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
Team Titin is thrilled to announce a new partnership with Citizen Health! Citizen Health is a platform designed specifically for individuals managing rare and complex conditions like TTN (titin) – related muscle and heart disorders. Their mission is simple: to empower patients to drive their care and research through their own health data and accelerate … 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
Dr. Sarkozy and Prof. Baranello’s project update November 2024 [Stuttgart, Pine Brook, November 8, 2024] – ZNM – Zusammen Stark! e.V., in collaboration with Team Titin, is pleased to share the encouraging one-year results of the TREATIN project (Trial REAdiness for tiTIN-related centronuclear myopathies). Led by Dr Anna Sarkozy and Prof Giovanni Baranello from Great … Read more
April 2, 2024 by Holger Fischer and Sarah Foye ZNM – Zusammen Stark! e.V., Team Titin and the Foye Family have joined forces to better understand muscle diseases caused by changes in the TTN gene, which are called titinopathies. A joint grant of 50,000 Euros has been awarded to Dr Anna Sarkozy, MD, PhD and … Read more
As people focus on wellness in the New Year please enjoy this story about how one child with titinopathy found wellness and happiness doing adaptive fencing.
What is a Titin Myopathy? Terminology: “Titin Myopathy” versus “Titinopathy” How severe are Titin Myopathies?
What is Titin? Titin is a very large protein. In fact, it is the largest protein known to exist in the human body. The titin protein is located in each of the individual muscle cells within the muscles that move our bodies. In muscle cells, titin is part of the sarcomere, which is responsible for … Read more