How do we look back on 2023 as the PLN Foundation? The short answer: good! We made fantastic breakthroughs and raised the visibility of the disease. The last days of the year pass and we look back on the past year and what it brought us. Curious? Read on quickly!
In 2023, we look back on a gigantic upward trajectory for the foundation. To take you through all the highlights of the past year one last time and to give you a sneak peek into next year, we wrote this article.
This is what we did in 2023
Are you reading? We list all our highlights:
- We organized no less than five (!) information afternoons this year. We started the year on Ameland and then we visited Houten, Drachten, Hoorn and we ended in Zwolle. A live stream of several afternoons is available. Curious? Check out all the live streams on our YouTube channel or watch the most recent one below:
- During the information afternoon in Houten, there was also a big scoop: the blood bus was on site for the first time. This bus is a mobile lab, allowing us to draw blood from carriers and then process it immediately. We then store this blood for scientific research, increasing the opportunities for scientists. The blood bus feels like our flagship!
- Thanks to a very concerned carrier of PLN, the idea of organizing fellow sufferers meetings again was raised. During such a meeting, what it means to be a carrier of the PLN mutation is discussed in an informal setting. Two successful meetings were organized and carriers felt supported!
- The foundation is widely supported by carriers and stakeholders. Those involved have also made themselves heard quite a bit this year. No fewer than nine actions were launched through our action website to raise money for the foundation. In doing so, we raised more than 36,000 euros for research!
Everything donated at PLN Foundation goes 100% to fund scientific research. Our costs are covered by various sponsors.
- As a foundation, we feel it is important to increase media coverage of PLN in order to reach more people as well. That worked out well this year! For example, we were featured several times on the radio, reached national television and our president Pieter gave interviews to the Financieele Dagblad, Cornelius Magazine and Elsevier, among others. He also featured in several podcasts. We keep a track of all our media publications in a handy overview, for when you want to check out the publications.
- One of our biggest projects was a completely new website! With this, we hoped to make PLN’s information even more accessible. We also recorded 13 new videos for this purpose. These can all be found on the website. With this, we highlight several themes!
- Our scientists left this year for Athens (Greece) and Philadelphia (America) for the annual CURE-PLaN meetings. During this consortium, scientists come together to share insights from research to promote new research. In Athens, communications advisor Nikki interacted with scientists and in Philadelphia, President Pieter did so.
- Thanks to the efforts of the very involved Kok family, who are also carriers of PLN, the amazing PLN Gala was organized. Earlier this was cancelled at the last minute due to the corona crisis. More than 260,000 euros were raised for research and we made it to the news broadcast of Hart van Nederland on SBS 6!
- In addition to all the videos we made previously, our Scientific Officer Luuk joined forces with an animator to create a new animation about PLN. This animation explains in an approachable way what it means to have PLN. So you can also easily forward these to friends, acquaintances or family!
So we look back on a good year for the foundation, but we still have plenty to do. Affordable treatment is closer than ever, but bringing that treatment to patients still requires many steps.
In addition, it is important for us to raise awareness of PLN, because how bad would it be if we soon have a treatment that does not reach everyone? So we will also stay busy next year to bring PLN to the attention of the general public!
This is what science did in 2023
Scientific research takes a lot of time, money and energy. Numerous passionate professionals worldwide are working on PLN research. Their insights cannot always be shared directly, but we have done our best to write down some insights for you anyway. This will give you an idea of where we are now:
Annet (Scientific Officer):
- “I think over the past year we’ve gotten a better picture of how the disease develops. The mechanism as proposed from the beginning does not quite match what we see in cells. At first, the picture was mainly that a cell no longer controls calcium levels properly, limiting contraction. This year, we gained more insight into another possible cause: we suspect that the broken protein tangles together and forms clumps, causing heart muscle cells to die.
- In addition, we are also one step closer to treating the disease. New techniques are being developed to ensure that the broken protein is no longer present in cells.
