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

Professor Dr. Roger Hajjar, Professor Stephan Lehnart, Professor Menko-Jan de Boer MD, PhD, FESC, FACC Cardiologist, family doctor Beau Meijer, and Luuk Kerckhaert, a medical student at Leiden University Medical Center, serve as unpaid scientific advisors to the PLN Foundation. Together with you, Stichting PLN has the following objectives:

Funding

Funding research for the treatment and cure of heart muscle diseases (such as cardiomyopathies, arrhythmias, heart transplantation, and organ donation).

Supporting patients

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
of patients for patients

Our foundation was established by volunteers, i.e., patients with PLN, family members, and their loved ones, aiming to provide as much information as possible to PLN carriers about the latest research developments. Additionally, we connect carriers online and offline to share their own experiences and dilemmas because supporting each other in this process is essential! Below is an overview of all our PLN-related activities:

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.

You can find us on various social media platforms, especially on Twitter, Facebook, LinkedIn, Instagram, and YouTube. Follow us online and stay informed about the latest news.

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.

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Our Dutch Board

Voorzitter Pieter van Stichting PLN.

Pieter Glijnis

Chairman

Bestuurslid Jan van Stichting PLN.

Jan van der
Zouw

Board Member

Secretaris Evert van Stichting PLN.

Evert de Boer

Secretary

Bestuurslid Yolanda van Stichting PLN.

Dr. Yolande Appelman

Board Member

Penningmeester Wouter van Stichting PLN.

Wouter Visser

Treasurer

Eric Kok

Board Member

The board members receive no compensation or expense reimbursements for their services.

Our Dutch Office Team

Officemanager Marise van Stichting PLN.

Marise Goodwin

Office Manager

Scientific Officer Luuk van Stichting PLN.

Luuk Kerckhaert

Scientific Officer

Communicatieadviseur Nikki van Stichting PLN.

Nikki Pommer

Communication Advisor

Scientific Advisor Corné van Stichting PLN.

Corné van Dam

Scientific Advisor

Coördinator Vrijwilligers & Events Annette van Stichting PLN.

Annette Klinkert

Volunteer events & fellow sufferers

Scientific Officer Annet van Stichting PLN.

Annet Linders

Scientific Officer

We are supported by many other volunteers and scientists.

Bas Westerweel

Ambassador

“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.”