Recent Recordings

Previous Webinar Recordings

(2024)

• The Impact of Raising Children with Barth Syndrome on Parental Health-Related Quality of Life and Family Functioning with YoonJeong Lim, PhD OTR/S 31-May-2024 
• Essential Community Briefing: 2024 FDA Advisory Committee with Kate McCurdy, Emily Milligan, Reenie McCarthy, Katie Landes and James Valentine. 23-May-2024
• Research Update:  Anomalous peroxidase activity of cytochrome c is the primary pathogenic target in Barth syndrome with Miriam Greenberg, PhD; Valerian Kagan, PhD, DSC and Hulya Bayir, MD. 26-Apr-2024
• Research Update: Exercise and Viral Vector Therapy in Mice with Barth Syndrome with Todd Cade, PT, PhD and Christy Pacak, PhD. 22-Mar-2024
• Avoidant/restrictive food intake disorder (ARFID):  A discussion about this relatively new feeding disorder with Feeding Disorder Specialist, Virginia Covington, LCSW. 23-Feb-2024
• Feed The Baby:  An inclusive approach of feeding special needs infants and toddlers with Victoria Facelli, IBCLC. 26-Jan-2024

(2023)

• Barth Syndrome Cardiomyopathies: Models and Disease Pathophysiology, with Adriana Passadouro
• Insights from Barth syndrome patient registry data:  Diagnostic odyssey, clinical burden, and natural history of Barth syndrome, with Melissa Huang, PhD. 29-Sep-2023
• Preparing for Your Legislative Meeting with Kevin Freiert, CEO, Salem Oaks. 1-Sep-2023
• Advocacy in Action:  Why you Matter, with Katie Landes, KPM Group DC, Jake Chebowski, Sen Braun (R-IN), Jackie Weinrich, US Representative Matsui (D-CA-07). 25-Aug-2023
• Special Meeting on Elamipretide, with Todd Cade, PT, PhD; Jamie Dubuque; Amy Goldstein, MD;  Reenie McCarthy, JD; Hilary Vernon, MD. PhD; Jacob Wilson. 17-Aug-2023
• Roundtable:  Neutropenia Educational Series (Medications), with David Frame PharmD, 28-Jul-2023
• Research Roundtable: Phenotypic Characterization of the Barth Syndrome Mouse Model, with Michelle Tomczewski, 30-Jun-2023
• Town Hall: Pathways to a Gene Therapy for Barth Syndrome, with Barry Byrne, MD, Todd Cade, PT, PhD, William Pu, MD, Hilary Vernon, MD, PhD, 14-Jun-2023
• Roundtable:  Neurological and Psychological Aspects of Barth Syndrome, with Melissa Olivar-Villanueva, BS, Mindong Ren, PhD, and Colin Phoon, MPhil, MD, 26 -May-2023
• Roundtable:  Neutropenia Educational Series (Newborns, Infants, & Toddlers and Preschoolers) Part II, with Kelly Walkovich, MD and Jolan Walter, MD, PhD, 28-Apr-2023
• Roundtable:  What is "Barth Tired" - a mixed methods study, with  Virgina Chu, PhD, OTR/L and Stacey Reynolds, PhD, OTR/L, FAOTA, 24-Feb-2023
• Roundtable:  Enteral and Parenteral Feeding (Highlighting the work of the Oley Foundation), with Lisa Metzger and Maisy Cyr, The Oley Foundation, 27-Jan-2023

(2022)

• Roundtable:  Neutropenia Educational Series (Adults), with Jennifer Blase, MD, PhD, Heidie Rothschild, DHSc, MHA, Eric Scott, PhD, Kelly Jo Walkovich, MD
• Roundtable: Neutropenia Educational Series (Newborns, Infants, & Toddlers), with Eszter Hars, PhD, Kayla McMaster, LMSW, Kelly Walkovich, MD
• Roundtable:  Neutropenia Educational Series (School Age Children) with James A. Connelly, MD and Tammy Loader
• Roundtable:  Neutropenia Educational Series (Tweens and Teens) with Liam Lakhia, Aarti Kamat, MD, Eric Scott, PhD, Kelly Walkovich, MD Written Summary
• Roundtable:  Back to School Considerations for the Barth Syndrome Student, with Julie Floyd, M.Ed., 14-Aug-2022
• Roundtable:  Becoming Your Best Advocate, with Christina Brundage, 24-Jun-2022
• Roundtable: International Appointments for the Barth Syndrome Clinic, with Courtney Dunlow, 27-May-2022
• Roundtable: Research Update, with Erik Lontok, 29-April-2022
• Roundtable: Straight Talk About Barth, with Rebecca McClellan, 22-April-2022
• Roundtable: Barth Syndrome Carrier Concerns, with Rebecca McClellan, 25-February-2022
• Roundtable: You CAN Ask That, with Barth Siblings, 28-January-2022

(2021)

• CARDIOMAN Clinical Trials Update with Colin Steward, PhD, Barney Reeves, PhD, Guido Pieles, MD, PhD 10-Nov-2021 Read a brief summary
• Gene Therapy in Barth Syndrome: A Community Roundtable, Barry Byrne, MD PhD, Todd Cade, PhD, Christy Pacak, PhD 19-Oct-2021
• Roundtable: A Conversation with Todd Cade, 24-Sept-2021 Read a brief summary
• Community Check-in, August 27, 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
• 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
• 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
• Gene Therapy, presented by Barry Byrne, MD, PhD, Christy Pacak, PhD, W. Todd Cade, Pt, PhD, 15-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
• Assessment of Cardiac Function in Barth syndrome, presented by Dr. Carolyn Taylor, Medical University of South Carolina, 19-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
• 2020 Scientific and Medical Symposium Presentations and Abstracts, 23-24-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
• Cardiac Aspects of Barth Syndrome: Electrophysiology, presented by Dr. Lanier Jackson and Dr. Carolyn Taylor, Medical University of South Carolina, 16-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
• 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 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