LGMD Awareness Day: an advocates personal journey

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

The Silvey Family Foundation and Team Titin Join Forces to Fund Titin Research

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

ZNM – Zusammen Stark! e.V. and Team Titin fund study of titinopathy

Alliance to fund titin research

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