Webinar Recordings (2021)

• Barth Fatigue, presented by Stacey Reynolds, PhD, 18-June-2021
• COVID-19 Vaccine Antibody Response in Transplant Patients, presented by Brian Boyarsky, MD, PhD, 27-May-2021 Written Summary

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)

• Project Sunshine, with Erika Apupalo and Kyra Hu, 23-July-2021
• Extraordinary! A book for children with rare diseases, with Evren and Kara Ayik 25-June-2021
• COVID-19 Vaccine Experience, with Terry Jo Vetters, 8-Jan-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
• 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)

• Barth Syndrome Foundation 2019 Town Hall Meeting, highlighting our success to further the mission of BSF in education, advances in research, and finding a cure, 12-Jun-2019