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
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
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
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 a July 2025 update on the research grant funding award to Dr. Isabelle Richard, PhD (Principal Investigator, Head of the Progressive Muscular Dystrophies Laboratory at Genethon), in collaboration with Dr Sonia Albini and Dr Edoardo Malfatti. Team Titin has funded $50,000 over two years to support the project, “Generation and characterization of skeletal … Read more
Advancing Research and Care in the Congenital Muscular Dystrophies (CMD), Nemaline Myopathy, and Titinopathy – Join Us at the 2025 SciFam Conference (SciFam.info) April 15, 2025: Cure CMD, A Foundation Building Strength, and Team Titin are thrilled to announce the return of the highly-anticipated 2025 Scientific & Family (SciFam) Conference, taking place August 1–5, 2025 … Read more