About Us
Our foundation was established to conquer the life-threatening heart muscle disease PLN (scientific name p.Arg14del). Chairman Pieter Glijnis was confronted with the PLN heart disease in 2011, which turned his life as a succesful entrepreneur upside down. Eventually, it became his life mission to find an affordable treatment for the disease. We now work with various board members, scientists, professionals, and volunteers towards finding a solution through the foundation.
Scientific
PLN Research
The PLN Foundation is constantly engaged in scientific research and projects. Over the years, we have expanded our network with (inter)national collaborations of renowned Dutch and foreign research centers. Thanks to you and your donations, the foundation can focus on research into diagnostics, treatment, and cures for heart muscle diseases caused by a Phospholamban gene mutation (PLN).
Objectives
Together with you, Stichting PLN has the following objectives:
Important documentation:
Funding
Funding research for the treatment and cure of heart muscle diseases (such as cardiomyopathies, arrhythmias, heart transplantation, and organ donation).
Fellow Carriers
Finding and informing individuals with a PLN mutation. We bring carriers together both online and offline to connect, share experiences, and support each other.
Raising Awareness
Carrying out all further actions that are in any way related to the above or may be conducive to achieving these goals. We aim to increase awareness of the disease.
PLN Foundation: The foundation for and by carriers
Our foundation was established by carriers with PLN, family members and their loved ones. We try to inform PLN carriers as much as possible about the latest developments and research. We also connect peers to exchange experiences and share feelings. We see the team, along with the porters and stakeholders, as one big family supporting each other in this fight against PLN.
Do you want to learn more about the PLN mutation and its impact on your heart? Are you interested in the progress of our research? Would you like to connect with fellow carriers? Then, attend one of our regional PLN information meetings!
Check here for the upcoming PLN information day.
The mutation was discovered in the Netherlands in 2010 and is believed to have spontaneously originated between 1200 and 1400 in someone from the southeast of Friesland. All carriers of the mutation in the Netherlands are descendants of this one Frisian ancestor, and we are looking for our ancestor. Read our call for genealogy research here.
We regularly keep you informed about all PLN-related matters and ongoing or upcoming activities of our foundation. If you want to receive this important news directly in your mailbox, you can sign up for our newsletter. you can sign up for our newsletter. You can opt-out of our digital publications at any time (Opt-Out Privacy Law) if you wish.
Regularly, you can participate in our online polls as your opinion matters. The topics can vary from ethical questions to small research about your own experiences with specific situations. Check our website and social media for more information, and let your voice be heard!
On our website and social media, you can read the experiences and personal stories of other PLN patients. Would you like to help others in our PLN family with your own story? You can always contact us about this and write a short article about your experiences. Your story will be published on our website and shared on social media. If you prefer, you can make your story anonymous – we fully respect your privacy.
Our Board
Pieter Glijnis
Chairman
Eric Kok
Board Member
Evert de Boer
Secretary
Dr. Yolande Appelman
Board Member
Wouter Visser
Treasurer
Jan van der
Zouw
Board Member
The board members receive no compensation or expense reimbursements for their services.
Other Colleagues
Marise Goodwin
Office & Project Management
Luuk Kerckhaert
Management of Clinical Operations
Nikki Pommer
Marketing & Communication
Corné van Dam
Scientific Communication / Advise
Wouter Visser
Coördination Events
Annet Linders
Scientific Research & Development
Our core team of colleagues is passionately and diligently committed to the goals of the foundation and to the bearers of PLN. In addition to this team, we are also intensively supported by many volunteers.
Our scientists
Renee Maas
Scientific Advisor
Margreet Schoorl
Blood Bus Coordinator
Tess Beekink
Research Analyst
Marianne Schoorl
Blood Bus Coordinator
Patricia Vanhooydonck
Scientific advisor
Menko - Jan de Boer
Professor of Cardiology (MD, PhD)
Affiliated scientists dedicate themselves with passion and expertise to support us with scientific advice.
Our ambassador(s)
Our fight against PLN is not something we do alone, we need every person involved in the foundation very much. Therefore, we also welcome all the efforts of carriers, partners and ambassadors who want to commit to one of our causes.
Bas Westerweel
"During my recovery after my cardiac arrest, it became clear to me that I am not the only one whose engine is sputtering. I started to delve into questions about vitality, nutrition, and heredity and quickly realized that there are defects whose cause is not so easy to define. I met passionate experiencers who have the heart to search for solutions. I became fascinated by their energy and joined. I now occasionally turn my backpack full of work and life experience on the table of Stichting PLN to contribute to an important search for solutions."
Becoming an ambassador for the foundation
We are always looking for ambassadors who can help us expand our reach, appeal to funds or people who can and want to speak out to the media about the PLN mutation.