About Us

Our Mission

Our mission is to bring together LMNA experts, key opinion leaders and patients to accelerate research and development, to aid in finding effective treatments for LMNA-related cardiac disease.

How We Started

Stefan Bassant, entrepreneur and investor, had the idea for LMNAcardiac.org in early 2021. Living with LMNA-related cardiac disease, Stefan realised there was a need to connect the people with the condition and those in a position to help treat it.

After commissioning research to uncover experts and key opinion leaders in the field, Stefan met his business partner, Rogier Veltrop. Rogier also has LMNA-related cardiac disease, although his background is very different. A group leader and researcher at Maastricht University.

Our Vision

Our vision is to grow this community into a thriving forum for shared learning, advocacy, and innovation, fostering collaboration among individuals dedicated to LMNA-related cardiac disease.

Our global network continues to expand and now includes:

400+ experts and key opinion leaders
450+ companies active in the LMNA/cardiac field
800+ patients worldwide

Our Growing Team

The LMNA Cardiac team spans the U.S. and Europe, uniting diverse skills, experiences, and perspectives:

Dr. Rogier Veltrop (The Netherlands)

Molecular cell biologist, LMNA researcher and heart transplant recipient due to an LMNA-mutation. Rogier is in charge of the scientific arm of LMNAcardiac.org. He is a renowned group leader, and his lab focuses on LMNA mechanobiochemistry in 3D cardiac systems at the Cardiovascular Research Institute (CARIM), Maastricht University. Rogier’s personal and scientific motivation adds a unique dimension to his work.

Sean Pinegar (Omaha, Nebraska, USA)

Sean is an LMNA patient, transplant recipient, and entrepreneur with expertise in software development and product management. He spearheads projects like laminopathies.net, oversees conference management, and develops strategies to leverage LMNAcardiac.org’s growing partner network.

Millie Clarkson (Baltimore, Maryland, USA)

A social worker and LMNA patient, Millie brings her clinical and personal experiences to support others with their mental health care. Millie is committed to organizing bimonthly patient meetings, creating and connecting others to mental health resources, and coordinating future in-person community events.

Shauna Planck (Denver, Colorado, USA)

Shauna, an LMNA patient and experienced non-profit leader, brings expertise in organizational planning and resource development. She is refining our strategic plans, supporting in-person group initiatives, and creating educational materials for healthcare providers to raise awareness about LMNA-related cardiac disease.

Mary O'Connor Mack (Nantucket, Massachusetts, USA)

Mary is an LMNA patient, transplant recipient, and passionate patient advocate. She founded the Laminopathies Support Group on Facebook in 2017, now with over 750 members. Mary’s journey with LMNA began in 2003, when genetic testing confirmed the cause of her pacemaker dependency and family’s history of sudden death. Her son, Sean, received a transplant on October 6, 2024.

Stefan Bassant (The Netherlands)

Stefan’s entrepreneurial background and personal experience with LMNA-related cardiac disease make him a driving force behind LMNAcardiac.org. As the organization’s public face, he focuses on building networks, fostering partnerships, and raising awareness. Stefan’s family also carries the LMNA mutation, fueling his dedication to advancing research and finding effective treatments.

In addition to our core team, we are fortunate to have the support of dedicated volunteers from our network. These individuals contribute their time, skills, and effort to assist with diverse tasks, enabling us to achieve more and make greater progress. Their contributions are deeply appreciated and vital to our mission.

Join Us