Skip to main content


Scientific, Medical & Family Conference

Family Sessions

July 20, 2018 - Clearwater Beach, FL

Living with Barth Syndrome

Translating science into medicine
 Matthew Toth, PhD, BSF Science Director

Problems with sleeping, what is normal, what problems exist, give strategies to help individuals; Global overview on general sensory issues; What can families do
Stacey Reynolds PhD, OTR/L, Virginia Commonwealth University, Richmond, VA

Summarized findings from the Barth registry interviews: Key points for moving forward
Anthony Aiudi, PharmD, Stealth Biotherapeutics, Newton, MA

Summary of nutrition in Barth syndrome
Nicole Clayton, Specialist Paediatric Eating Disorders Dietician, Bristol Royal Hospital for Children, Bristol, United Kingdom

What have we learned from our elders: Findings from the older men Barth study
Iyar Mazar, Doctoral Candidate, Boston College; Research Manager, Adelphi Values, Boston, MA

Discussions/Questions & Answers

Powered by Firespring