Skip to main content
Webinar Recordings (2020)
Gene Therapy , presented by Barry Byrne, MD, PhD, Christy Pacak, PhD, W. Todd Cade, Pt, PhD, 15-Oct-2020
Assessment of Cardiac Function in Barth syndrome , presented by Dr. Carolyn Taylor, Medical University of South Carolina, 19-Aug-2020
2020 Scientific and Medical Symposium Presentations and Abstracts , 23-24-Jul-2020
Cardiac Aspects of Barth Syndrome: Electrophysiology , presented by Dr. Lanier Jackson and Dr. Carolyn Taylor, Medical University of South Carolina, 16-Jun-2020
Potential Role of Entresto (sacubitril-valsartan) in Barth Syndrome Cardiac Management , presented by Dr. John Jefferies, University of Tennessee Health Sciences Center, 19-Feb-2020
Recordings and Written Summaries
(2021)
(2020)
Ask the Doctor , with Richard Kelley, MD, PhD Medical Genetics, 13-Nov-2020
How to Advocate for Yourself in an Ableist World , with Brett Smith, 6-Nov-2020
Recognizing Fatigue and Conserving Energy in Barth Syndrome , with Cristy Balcells, RN, MSN 30-Oct-2020
The Perspective of Men with Barth Syndrome: Relationship Building, Family Planning, and Reproductive Decision-Making , with Jason Shandler, Boston University School of Medicine, 23-Oct-2020
Metabolic Management of Barth Syndrome , with Richard Kelley, MD, PhD, Medical Genetics, 9-Oct-2020
Life Hacks: Navigating Social Security with Brett Smith, 2-Oct-2020
Advocacy in Action TAZPOWER Clinical Trial with Hilary Vernon, MD, TAZPOWER Clinical Trial PI, 25-Sep-2020
Advocacy in Action with Walker Burger TAZPOWER clinical trial participant and James Valentine BSF Regulatory Counsel, 18-Sep-2020
Barth Syndrome Community Voice Report with Maria Picone, CEO, Founder TREND Community, 28-Aug-2020
Barth Syndrome Carrier Related Issues , with Rebecca McClellan, MGC, CGC, Genetic Counselor, Center for Inherited Heart Disease, Johns Hopkins Medicine, 21-Aug-2020
Primer in Barth Syndrome Metabolism , with Richard Kelley, MD, PhD, Medical Genetics, 14-Aug-2020
Etiology of Eating Orality Disorder in Barth Syndrome , with Florence Mannes, Speech Therapist, Medicine Sorbonne University, 7-Aug-2020
Back to School Beyond the Backpack : COVID-19 Concerns when weighing the decision about returning to school with B.J. Develle, LCSW 31-Jul-2020
Gene Replacement Therapy in the Barth syndrome Knockout Mouse with Dr. Suya Wang and Dr. Bill Pu from Boston Children's Hospital, Harvard Medical School, 26-Jun-2020, Written Summary
Monolysocardiolipin: Cardiolipin (MLCL:CL) assay, and its diagnostic utility and research potential for Barth syndrome with Dr. Fred Vaz from UMC Amsterdam, 19-Jun-2020, Written Summary
Strength, stamina and fatigue in Barth syndrome , with Brittany DeCroes Hornby, PT, DPT, PCS from the Department of Physical Therapy, Kennedy Krieger Institute, 5-Jun-2020, Written Summary
Webinar Recordings (2019)