August 2025 | LMNA Cardiac Newsletter

Join Dr. Samuel F. Sears, a leading cardiac psychologist from East Carolina University, for a powerful conversation on navigating the emotional challenges of heart failure. This session is especially valuable 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

📅 Format: Host-led Q&A on Zoom

🔗 Register now: https://www.lmnacardiac.org/upcoming-webinar-living-with-heart-failure

We’re excited to invite you to our upcoming in-person LMNA Patient Meeting, taking place November 2–3, 2025, at Duke University in Durham, North Carolina.

This two-day event will bring together individuals and families affected by LMNA-related cardiac conditions, as well as leading clinicians and researchers in the field. It’s a unique opportunity to connect, learn about the latest scientific developments, and support our growing LMNA cardiac community.

The program includes:

• LMNA Patient and Family Day with lectures, roundtables, and community gatherings (Nov 2)
• A special visit to BridgeBio Gene Therapy, including a lab tour and Q&A session (Nov 3)

Full agenda and location details are available now.
Spots are limited—register today!

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

Questions? Contact us at info@lmnacardiac.org

We’re delighted to announce the Dutch LMNA Patient & Gene Carrier Day, taking place Saturday, October 4, 2025, at Amsterdam UMC (AMC location). This in-person gathering will bring together Dutch patients, gene carriers, caregivers, and healthcare professionals for connection, shared insights, and community support.

Why Attend:

• Meet others affected by LMNA mutations
• Stay updated on the latest developments
• Strengthen our growing national network

For our international friends: there’s also an in-person LMNA meeting planned at Duke University (USA) this November.

Stay tuned for details on the program, speakers, and registration info!

👉 https://www.lmnacardiac.org/dutch-lmna-patient-gene-carrier-day/

Have you or someone you love been affected by an LMNA gene mutation? We need your help to spread the word. Though rare, LMNA‑related heart disease can have life-threatening impacts—and many patients remain undiagnosed.

🎯 How you can help:
• Download and share our flyer — in clinics, online, or with your network
• Grow the community — connect patients, families, and clinicians
• Support research — awareness drives progress

📢 Together, we can reach those who need support the most.
🔗 Get involved now

We’re excited to kick off the LMNA‑331 research project in partnership with Maastricht University’s CARIM, led by Dr. Rogier Veltrop and Prof. Leon Schurgers. This multi-year PhD initiative will use cutting-edge models—such as LMNA‑iPSC cardiac cells, fibroblasts, and 3D engineered heart tissues—to uncover the molecular mechanisms behind LMNA cardiomyopathy and help pave the way toward future treatments. LMNAcardiac.org is proud to be an official partner, ensuring transparency, open-access findings, and direct community involvement.

Get involved:
• Share your LMNA variant via our submission portal
• Donate blood to support the research effort
Every action, no matter how small, helps advance this vital work.

https://www.lmnacardiac.org/lmna-331-research-collaboration-between-lmnacardiac-org-and-maastricht-university-begins/

We’re deeply grateful to Team Action for LMNA for their extraordinary accomplishment during the recent 4 Days Marches in the Netherlands. Led by Karen, with support from Bernard, this dedicated team walked with purpose, raised awareness, and inspired many to support vital research into LMNA‑related cardiac conditions.

Thanks to their incredible efforts, over €20,000 was raised to help advance treatments and move us closer to a cure. Your determination and heart have made a lasting impact on patients and families worldwide.

👏 Thank you, Karen, Bernard, and the entire team, for showing the power of community in action.

🔗 Stay connected and see event highlights: X | Instagram | Full Story