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
August 1- 4, 2025 • Philadelphia, PA Team Titin, together with our partners Cure CMD and A Foundation Building Strength for Nemaline Myopathy, proudly hosted the 2025 SciFam Conference – a four-day gathering for the congenital muscular dystrophy, nemaline myopathy, and titinopathy communities. More than 344 attendees – including affected individuals, families, caregivers, clinicians, researchers, … 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
Registration is now open for SciFam, a four-day, in-person event for stakeholders in congenital muscular dystrophy, nemaline myopathy, and titinopathy. 2025 SciFam will take place August 1-5 in Philadelphia USA and is hosted by Cure CMD, A Foundation Building Strength, and Team Titin. Learn more at SciFam.info.
At Team Titin, our mission is clear: supporting individuals and families affected by titin (TTN)-related muscle and heart disorders through connection, care, advocacy, and research. 2024 has been an incredible year of growth, achievements, and impactful initiatives that brought us closer to our goal of improving lives and advancing treatments. Here’s a recap of what … Read more