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
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
Team Titin and The Silvey Family Foundation are funding research to understand how harmful changes in the TTN gene affect muscle function in the heart and body. 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 … Read more
The titinopathies were featured in the May 2024 MDA Quest magazine. Here’s an excerpt from the article: “Can you tell us about titinopathies and the gene that causes them? We currently know of more than 10 different muscle disease types in the group of titinopathies, which can cause disorders both severe and mild, from prenatal … Read more
Team Titin is a nonprofit organization with the mission of serving those living with, caring for, or researching titin (TTN) related muscle and heart disorders. Team Titin is excited to announce our first research grant funding award to Dr. Isabelle Richard, PhD (Principal Investigator, Head of the Progressive Muscular Dystrophies Laboratory at Genethon), in collaboration … Read more
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