August 2026 | LMNA Cardiac Newsletter

We are pleased to share an upcoming free webinar for the LMNA community exploring an important new area of research: gene therapy for LMNA-related dilated cardiomyopathy (DCM).

The webinar, “LMNA Gene Therapy: A New Approach to LMNA Cardiomyopathy,” will take place online on Wednesday, September 9, 2026, from 6:00–7:00 PM ET.

Organized by the Genetic Cardiomyopathy Awareness Consortium (GCAC), the session will feature experts from Nuevocor and Mayo Clinic, who will discuss NVC-001, an investigational gene therapy being studied specifically for LMNA-related DCM, and the SUNBEAM-LMNA clinical trial, the first study evaluating this therapy in humans.

The webinar will cover how the investigational gene therapy is designed to work, the goals and design of the clinical trial, potential eligibility, and important medical and safety considerations. There will also be an opportunity to learn more about the science behind this new approach.

We warmly encourage patients, families, and others interested in LMNA research and emerging therapies to register and learn more. Unable to attend live? Register anyway to receive access to the recording.

👉 Learn more and register for the free webinar:
LMNA Gene Therapy and the SUNBEAM-LMNA Clinical Trial

We are pleased to share a new episode in our LMNA Cardiac Patient Interview Series, featuring Deana Archibald and her deeply personal story: “From Loss to Advocacy: A Mother’s Mission for Her Children.”

In this conversation, Deana shares her experiences with LMNA-related cardiac disease, the impact it has had on her family, and how loss and personal challenges have shaped her commitment to advocating for her children and the wider LMNA community.

Through our patient interview series, we aim to give a voice to people affected by LMNA, share real-life experiences, and help patients and families around the world connect, learn, and feel supported. Every LMNA journey is different, but sharing these stories can create greater understanding and awareness of the realities of living with an inherited cardiac condition.

We warmly encourage you to watch and share Deana’s story with others who may benefit from hearing her experience.

Read more about the LMNA Cardiac Video Series:
https://www.lmnacardiac.org/lmna-cardiac-video-series-new-episode-now-available/

Watch the new episode: From Loss to Advocacy: A Mother’s Mission for Her Children | Deana Archibald

LMNA Cardiac is taking part in the Ticking Clock Challenge, a fundraising initiative to support awareness, research, and patient advocacy.

By participating, donating, or sharing the campaign, you can help accelerate research and improve outcomes for individuals and families affected by LMNA-related cardiac disease.

Every contribution makes a difference as we work together to create a brighter future for the global LMNA community.

Learn more and support the challenge through our campaign page.

After four unforgettable days of determination and teamwork, the Action for LMNA team successfully completed the 2026 Nijmegen Four Days Marches, raising both awareness and vital funds for research into LMNA-related cardiomyopathy.

Walkers, volunteers, healthcare professionals, families, friends, donors, and supporters came together with one shared goal: helping create a future with earlier diagnosis, better treatments, and ultimately a cure for LMNA-related heart disease. Every step, conversation, and donation helped bring greater attention to this rare inherited condition.

But the campaign does not stop here. The next challenge is already ahead: the Ticking Clock Challenge at Circuit Zandvoort. Participants can walk or run, individually or as a team, while raising funds to support LMNA research.

We warmly encourage our community to join the challenge, support a participant, make a donation, or help spread the word. Every contribution helps move LMNA research forward.

👉 Read more about the Action for LMNA campaign and how you can get involved:
https://www.lmnacardiac.org/the-action-for-lmna-campaign-continues/

On 24 October 2026, the LMNA community will come together for an in-person patient meetup in Frankfurt, Germany.

The meetup offers patients, families, and others affected by LMNA the opportunity to meet face-to-face, share experiences, ask questions, and connect with others who understand the journey.

Building these personal connections is an important part of strengthening our LMNA community. Whether you have joined a patient meeting before or this will be your first time, we would be very happy to welcome you in Frankfurt.

We encourage everyone who may be interested to join us and help spread the word among other patients and families in the LMNA community.

More information about the Frankfurt LMNA meetup