Thrive with your TPM1 Gene
Whether your result is new or you’ve lived with it for years, connect with others who share your gene and stay close to the latest research and clinical trials that could help you live a healthier life.
Join the TPM1 communityHave a different gene? Search here.
“When my result came back, I felt completely alone. Finding people who truly understood changed everything.”
Maria, 47
Living with the MYH7 cardiomyopathy gene
“My diagnosis explained my family history, and let me take action to protect my kids.”
Christy Johnson
Living with a DSP cardiomyopathy gene
“The community answered questions I didn’t even know how to ask. I finally feel in control.”
James, 34
Caregiver to father with TTN cardiomyopathy gene
Your TPM1 quick-start guide
You don’t need to figure everything out today. Here’s what matters now, and what can wait a few weeks.
What you can do today
Join the TPM1 email list. New TPM1 trials and findings are emerging quickly. Fill out the form below to receive updates about future research and clinical trial opportunities.
Connect With Others: You don’t have to process this alone. Join the TPM1 Cardiomyopathy Facebook community to ask questions, share experiences, and hear from others on the same path.
Learn Through Video: Watch our expert video on TPM1 and check out our recorded webinars with real patients, real doctors, and plain language.
Talk With Someone Who’s Been There. Not sure where to start? Email us with your questions at info@geneticcardiomyopathy.org.
Learn More:
Explore these trusted organizations for additional information and support:
- DCM Foundation: Learn more about dilated cardiomyopathy, inherited heart disease, patient education, and support resources.
- Foundation for Inherited Arrhythmias: Learn more about heart rhythm disorders, inherited arrhythmias, family screening, and patient support.
- HeartCharged: Learn more about inherited heart conditions through patient stories, education, advocacy, and support.
Building your care plan
Find a Specialist. Not all cardiologists specialize in cardiomyopathy or inherited heart conditions. In the coming weeks, connecting with a Cardiomyopathy Specialist can make a meaningful difference in how your care is guided.
Establish a Baseline. Your care team may recommend heart testing, such as an echocardiogram or EKG, to understand your current heart function and create a reference point for the future.
Consider Genetic Counseling. A genetic counselor can help you better understand your genetic testing result, what it means for your health, and how to approach conversations with family members who may want to be tested.
Support Your Heart Health. Your care team will work with you to focus on protective measures like blood pressure management. Small, consistent steps will give your heart the best opportunity to stay strong.
Take these resources with you:
Download and print the Doctor Discussion Guide to help you feel organized and confident as you navigate your diagnosis.
Understanding the TPM1 Gene
The “Force Generator” of the Heart
The TPM1 gene (Tropomyosin 1) provides instructions for making tropomyosin alpha-1 chain, a protein that helps control how heart muscle cells contract with each heartbeat. It works alongside other key proteins to help the heart produce strong, coordinated contractions and maintain efficient pumping.
What happens when TPM1 is not working properly?
When the TPM1 protein is not working as it should, the heart muscle may not contract or relax normally. Over time, this can affect how efficiently the heart pumps blood and places extra stress on the heart muscle.
Some people with TPM1 variants develop hypertrophic cardiomyopathy (HCM), where the heart muscle becomes thickened. In other cases, the gene can cause dilated cardiomyopathy (DCM) or restrictive cardiomyopathy (RCM), where the heart walls become thin or stiff. Because these conditions can overlap, some individuals may show mixed features of both thickening and stiffening. Abnormal heart rhythms (arrhythmias) can also occur, sometimes even before the heart muscle shows significant structural changes.
What this means for your care
Because TPM1-related cardiomyopathy can vary in how it presents and progresses, regular monitoring and specialized cardiac care are essential. Your care team will use these checkups to monitor changes in your heart muscle and determine if a protective ICD is appropriate for you.
Because TPM1 cardiomyopathy is genetic, your family members may also benefit from testing. Parents, siblings, and children each have a 50% chance of carrying the same variant. Click here for practical tips on talking with your family members about your genetic results.
You did not cause this. Genetic variations are a natural part of human biology. Knowing this information now gives you and your care team a powerful tool to protect your heart health and guide your long‑term care.
Why Specialized Care Matters
Because TPM1 variants are unique, your care should be too. While a general cardiologist is a great starting point, managing genetic cardiomyopathy usually requires a cardiomyopathy genetics specialist.
