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
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
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
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