Sarah Foye, Team Titin 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
April 2, 2024 by Holger Fischer and Sarah Foye ZNM – Zusammen Stark! e.V., Team Titin and the Foye Family have joined forces to better understand muscle diseases caused by changes in the TTN gene, which are called titinopathies. A joint grant of 50,000 Euros has been awarded to Dr Anna Sarkozy, MD, PhD and … 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
Did You Know? Approximately half of all patients diagnosed with cardiomyopathy in the U.S. have some type of genetic cause, while only about one percent of cardiomyopathy patients get genetic testing for their cardiomyopathy. Truncating variants in the TTN (titin) gene are the most common cause of inherited cardiomyopathy. The Genetic Cardiomyopathy Awareness Campaign was … Read more
Journey to healing and becoming a life coach – coping with LGMD2J/R10 Wellness program starting Feb 1, 2023 by Amie Lee I’ll never forget the feeling of fear that washed over me when I received my diagnosis of Limb Girdle Muscular Dystrophy 2J. I decided knowledge was power, so I began searching anything I could … Read more
As people focus on wellness in the New Year please enjoy this story about how one child with titinopathy found wellness and happiness doing adaptive fencing.