We are pleased to announce continued funding of research led by genetic counselor and researcher Jennifer Roggenbuck, MS, CGC at Ohio State University focused on better understanding autosomal dominant titinopathies.
In 2025, Team Titin continued to grow, connect, and create change for people living with, caring for, and researching titin (TTN)–related muscle and heart conditions. Guided by our four mission pillars—Connection, Advocacy, Care, and Research—we made meaningful progress together. None of this would be possible without our families, donors, partners, clinicians, and researchers who believe … Read more
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 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
Did You Know? Approximately half of all patients diagnosed with cardiomyopathy in the U.S. have some type of genetic cause, while only about one percent of cardiomyopathy patients get genetic testing for their cardiomyopathy. Truncating variants in the TTN (titin) gene are the most common cause of inherited cardiomyopathy. The Genetic Cardiomyopathy Awareness Campaign was … Read more
Variants in the Titin gene are known to cause some heart problems in some people. If you are wondering where to get a good heart evaluation and treatment here is a great resource available for you. The Children’s Cardiomyopathy Foundation has recognized medical centers with expertise in pediatric cardiomyopathy. A designated CCF-accredited center of care provides … Read more