Roxanne commits to the PLN Youth Day: ‘It’s very important that we talk to each other about it’

On Saturday, April 20, 2024, we will host the first official PLN: You’ll Have It Youth Day. This day is for young people ages 16 and up through young adults up to 35. Partners, parents and others are also welcome. During this day, we talk about what it means to have PLN. Thanks to the efforts of a very dedicated team of volunteers, this day can be organized in Hoogkerk. Leading up to this special day, we talk to the people behind the scenes.

One of the young adults committed is Roxanne (28) and living in Amsterdam. She begins a new job as a program supervisor at an asylum seekers’ center in mid-March. “Apart from working and living, you can find me at the gym or walking a lot. Sitting still is not my thing,” she says enthusiastically. She learned about PLN when doctors discovered that her father carried the PLN mutation. “He had already been transplanted. At first, not much was known about it and I had no idea what it entailed.” Roxanne was about 15 years old at the time.

Choosing to test

Just before Roxanne had herself tested, her brother received an ICD. “He was showing signs of PLN. At that point, I myself felt I needed clarity.” She no longer wanted to live in the gray area of being a carrier or not. Waiting for the phone call with the results felt like waiting for the results of her final exams. “Only here you hope the result is negative.” Unfortunately, this was not the case for Roxanne.

It is still difficult to attach a word to the meaning of being a carrier. “It felt very crazy and it still feels that way. For me, it’s like I have something that I don’t actually have, yet again, yet again, I don’t.” Roxanne learned about the PLN Foundation through her father. He has been volunteering with the foundation for a little longer.

Involved in Youth Day

In October 2023, a podcast episode came out on behalf of the podcast Sick Stories. In this episode, Roxanne talks about what PLN is and how it affects her life. As a result of this podcast, she shared her story at a foundation information afternoon. “My goal was to inspire young people to talk to each other.” Volunteer Annette then asked Roxanne to help organize Youth Day.

“It’s very important that we talk to each other about it, and I also think it would be very fun and valuable to meet people my own age who are carriers.” According to Roxanne, the purpose of this day is to be sociable, valuable and useful together. “A day where you get to know people who are somewhat in the same boat. They can understand you and really empathize. We also want there to be an opportunity to ask questions. Questions you might not ask at home or with an expert.” From the open atmosphere, she hopes for a conversation that belongs to young people’s lives.

Would you like to attend Youth Day? You can register for free for a day of information, meeting and interaction. You are not alone and certainly don’t need to be! For example, bring your parent, partner or other involved person and be welcome during this beautiful day at Van der Valk in Hoogkerk. Sign up quickly through this page on our website.

Stay Updated

On average, we send out one email per month to people who wish to stay informed about developments regarding the foundation and PLN. In these emails, we cover various topics such as events, information sessions, and updates related to PLN research.