Team Titin Joins Global Heart Hub for Cardiomyopathy Awareness Month 2026
This June, Team Titin is proud to partner with Global Heart Hub, the international alliance of heart patient organizations, for Cardiomyopathy Awareness Month 2026. This year’s campaign theme is:
Think Cardiomyopathy: Know Your Heart History
Sometimes, the first clue to a heart condition is not a symptom – it is a story.
A parent who developed heart problems unexpectedly.
A relative who experienced unexplained chest pain, fainting, or irregular heart rhythms.
A family member who died suddenly at a young age.
A pattern of heart failure, cardiomyopathy, atrial fibrillation, pacemakers, ICDs, or heart transplants across generations.
These stories matter.
Cardiomyopathy is a disease of the heart muscle that can affect the heart’s ability to pump blood through the body and may also be associated with irregular heart rhythms. It can affect people of all ages, and many forms can be passed down genetically. Global Heart Hub’s campaign highlights that cardiomyopathy is often underdiagnosed, misdiagnosed, or diagnosed too late – and that paying attention to symptoms and family history can help people seek care earlier.
For the Team Titin community, this message is deeply important. Disease-causing changes in the TTN gene can be associated with a spectrum of muscle or heart conditions, including dilated cardiomyopathy, other forms of cardiomyopathy, atrial fibrillation, and irregular heart rhythms. For some families, a TTN-related heart condition may be the first sign that a genetic change is present. For others, a known TTN variant may help explain a pattern of heart or muscle disease that has affected multiple relatives.
That is why we are encouraging our community to pause this June and ask:
What do I know about my family’s heart history?
Why Family Heart History Matters
Many people do not think of heart disease as something that can run in families – or they may not know which details are important to share with a doctor. But family history can be a powerful tool.
Knowing whether relatives have had cardiomyopathy, heart failure, sudden cardiac death, atrial fibrillation, unexplained fainting, implanted cardiac devices, heart transplants or muscle weakness may help healthcare providers recognize inherited risk and consider whether additional evaluation or genetic testing is appropriate.
This campaign reminds us that the warning signs of cardiomyopathy may come from patterns across generations. Understanding those patterns can help people ask new questions, identify possible risks, and take action earlier.
Signs and Symptoms to Talk About With Your Doctor
Cardiomyopathy can look different from person to person. Some people have no symptoms, especially early on. Others may experience symptoms that affect daily life.
Symptoms can include:
- Irregular or rapid heartbeat, palpitations, or arrhythmias
- Fatigue
- Shortness of breath or difficulty breathing
- Dizziness or fainting
- Chest heaviness or chest pain
- Swelling in the legs, ankles, or feet
- Bloating or swelling in the stomach area
These symptoms do not always mean someone has cardiomyopathy, but they are important to discuss with a healthcare provider – especially when there is a personal or family history of heart disease.
A Message from Team Titin
“Team Titin is honored to partner with Global Heart Hub for Cardiomyopathy Awareness Month because this campaign speaks directly to what we hear from families every day: heart history matters, genetic answers matter, and no one should have to navigate this journey alone. For people and families affected by TTN-related conditions, understanding family patterns of heart problems can be an important step toward earlier diagnosis, better care, and connection to the right resources. Our hope is that this campaign encourages people to start conversations with their families, ask questions of their healthcare providers, and know that Team Titin is here to support them through connection, advocacy, care, and research.”
— Sarah Foye, President, Team Titin
What You Can Do This June
This campaign is not about fear. It is about awareness, conversation, and action.
Here are a few steps you can take:
Talk with your family. Ask relatives about heart conditions, rhythm problems, sudden deaths, heart failure, cardiomyopathy, pacemakers, ICDs, or heart transplants.
Write it down. A simple family heart history can be helpful to bring to medical appointments.
Speak with your doctor. Share symptoms and family history, even if you are not sure whether the details are connected.
Ask whether genetic testing or referral to a specialist may be appropriate. This may be especially important when symptoms appear in more than one family member.
Share the campaign. Your story or conversation may help someone else recognize a pattern in their own family.
Think Cardiomyopathy. Know Your Heart History.
