Every person affected by an LMNA mutation has their own story. Different lives, different dreams, different journeys. Yet so many of these stories share the same reality: a life-changing diagnosis that can turn everything upside down.
Today, we are sharing a powerful video featuring Rogier Veltrop, molecular cell biologist and heart transplant recipient, and Marco, an LMNA patient, together with his wife Esther.
Their stories illustrate the devastating impact that LMNA mutations can have on individuals and families. Both men were living active and ambitious lives when heart disease suddenly changed their futures.
Marco went from pursuing a PhD, participating in high-level sports, and enjoying an active lifestyle to facing heart failure, multiple medical interventions, and the daily challenges that come with living with LMNA-related cardiomyopathy.
Rogier’s journey ultimately led to a heart transplant. Today, he continues his mission with a renewed sense of purpose.
“In the time I have been given, in my second life with my donor heart, I want to do everything I can to eliminate the problems caused by LMNA.”
Their experiences show how rapidly LMNA-related disease can progress once symptoms begin. What may start with minor heart rhythm disturbances can develop into severe heart failure, life-threatening arrhythmias, the need for pacemakers or implantable defibrillators, and in some cases even heart transplantation.
Unfortunately, these stories are not unique.
Across the world, tens of thousands of people and families are living with the uncertainty and burden of LMNA mutations. Many face difficult decisions, ongoing medical monitoring, and the constant fear of disease progression.
At the LMNA Cardiac Diseases Network, these stories strengthen our determination to accelerate research and move closer to effective treatments and ultimately a cure.
Walking for a Future Without LMNA Disease
This is exactly why we are participating in the 4 Days Marches fundraising campaign.
Every step we take during the event represents our commitment to patients, families, researchers, and future generations who deserve a world without LMNA-related disease.
But we cannot do this alone.
Research requires funding. Progress requires action. And every contribution, no matter the size, helps bring us closer to new therapies and better outcomes for patients worldwide.
How You Can Help
You can support our mission by making a donation:
International donation page
https://LMNAcardiac.org/donate
Dutch 4 Days Marches sponsor page
https://stichtinglmnacardiac.devierdaagsesponsorloop.nl
Together, we can help fund the research that patients and families urgently need.
Thank you for standing with the LMNA community.
Watch the video below and hear directly from Rogier, Marco, and Esther about why this fight matters so much—and why we must keep moving forward.