July 2024 | LMNA Cardiac Newsletter

News update – LMNA Cardiac Diseases Network

LMNA PRIORITY Project Awarded Prestigious Leducq Grant | LMNA blood donation | PSIDER-Heart research project 

LMNA PRIORITY Project Awarded Prestigious Leducq Grant

LMNA blood donation

PSIDER-Heart research project

PSIDER-Heart is a research project in which various scientists and patients work together to understand more about inherited heart muscle diseases (also called cardiomyopathies) and to find out whether these diseases can be cured with new technologies.

Inherited cardiomyopathies are a group of disorders caused by mutations in genes. Current treatments focus on symptom relief. No cure is available yet. Promising gene editing techniques might help to develop a curative treatment.

To achieve this ultimate goal, a curative treatment, a lot of research is needed. Biological, medical as well as ethical and social issues are to be explored. Therefore a collaborative effort of all stakeholders is needed.

LMNA heart disease is one of the studied diseases
The PSIDER-Heart project focuses on inherited heart muscle diseases associated with Phospholamban (PLN) and Lamin A (LMNA) mutations. These mutations in pieces of the human DNA (also called genes) cause severe disease in a significant patient population.

Join LMNA Cardiac’s Hybrid Indoor Cycling Event!🚴

A mutation in the lamin gene can lead to a serious heart muscle disease. Therefore, extensive research is needed to find a solution. The Netherlands Heart Institute and the Patient Organization LMNAcardiac have taken the initiative to conduct a large international study into the causes, consequences, and potential treatment options. This international research focuses on hereditary factors and is expected to yield many new insights in the coming years.

In addition to hereditary factors, personal circumstances also significantly influence the course of the disease in the case of LMNA heart disease. A very involved family will assist Rogier Veltrop in an international study set up in Maastricht, Netherlands. This is particularly special because there are few family studies that include three generations, with both men and women, with and without the mutation, and with and without symptoms of LMNA heart disease. We hope to accurately map the influence of personal circumstances in this way. This greatly enhances the impact of the international study on heredity. Additionally, potential treatment options will better match the personal situations of patients. We are raising money for this research with the indoor cycling event.

Date: November 10th 2024
Time: 4pm – 7pm CET
Venue: Hybrid event – join us in person at the Netherlands Heart Institute in Utrecht (The Netherlands) or online from your gym or home.
Hosts: Expert indoor spinning trainers and coaches

Will you join us and help us raise money for LMNA research?