Heart-Healthy Lifestyle Tools for People with Titin (TTN) – Related Heart Conditions Please join Team Titin for a free educational webinar designed for individuals and families affected by TTN-related heart conditions or who carry variants in the TTN gene and may be at risk for heart health concerns. Date: January 28, 2026Time: 6:00–7:15 PM ETFormat: … Read more
This is a July 2025 update on the research grant funding award to Dr. Isabelle Richard, PhD (Principal Investigator, Head of the Progressive Muscular Dystrophies Laboratory at Genethon), in collaboration with Dr Sonia Albini and Dr Edoardo Malfatti. Team Titin has funded $50,000 over two years to support the project, “Generation and characterization of skeletal … Read more
This is an update as of June 2025 on the research project funded by Silvey Family Foundation and Team Titin. This research is being conducted by Jennifer Roggenbuck, MS, CGC, Professor of Neurology at The Ohio State University Wexner Medical Center, along with collaborators at The University of Arizona. “Harmful changes in the TTN gene … Read more
Team Titin and The Silvey Family Foundation are funding research to understand how harmful changes in the TTN gene affect muscle function in the heart and body. This research is being conducted by Jennifer Roggenbuck, MS, CGC, Professor of Neurology at The Ohio State University Wexner Medical Center, along with collaborators at The University of … Read more
What is a Titin Myopathy? Terminology: “Titin Myopathy” versus “Titinopathy” How severe are Titin Myopathies?