Honoring Douglas Huss Through Support for HMERF Research

The titin community understands that rare disease affects more than an individual. It touches families, sometimes across generations, and can shape lives in profound ways. This summer, our community experienced the loss of Douglas “Doug” Huss, a beloved husband, father, grandfather, family member, and friend who lived with Hereditary Myopathy with Early Respiratory Failure (HMERF). … Read more

What Is Titinopathy? A Beginner-Friendly Guide to TTN-Related Muscle and Heart Conditions

If you or someone you love has been diagnosed with, or is being evaluated for, a health condition related to the TTN gene, you may be encountering unfamiliar terms such as titin myopathy, titin muscular dystrophy, titinopathy, TTN-related disorder, or TTN gene disorder. Learning that a genetic change may be affecting your muscles or heart … Read more