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
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
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
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
Dr. Sarkozy and Prof. Baranello’s project update November 2024 [Stuttgart, Pine Brook, November 8, 2024] – ZNM – Zusammen Stark! e.V., in collaboration with Team Titin, is pleased to share the encouraging one-year results of the TREATIN project (Trial REAdiness for tiTIN-related centronuclear myopathies). Led by Dr Anna Sarkozy and Prof Giovanni Baranello from Great … Read more
This is a personal story from Johnny Faver, a member of the titin community who lives with a neuromuscular disorder that results from a disease-causing change in the TTN gene called Limb Girdle Muscular Dystrophy type 2J/R10 (LGMD2J/R10). As we celebrate the 10th annual LGMD awareness day, September 30th, the patient community is reaching a … 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