If someone had asked me about 2020 last year, I could never have predicted a pandemic. Full of beautiful plans, the PLN Foundation entered the new decade: a spectacular PLN gala, the monstrous PLN Monster Cycling Tour in Norway….. Due to the COVID-19 pandemic, these fundraising events have been temporarily put aside. But we immediately decided to continue with the activities that were possible.
The first Heart Donor Bank in The Netherlands opened its doors at the beginning of June. The Heart Donor Bank is a biobank in which heart tissue from deceased donors is stored for scientific research. This heart tissue can be used to investigate how a healthy heart functions or what exactly goes wrong with various heart diseases. This allows diseases to be diagnosed earlier and because of this treatments can be made possible. Scientists are grateful with the opening and they hope there will be more heart tissues available for research.
In May and November, the half yearly CURE-PlaN consortium meetings took place online. The researchers called in worldwide, and although it took some getting used to, it is wonderful to see how good the team works together, that great discussions are also created online and that a lot of information is shared in mutual trust.
Unfortunately, PLN research does suffer from the COVID-19 pandemic. Mainly because in March the laboratories closed worldwide and are still limited open. The scientists work in shifts to keep the occupancy as low as possible. At the moment the research has been delayed for about 6 months and as far as can be predicted we fear a backlog of 9-12 months at the end of the COVID-19 pandemic. Not good news, and unfortunately this also entails additional costs in a year where fundraising is tough. Because the gala has been moved to a later date, and the PLN Monster Cycling Tour was cancelled, we had an incredibly tough year. Fortunately, in September a bike ride in the Dutch province of Friesland was possible: the “PLN 11Stedentocht – back to the roots”. With the help of volunteers and the great efforts of the cyclists, everyone has had a wonderful day and a fantastic amount of over 103,000 euros has been raised for our PLN Foundation. As always, I personally guarantee that all donations are fully spent on our goals. Costs are reimbursed 100% thanks to a sponsor. We liked the day so much that we will turn this Dutch bike tour into an annual event and the plan is that on Saturday September 11, 2021 we will be cycling again through Friesland with a group of cyclists! In addition, a group of doctors and cardiologists wants to cycle the PLN Monster Cycling Tour for us again. Great!
We had good media coverage last year. Mirjam Bartelsman made an impressive documentary about PLN and the dllemma of whether or not to have yourself tested for this genetic disorder. An item at the Dutch program EenVandaag with the cooperation of Wouter Visser. PLN carrier Sabine participates in the TV program “De100”. ADLive. BNR radio. NOS radio 1. Regional newspapers. A podcast. You can read this back and watch through our press page on the website.
No PLN Info day possible? Then we organize a Webinar! This was a success and we will certainly do this more often in 2021. The presentations of the Webinar can be viewed via our YouTube page.
Before I close I would like to thank all the volunteers and our interns for their efforts and all of you for your trust in our Foundation. In 2021, we will be working hard again to find the solution for PLN!
Worldwide, an incredibly beautiful team of top researchers is working hard to find a treatment opportunity for PLN and I am sure it will be found. Can I ask you to help us financially to support them in this difficult year?
Despite everything, we wish you happy holidays!
Chairman PLN Foundation