Navigating Life with LVNC

Living with LVNC isn’t just about navigating heart scans and medications — it’s about navigating fear, confusion, and often, isolation. For many, receiving a diagnosis comes with more questions than answers: What does this mean for my future? Can I exercise? Should my family get tested? We believe no one should face those questions alone. That’s why we’re committed to providing thoughtful, digestible information that honors both the science and the personal experience of LVNC — resources that clarify without overwhelming, and that respect the emotional weight behind every diagnosis.

At Nexus Heart Foundation, we strive to connect the dots between medical insight and lived experience. Through interviews with patients and caregivers, collaborations with specialists, and clear, accessible education, we aim to give individuals and families the confidence to ask questions, seek answers, and advocate for their care. Whether someone is newly diagnosed or has lived with LVNC for years, we want them to feel informed, seen, and supported — not just by clinicians, but by a growing community that truly understands the complexity of this condition.

Find a Specialist

Getting connected to the right cardiologist can make all the difference. Here are nationally recognized centers and specialists with experience in diagnosing and managing Left Ventricular Noncompaction Cardiomyopathy (LVNC):

• Boston Children’s Hospital (MA) – Advanced cardiac MRI & pediatric LVNC care

• Texas Children’s Hospital (TX) – Genetic testing and pediatric cardiomyopathy unit

• Mayo Clinic Cardiomyopathy Clinic (MN) – Adult cardiomyopathy specialists

• Cincinnati Children’s Heart Institute (OH) – Family screening and long-term care

• Children's Hospital of Philadelphia (CHOP) – Electrophysiology & LVNC research

• Stanford Children’s Health (CA) – Fetal cardiology and personalized care plans

• Columbia University Medical Center (NY) – Adult and pediatric transitions

Not near a major hospital? You can still request a tele-health referral or get a second opinion from these centers.

Partner Organizations

Our work is made possible by standing alongside other leaders in the cardiomyopathy community. We provide these organizations with ongoing support, funding, and education:

• Children’s Cardiomyopathy Foundation (CCF)

• Cardiomyopathy UK

• Heart Failure Society of America (HFSA)

• American Heart Association – Cardiomyopathy Resources

We donate proceeds and raise awareness in collaboration with these groups, ensuring that every action we take creates a larger ripple of care.