDF)

• Overview of SCIC Survey Results. Amy Brower, PhD, NBSTRN

• Key Findings from the Primary Immune Deficiency Treatment Consortium (PIDTC) Meeting. Amy Brower, PhD, NBSTRN

• Adenosine Deaminase (ADA) Deficiency SCID Treatment Updates. Joseph Wiley, MD, F.A.A.P, Leadiant Biosciences

Presenter information:

• Alissa Hust is a Program Manager at the Immune Deficiency Foundation (IDF) in Towson, Maryland. She manages the HRSA-funded SCID Compass program. A Native of Cincinnati, Ohio she received her Bachelor of Science in Child and Family Studies from Ohio University and her Master of Public Health from George Washington University. Prior to coming to the IDF, she worked as a Certified Child Life Specialist at the Kennedy Krieger Institute, providing developmentally appropriate education and support to hospitalized and special needs children. 

• Dr. Amy Brower is a medical geneticist working on several projects at the American College of Medical Genetics and Genomics in Bethesda, MD as part of Eunice Kennedy Shriver National Institute of Child Health and Human Development’s (NICHD) Newborn Screening Translational Research Network (NBSTRN). Dr. Brower serves as the Associate Project Director for NBSTRN and works with a team that develops informatics platforms to collect, analyze, visualize and share longitudinal clinical and genomic research data.  The NBSTRN collaborates with national research projects working to discover new ways to detect and treat diseases affecting newborns and young children. Amy has a background in medical genetics, genomics, newborn screening, translational research, molecular diagnostics and bioinformatics.  She was a member of the Human Genome Project and developed molecular diagnostic and informatics platforms over a decade of work in the device industry.  Dr. Brower serves on several national and foundation advisory boards and was an inaugural member of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. Amy received her doctorate degree in Medical Genetics at the University of Nebraska Medical Center and has a son with Severe Combined Immune Deficiency.

• Dr. Joseph (Joe) Wiley is, currently, the Vice President of Medical Affairs, Drug Safety, and Pharmacovigilance, North America, for Leadiant Biosciences, Inc., Gaithersburg, MD. Leadiant Biosciences, Inc. is a research-based pharmaceutical company that dedicates considerable scientific and financial resources to the research, development, and distribution of novel and effective therapies to address patient needs with rare diseases and improve their quality of life. At Leadiant Dr. Wiley has served as in-house scientific and clinical expert for a number of Rare diseases that benefit from the development of Leadiant products. In particular, Dr. Wiley is an expert in Adenosine Deaminase Deficiency-Severe Combined Immune Deficiency (ADA-SCID) and has led the organizational strategy for implementation and Key Opinion Leader education of a new enzyme replacement therapy as well as the development of a Population Health Strategy for a post-approval Patient Registry in ADA-SCID.