- DNA is in all cells of the body and so is the PLN gene. A group of researchers from the University of Dayton (USA) and Athens (Greece) has now discovered that the PLN gene also plays a role in the brain. This was examined through a mouse model; mice lacking the PLN gene were more active, had different sleep patterns and are more impulsive than healthy mice.”
Sources for this scientific research are:
- DWORF Extends Life Span in a PLN-R14del Cardiomyopathy Mouse Model by Reducing Abnormal Sarcoplasmic Reticulum Clusters
- A Novel Role for Phospholamban in the Thalamic Reticular Nucleus
Of course, many other insights and scientific breakthroughs have been made. For now, the most important thing is to work together to bring treatment methods from the lab to the patient. Several steps will be taken for that next year, so be sure to keep following us on social media and through our newsletter.
Our colleagues have another message for you
We look back on 2023 with great satisfaction. With confidence we move forward! To end the year, we also asked our colleagues to share a bit about their year and efforts.
Annet (Scientific Officer):
“I think we will be able to go to some patients in the next year with the first experimental treatment. This does not mean that by the end of next year we will have something that will help everyone. In fact, these are initial trials and it may be years before we have an approved treatment that all patients are eligible for. I think we as a foundation will also play a larger role in bringing researchers together. The CURE-PLaN consortium expires next year, and the researchers said they would like to continue organizing this type of meeting. This is a great opportunity for the foundation.
The end is really in sight. Just hang in there!”
Marise (Office Manager):
“There is light at the end of the tunnel. The gala was great, so were the region meetings and the blood bus being up and running after a big legal job to get this done. We have a new website and are working with a great and energetic team with a very clear focus on our goal.
I dare say that last year we really worked incredibly hard with the whole team to get even closer to our goals. And we will do so next year with just as much energy, enthusiasm and hope. The involvement and contribution of the supporters helps tremendously, this makes all the difference. So: help us find a solution for PLN. Let’s together make PLN known in the Netherlands.”
Margreet & Marianne (Blood Bus Coordinators):
“A highlight worth mentioning is the mobile laboratory in the PLN blood canister. It is unique for PLN carriers to voluntarily donate blood samples there for storage in the PLN biobank. The blood canister was first used in Houten and then in Drachten, Hoorn and Zwolle. We really enjoy using our knowledge and expertise for this and coordinating the blood draws.
We have some really fun things in the pipeline for next year, but it’s too early to share it with you. You will definitely hear more about that!”
Nikki (Communications Advisor):
“It is unprecedented how hard all the people I have met this year are working to find a solution for PLN. I fully believe that it is not always easy to look to the future with confidence and hope, but I would still ask you to do so. With all the expertise and commitment out there, I am sure that affordable treatment for PLN is getting closer by the day.
Meanwhile, I continue to work very hard to raise awareness of the disease so that all carriers are aware of the mutation and can also take appropriate measures for it. In any case, we are going for it to get on television one more time and reach the target amount on our action website. We desperately need you for that!”
Pieter (Chairman):
“It feels like an honor to lead our foundation with a highly motivated team of staff and volunteers. We have accomplished an incredible amount this year and the pace of progress toward making this disease treatable continues to increase. It remains extraordinary to see how researchers are extra motivated by the stories of carriers and patients. The other way around, of course, this also happens.
It is my wish to be able to start the first experimental treatment in a small number of patients sometime next year. This treatment is unlikely to solve the disease, but we hope to delay and/or alleviate it. This will be a great step. Let’s go for it!”
The plans for 2024
On the day of publication, it is only a few days before Christmas. We are wrapping up the final occupations here and then we are folding laptops to enjoy several weeks off. Of course, we wish you an immense amount of happy holidays and a good New Year.
So in 2024, we will go for the first steps that bring a treatment from the lab to the patient as well as even more awareness for PLN. Would you like to stay informed? Then sign up for our newsletter.
From Friday, December 22, 2023 through Monday, January 8, 2024, our office will be closed. Our colleagues are off work to enjoy the holidays, recover from the past year and recharge for 2024! We won’t be posting any new messages via social media for a while. Our emails get limited reads.