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., Europe and Asia, uniting diverse skills, experiences, and perspectives:
Our core team
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.
Email: rogier@lmnacardiac.org
Email: rogier@lmnacardiac.org
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.
Email: sean@lmnacardiac.org
Email: sean@lmnacardiac.org
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.
Email: millie@lmnacardiac.org
Email: millie@lmnacardiac.org
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.
Email: shauna@lmnacardiac.org
Email: shauna@lmnacardiac.org
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.
Email: mary@lmnacardiac.org
Email: mary@lmnacardiac.org
Gabriela (Gaby) Pacheco, RDN (San Diego, CA)
Gaby, a Registered Dietitian/Nutritionist, is a LMNA patient with two brothers who are transplant recipients. She is a Lifestyle, Health and Wellness Coach with particular interest in working with special needs groups, such as food allergies or disease states. Gaby brings clinical and personal experience in nutrition to assist the LMNA population achieve attainable and sustainable lifestyle modifications for optimal health by prioritizing balance in life.
Email: gaby@lmnacardiac.org
Email: gaby@lmnacardiac.org
Melissa Prevost (Ontario, Canada)
Melissa is an energetic spark – who thrives on creating possibility and turning ideas into action. As a LMNA patient with 30+ years as an Occupational Therapist and Reg. Psychotherapist, and a background in Kinesiology, Melissa combines personal and professional insight with empowering those with LMNA to live fully, dream big and continue doing what matters most. By bridging physical, cognitive, and emotional challenges with activity modification, equipment, and skills training - Functional goals with self-care, work, leisure, and community life can be adapted, helping those with LMNA maintain function, prevent loss and support quality of life as LMNA progresses.
Melissa is an energetic spark – who thrives on creating possibility and turning ideas into action. As a LMNA patient with 30+ years as an Occupational Therapist and Reg. Psychotherapist, and a background in Kinesiology, Melissa combines personal and professional insight with empowering those with LMNA to live fully, dream big and continue doing what matters most. By bridging physical, cognitive, and emotional challenges with activity modification, equipment, and skills training - Functional goals with self-care, work, leisure, and community life can be adapted, helping those with LMNA maintain function, prevent loss and support quality of life as LMNA progresses.
Email: melissa@lmnacardiac.org
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.
Email: stefan@lmnacardiac.org
Email: stefan@lmnacardiac.org
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.
LMNA Cardiac Country/Area Ambassadors
Our LMNA Cardiac Country/Area Ambassadors bring together dedicated individuals in their regions to support those affected by LMNA-related cardiac diseases. Through raising awareness, offering guidance to patients and families, and fostering strong community connections, these ambassadors make a meaningful impact. We are deeply honored to collaborate globally, building hope and advancing care for our community.
Ben Chu (Singapore)
Ben Chu is a dedicated LMNA patient advocate and experienced management executive based in Singapore. Following his diagnosis of Emery-Dreifuss Muscular Dystrophy Type 2 in 2019 through genetic testing, Ben has become a strong voice within the LMNA community, offering insight drawn from lived experience. As a member of the Asian Chinese community, Ben actively supports individuals and families across Asia, providing guidance and a listening ear to those navigating their own LMNA journeys. His mission is to foster connection, raise awareness, and offer meaningful support to those affected by LMNA-related conditions.
Email: ben@lmnacardiac.org
Email: ben@lmnacardiac.org
Jianze Fang (China)
Jianze, a LMNA/EDMD2 patient, disability rights advocate and scuba diver in China. Holding a master degree from Macao University of Science and Technology, he spearheads physical accessibility initiatives - having successfully redesigned 150 campus access points in 2020 - while building communication channels between disabled communities and policymakers. Fang currently drives nationwide urban accessibility reforms and champions collaborative research efforts to accelerate LMNA gene therapy breakthroughs in China.
Email: jianze@lmnacardiac.org
Jianze, a LMNA/EDMD2 patient, disability rights advocate and scuba diver in China. Holding a master degree from Macao University of Science and Technology, he spearheads physical accessibility initiatives - having successfully redesigned 150 campus access points in 2020 - while building communication channels between disabled communities and policymakers. Fang currently drives nationwide urban accessibility reforms and champions collaborative research efforts to accelerate LMNA gene therapy breakthroughs in China.
Email: jianze@lmnacardiac.org
Join Us
We invite you to join our growing network as we work together to advance research, support patients, and drive innovation in LMNA-related cardiac disease. Whether you’re a patient, caregiver, researcher, or industry leader, your insights and contributions are vital to achieving our mission. Interested? Contact us by using the volunteer interest form.