November 2025 | LMNA Cardiac Newsletter

The LMNA Cardiac Diseases Network hosted its first in-person U.S. patient meeting in Raleigh on November 2–3, bringing together LMNA patients, families, and researchers for a weekend of learning, connection, and collaboration.

The event featured outstanding presentations from leading clinicians and scientists, engaging discussions, and meaningful opportunities to connect face-to-face with others in the LMNA community. A highlight of the weekend was the lab tour, where participants got a behind-the-scenes look at LMNA research in action — from sample collection to scientific analysis.

The meeting fostered new connections, strengthened collaboration across the LMNA community, and inspired renewed commitment to advancing research and improving care.

Read more about the event

We’re thrilled to announce the kickoff of a new video-series hosted by Alfredo Hernandez—designed to bring fresh support, education, and insight to our LMNA community.

In this ongoing series we’ll feature conversations with patients, families, medical professionals and other key voices from the world of LMNA-related cardiac disease. These personal stories and expert interviews are aimed at strengthening our shared understanding and connection as a global community.

The first episode shares Alfredo’s own story, and future videos will include perspectives from fellow patients—including a planned interview with Kimberly Cox, a recent heart-transplant recipient. 

If you are part of our network and would like to share your experience, story or needs, please do reach out—Alfredo will contact interested participants for future episodes.

These videos are yet another way we can raise awareness, connect with one another, and keep driving research and support forward together.

Read more about the series

Our new LMNAcardiac.org Merchandise section is now live — a campaign that began with one team walking 4×50 km during the Nijmegen Four Days Marches to raise money for LMNA research.

That effort sparked something bigger. As LMNA community members saw the team’s T-shirts on social media, requests started coming in for their own LMNAcardiac.org shirts — and so the next campaign was born.

Behind this initiative is a simple but powerful idea: turning concern into action, making LMNA visible, and bringing hope closer. Each item helps raise awareness and supports ongoing LMNA research and advocacy.

Explore our merchandise

The LMNA Cardiac Diseases Network is hosting an upcoming information evening on preimplantation genetic testing (PGT) for individuals and families affected by LMNA-related cardiomyopathies. This session will offer clear and accessible insights into what PGT is, when it may be considered, and the practical, ethical, and emotional aspects involved.

Leading geneticists and cardiologists will explain the steps of the PGT process, how an LMNA variant can influence reproductive choices, and what couples should consider when thinking about starting a family. There will also be an opportunity for participants to ask questions directly to the experts.

📅 When: Thursday 20th of November / 8pm CET

💻 Online webinar: Zoom

We warmly invite anyone interested to join this session and learn more about how PGT can support informed family-planning decisions within the LMNA community.

Read more and register for the webinar

Hosted by the DCM Foundation and LMNA Cardiac Diseases Network, this webinar highlighted critical issues in cardiomyopathy care — including the under-utilisation of genetic testing and the need for enhanced patient support systems.

Key take-aways included:

• Fewer than 1% of cardiomyopathy patients receive appropriate genetic testing, despite nearly half of cases having a heritable component.

• Improved integration of genetic services into standard cardiology care is essential to closing the care gap for conditions like those caused by the LMNA gene.

• The importance of building robust support networks for patients and families — not only at the diagnostic stage, but throughout long-term management and research engagement.

• Practical guidance for patients, families and clinicians on how to navigate genetic testing pathways, interpret results, and translate them into meaningful care and research participation.

We thank all participants, speakers, and attendees for their engagement in this vital discussion. Together, we are strengthening the network, deepening awareness, and taking tangible steps toward better outcomes for the LMNA community.

Read more and watch the recording on our website