Sarah Foye, Team Titin 
Guest post by Gg Woodward (Team Titin Volunteer) July is Disability Pride Month, and Team Titin is excited to share some disability pride with the titinopathy community! Disability Pride Month is celebrated in July to commemorate the passing of the Americans with Disabilities Act (ADA) in July of 1990, and was first celebrated on its … Read more
Living with a rare TTN-related condition can mean constantly explaining something that most people have never heard of before. For many families, those explanations happen in doctor’s offices, classrooms, therapy clinics, community settings, and even in everyday moments when people may stare or ask questions. Team Titin created Titinopathy Awareness Cards to help make those … Read more
Team Titin Joins Global Heart Hub for Cardiomyopathy Awareness Month 2026 This June, Team Titin is proud to partner with Global Heart Hub, the international alliance of heart patient organizations, for Cardiomyopathy Awareness Month 2026. This year’s campaign theme is: Think Cardiomyopathy: Know Your Heart History Sometimes, the first clue to a heart condition is … Read more
Team Titin is excited to share that we will be participating in two upcoming MDA Engage Community Education events in 2026: one in Hershey, Pennsylvania and one just outside Chicago, Illinois. These free, in-person events hosted by the Muscular Dystrophy Association bring together people living with neuromuscular disease, caregivers, clinicians, advocates, nonprofit organizations, and industry … Read more
Breathing weakness is an important topic for many people and families living with titinopathies. Changes in the TTN gene can cause a broad spectrum of muscle and heart disorders, and for some individuals, this can include weakness of the muscles used for breathing, coughing, and clearing secretions. Team Titin recently hosted the webinar “Overview of … Read more
At Team Titin, our mission is rooted in Connection, Advocacy, Care, and Research. We are excited to share a powerful new partnership that brings all four pillars together in a meaningful way. We are proud to partner with Citizen Health – a platform designed to support individuals and families living with rare and complex conditions … Read more
At Team Titin, we know that living with a TTN-related heart condition – or carrying a TTN variant that may increase heart-related risk can bring many questions. That is why we were grateful to host our educational webinar, “New Year, New You: Heart-Healthy Lifestyle Tools for People with Titin (TTN)-Related Heart Conditions,” on January 28, … Read more
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.
With the start of the New Year it’s time to consider our goals and mission. Read more for details. Team Titin, Inc.’s mission is to serve those living with, caring for, or researching titin (TTN) related muscle and heart disorders. To achieve this mission, we focus on four key pillars: Connection, Advocacy, Care, and Research. … Read more
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