Living with a TTN-related muscle or heart condition can mean managing a lot at once: medical records, specialist appointments, medications, test results, symptoms, insurance questions, school or disability paperwork, and an ever-growing list of things to remember. Team Titin partnered with Citizen Health to help our community bring medical information together in one place and … Read more
The titin community understands that rare disease affects more than an individual. It touches families, sometimes across generations, and can shape lives in profound ways. This summer, our community experienced the loss of Douglas “Doug” Huss, a beloved husband, father, grandfather, family member, and friend who lived with Hereditary Myopathy with Early Respiratory Failure (HMERF). … Read more
With the generous support of our community, Team Titin awarded $50,000 over two years to Isabelle Richard, PhD, Principal Investigator and Head of the Progressive Muscular Dystrophies Laboratory at Genethon. Dr. Richard conducted this work in collaboration with Sonia Albini, PhD, and Edoardo Malfatti, MD, PhD. Their project, “Generation and characterization of skeletal muscle organoids … Read more
September is Limb-Girdle Muscular Dystrophy (LGMD) Awareness Month, and Team Titin is proud to partner with the LGMD Awareness Foundation to promote the inaugural Worldwide Girdie 5K Walk-Run-Roll for LGMD Awareness. Team Titin serves individuals and families affected by TTN-related muscle and heart disorders. While many people associate TTN with congenital myopathies or cardiomyopathy, changes … Read more
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 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