#LGMDawareness

Team Titin Joins the Inaugural Worldwide Girdie 5K Walk-Run-Roll for LGMD Awareness

by
Image of the LGMD Girdie mascot with the Team Titin Logo for the 2026 5K

September is Limb-Girdle Muscular Dystrophy (LGMD) Awareness Month, and Team Titin is proud to partner with the LGMD Awareness Foundation to promote the inaugural Worldwide Girdie 5K Walk-Run-Roll for LGMD Awareness. Team Titin serves individuals and families affected by TTN-related muscle and heart disorders. While many people associate TTN with congenital myopathies or cardiomyopathy, changes … Read more

Team Titin in 2025: A Year of Impact – and Our Vision for 2026

by
Team Titin logo 2025 accomplishments & priorities for 2026 on a sparkling background

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

LGMD Awareness Day: an advocates personal journey

by

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

LGMD Awareness Day 2022

by

What does LGMD Awareness Day mean to me? This year’s LGMD awareness day is an exciting and very important event! I’d like to take some time to express just how crucial this day of awareness is to each one us living with LGMD. September 30th is not just a date on the calendar anymore. It … Read more