About us

Our Foundation has been established to eliminate the life-threatening PLN heart disease p.Arg14del. This genetic disorder causes heart diseases (cardiomyopathies, arrhythmias…) whereby the pump function of the heart muscle is significantly defective. PLN gene carriers are burdened with serious heart failure problems which may lead to a heart transplant, ventricular assist devices or even sudden premature death. Read more about PLN and research.

Scientific PLN research

Our Foundation is continually involved in scientific research projects. We have expanded our network in the past years with an (inter)national joint venture of innovative Dutch and worldwide Research Centers. Thanks to you and your donations, our Foundation is able to focus even better at research on diagnostics, treatment and healing of heart muscle diseases caused by a Phospholamban gene mutation (PLN).

Prof Dr. Roger Hajjar, Professor Menko-Jan de Boer MD, PhD, FESC, FACC Cardiologist and Beau Meijer, general practitioner are all non-paid scientific advisors to the PLN Foundation.

Together with you, our PLN Foundation has the following objectives:

Financing of research projects on the treatment and healing of PLN heart diseases, such as cardiomyopathies, but also arrhythmias, heart transplant and donorship.

Finding and informing people with PLN mutation.

Performing all other health care actions related or beneficial to the above in the broadest sense of the terms.

PLN Foundation. Foundation of patients for patients.

Our Foundation has been established by volunteers or people suffering from PLN, family members and their loved ones, and tries to inform PLN gene carriers as much as possible about the latest developments and PLN studies. We also can establish contact between fellow PLN sufferers in order to share their own experiences and dilemmas… because we all are family and supporting each other is important in this disease process!

Below an overview of all our PLN related Foundation activities:

PLN INFO DAY

Every year we organize a PLN Info Day. On this day, researchers, stakeholders and specialists talk about PLN and the current PLN research. The next PLN Info Day is scheduled for Saturday, November 7, 2020.

PLN MONSTERTOCHT / PLN MONSTER TOUR

The third PLN Monstertocht should have taken place on Friday 19 June 2020. Unfortunately due to COVID-19 the Styrkeprøven is cancelled. But, we will be present again in 2021!

What is the PLN Monstertocht? A PLN cycling team with doctors, researchers, general practitioners, cardiologists and other involved starts in Trondheim to cycle to Oslo within 24 hours. 543 kilometers (Styrkeprøven). One day. A monster tour. Do you support our cyclists? Go to www.monstertocht.nl or follow us on the Monstertocht Facebook page!

SOCIAL MEDIA

You can find us at social media like Facebook, LinkedIn, Instagram and YouTube. Do you have social media accounts? Follow us and stay tuned for the latest news. On YouTube you can find videos from the PLN Foundation.

NEWSLETTERS

We regularly keep you informed about all PLN related matters and ongoing or upcoming Foundation activities. Do you wish to receive this news & features directly into your mailbox? Please subscribe to our mailing list. At any time, you can unsubscribe for our digital news (Opt-Out Privacy Policy) if you no longer wish to receive our newsletters.

SURVEYS & POLLS

An ethical matter or a small survey on your own experience in specific situations… take the poll! Please participate in our online polls because your opinion is important. Have a look on our website and Social Media for more information… and make your voice heard!

YOUR OWN STORY

You can read the experiences and personal stories of other PLN patients on our website and Social Media. Do you want to help other PLN family members by sharing your own story? Please contact us and send us a short article about it. Your publication will be published on our website and will also be shared on Social Media. You can also tell your story anonymously if you wish; we have full respect for your privacy.

GENEALOGY

The mutation was discovered in the Netherlands in 2010 and probably originated spontaneously between 1200 and 1400, in someone in the southeast of the province Friesland. All carriers of the mutation in the Netherlands descend from this one Frisian ancestor and we are looking for our ancestor. Do you want to share your family tree with us? Please get in touch!

Administration

Pieter Glijnis | Chairman

Evert de Boer | Secretary

Gerlof de Vries | Treasurer

Eric Kok  | General Boardmember

Jan van der Zouw  |  General Boardmember

Remuneration Policy

Our Foundation Board members are neither receiving remuneration, nor indemnities for their services.

Contact:

P.O. Box 66

1775 ZH Middenmeer

The Netherlands

info@plnheart.org

KvK nummer: 55839002

Bank account number: IBAN NL 95 FVLB 0225 788 020 on behalf of Stichting Genetische Hartspierziekte PLN.

RSIN/fiscaal nummer: 8518 79 950

Unpaid Scientific Advisors

Professor Dr. Roger Hajjar

Professor Menko-Jan de Boer MD, PhD, FESC, FACC, Cardiologist

Beau Meijer, General Practitioner