September 2025 | LMNA Cardiac Newsletter

Missed it? It was a great webinar. Watch the recording of our conversation with Dr. Samuel F. Sears, a leading cardiac psychologist at East Carolina University, on navigating the emotional challenges of heart failure—especially for those living with LMNA-related heart disease.

What you’ll learn

• Practical tools to cope with anxiety and identity changes

• Tips for talking with family about your diagnosis

• Research-backed strategies to improve emotional health

Watch the recording: https://www.lmnacardiac.org/webinar-dr-samuel-sears/

We’re excited about our upcoming LMNA Patient Meeting at Duke University in Durham, North Carolina — and preparations are taking further shape! The agenda is now online, registrations are going well, and we’d love to see as many of you there as possible.

This two-day program will be both social and informative, bringing together individuals and families affected by LMNA-related cardiac conditions, alongside leading clinicians and researchers.

Highlights include:

• LMNA Patient and Family Day with lectures, roundtables, and community gatherings (Nov 2)

• Special visit to BridgeBio Gene Therapy with a lab tour and Q&A session (Nov 3)

👉 Have a look at the agenda and sign up to join us for a great program!

Register here: https://www.lmnacardiac.org/us-in-person-patient-meeting-at-duke-university/

Questions? Contact us at info@lmnacardiac.org

We’re looking forward to our next virtual LMNA patient gathering on October 26, 2025, from 12:00–1:30 pm ET (6:00–7:30 pm CEST). Join us for a supportive, informal video group chat—connect with others, ask questions, and be part of our caring LMNA community.

Why join?

• Share experiences with people who understand

• Ask your burning questions in a relaxed setting

• Recharge your sense of community and support

Register now to be part of the connection!

Many people living with LMNA-related heart disease are still undiagnosed — and awareness can change that. We need your help to spread the word.

Here’s how you can make a difference:

• Share our flyer in your clinic, community, or online

• Connect patients, families, and clinicians with our network

• Boost awareness to drive research and support

📢 Every share helps us reach someone who needs support.

🔗 Get involved now

The LMNA-331 research project officially started on September 1st, in collaboration with Maastricht University’s CARIM, led by Dr. Rogier Veltrop and Prof. Leon Schurgers.

This multi-year PhD initiative will explore the molecular mechanisms of LMNA cardiomyopathy using advanced models such as LMNA-iPSC cardiac cells, fibroblasts, and 3D engineered heart tissues. The goal: to deepen understanding and help pave the way toward future treatments.

LMNAcardiac.org is proud to be an official partner, supporting transparency, open-access findings, and direct community involvement.

How you can contribute:

• Share your LMNA variant via our submission portal

• Donate blood to support the research effort

Every action, big or small, helps move this vital work forward.

🔗 Read more