To find a cardiomyopathy specialist, please click here.
“In a community matched to your exact diagnosis, families get support that helps them thrive.”
Sharisse Jiminez
Genetic Counselor
“Connecting with families who share your diagnosis can provide support, understanding, and sense of community.”
Sharisse Jimenez-Cyrus
Genetic Counselor
Watch a 2-minute message from our Executive Director, Greg Ruf
Connection & Support for TPM1 Cardiomyopathy Patients
You are part of a supportive community.
“Finding the TPM1 result felt like finally getting the owner’s manual for my heart.”
If you would like to connect with others, you can join our private TPM1 Cardiomyopathy Facebook community to ask questions, share experiences, and hear from others walking a similar path.
Watch & Learn about TPM1 Cardiomyopathy
Real patients, real doctors, real stories. Watch when you’re ready.
Dr. Luisa Mestroni’s Sarcomeric Genes Expert Video | 15 min.
TPM1 Clinical Trials & Research
Progress in this field is steady and continually evolving. We currently know of more than 30 companies that are working on potential new cardiomyopathy therapies (mostly gene-specific), but many have not reached the clinical trial phase yet. We encourage you to visit our clinical trials and research page to view available opportunities that might be right for you.
Be sure to fill out the form below so that we can contact you when we know of any relevant trials or research opportunities. Staying connected means you remain part of the progress, even before specific clinical trials or research studies exist.
DES Webinars
BAG3 DCM Gene Therapy Clinical Trial Studies Webinar – 4.15.2026 | 61 min.
Affinia BAG3 DCM – UPBEAT Clinical Trial Webinar- 6.10.2026 | 1 hr 6 min.
Frequently asked questions about TPM1 Cardiomyopathy
What is the TPM1 gene?
The TPM1 gene helps make tropomyosin, a protein involved in controlling how heart muscle contracts. Certain disease-causing TPM1 variants can affect that process and contribute to cardiomyopathy. A genetic counselor can help explain what your specific result means.
What types of cardiomyopathy are linked to TPM1?
Disease-causing TPM1 variants are linked to hypertrophic cardiomyopathy (HCM), in which the heart muscle becomes thickened. Some variants are also linked to dilated cardiomyopathy (DCM), in which the heart becomes enlarged and pumps less effectively. Your diagnosis depends on your heart findings as well as your genetic result.
Does a TPM1 variant mean I will develop cardiomyopathy?
Not necessarily. A person with a disease-causing TPM1 variant may have no detectable heart changes when first tested, and findings can differ even within the same family. Also, finding a change in TPM1 does not automatically mean it causes disease. Ask a genetic counselor what your result mean and whether you need ongoing heart screening.
What symptoms should I tell my care team about?
Tell your care team about shortness of breath, chest discomfort, palpitations, dizziness, fainting, or a change in how much activity you can do. Unexplained fainting needs prompt medical evaluation. Keep recommended appointments even if you feel well, because heart changes may cause few symptoms at first.
Should my family members have genetic testing?
If your TPM1 result is a pathogenic or likely pathogenic variant, a genetic counselor can help identify relatives who may benefit from testing for the family’s variant and from heart screening. TPM1-related HCM generally follows an autosomal dominant inheritance pattern: each child of someone with the disease-causing variant has a 50% chance of inheriting it. Inheriting the variant does not predict exactly whether or when heart changes will develop.
What follow-up care might I need?
Your specialist may recommend an electrocardiogram (ECG), an echocardiogram, or heart rhythm monitoring. A cardiac MRI may help in some situations. Your diagnosis, symptoms, family history, and test results will guide how often you need follow-up and whether treatment is appropriate.
Where can I connect with others affected by TPM1 cardiomyopathy?
GCAC’s TPM1 support group offers a place for patients and families to share experiences and find support. Sign up via the form below.
Join the TPM1 community
Be the first to know about new research, clinical trials, and helpful resources for people and families affected by TPM1 variants.
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Have a different gene? Search here.
A Message of Hope
Many biopharma companies and researchers are working on advanced treatments for genetic cardiomyopathies. We anticipate new clinical trials and research opportunities in the near future. You found this community at the right moment. Welcome.