At Team Titin, we know that living with a TTN-related heart condition – or carrying a TTN variant that may increase heart-related risk can bring many questions. That is why we were grateful to host our educational webinar, “New Year, New You: Heart-Healthy Lifestyle Tools for People with Titin (TTN)-Related Heart Conditions,” on January 28, 2026.
This webinar was created to support individuals and families affected by TTN-related heart conditions, with a special focus on practical, understandable information that people can use in partnership with their healthcare teams. The program reflected two important Team Titin pillars: Care, by sharing actionable information to help families better understand heart health, and Research, by highlighting current knowledge and ongoing scientific efforts related to titin and cardiomyopathy.
We were honored to welcome two outstanding speakers:
Professor Diane Fatkin, MD, a molecular cardiologist and internationally recognized expert in inherited heart diseases, with a particular focus on familial dilated cardiomyopathy (DCM) and atrial fibrillation, including conditions caused by changes in the TTN gene.
Dr. Renee Johnson, PhD, a clinical research coordinator and genetic counselor specializing in dilated cardiomyopathy and atrial fibrillation. Her work focuses on understanding the genetic causes of these conditions and supporting individuals and families through research participation and clinical care.
Together, they offered a thoughtful and practical overview of TTN-related heart health, including what titin is, how truncating variants in TTN (TTNtv) may affect the heart, and what researchers currently understand about risk, disease onset, and factors that may influence outcomes.
The webinar covered a range of topics important to the titin community, including:
- what titin is and the role it plays in the body
- TTNtv-related muscle and heart disorders, with a focus on dilated cardiomyopathy
- highlights from recent research, including the publication “Titin-related familial dilated cardiomyopathy: factors associated with disease onset”
- lifestyle and environmental factors that may increase or decrease cardiomyopathy risk
- how to think about TTNtv and DCM risk
- alcohol use and what is currently understood about its potential impact for TTNtv carriers
- exercise considerations for people who carry a genetic variant or live with TTN-related cardiomyopathy
One of the most valuable aspects of this webinar was its emphasis on empowerment. Rather than focusing only on risk, the discussion helped families better understand where evidence is growing, where questions remain, and how thoughtful lifestyle decisions and appropriate medical care may play a role in supporting heart health over time.
This kind of educational outreach is central to Team Titin’s mission. By sharing research in plain language and making expert knowledge more accessible, we hope to help affected individuals and families feel more informed, more connected, and better equipped to advocate for their care.
Watch the Webinar
If you were unable to attend live, or would like to revisit the information, you can watch the full webinar recording here:
Full playlist: “New Year, New You” Webinar Playlist
You can also watch the topic-specific clips below:
- What is titin and what does it do?
- TTNtv-related muscle and heart disorders with a focus on dilated cardiomyopathy
- Highlights from recent research in titin and heart health
- Risk factors that may promote cardiomyopathy
- Factors that might protect against cardiomyopathy
- TTNtv and DCM risk: incidence of cardiomyopathy graph explained
- Alcohol and TTNtv carriers
- Exercise: Is exercise good or bad for my heart if I have a genetic variant?
We are deeply thankful to Professor Fatkin and Dr. Johnson for sharing their time, expertise, and commitment to the titin community.At Team Titin, we remain committed to advancing Care and Research by connecting families with trusted information and helping bring the latest scientific insights to the people who need them most.