As the PLN Foundation, our primary mission is to find affordable treatment for PLN. No expense is spared to achieve this goal. In addition, we believe it is important to reach out to carriers. Because if they know they carry the PLN mutation, they can anticipate proper care more quickly. Carriers who already know, we bring together online and offline. In the following carrier portraits, we speak to Annette.
Annette has long been involved with the foundation. She dedicates herself as a volunteer coordinator of our events and peer contact. For example, she is responsible for the information afternoons we organize several times a year. Recently, this has included peer-to-peer meetings. By doing this regularly, we give carriers a face and place to ask their questions and be able to express what the disease means to them.
What events do we organize?
- Information afternoons: during these afternoons (usually on Saturdays) interesting speakers tell more about PLN. You can discover more about the course of the disease, possible treatment methods and the progress of research. Blood is also often drawn during these meetings. This is what carriers donate to the foundation. The blood is used for scientific purposes.
- Fellow sufferers meeting: during this afternoon (also usually on Saturdays) fellow sufferers get together in an informal setting. Under the guidance of an experienced psychologist or foundation representative, carriers have conversations about what it means to be a carrier of the mutation.
The meetings we host are free for visitors. However, it is important to sign up in advance. You can always check the calendar on our website, where you will find the most recent additions of events.
Thanks to Annette, all of our programs and afternoons are filled with great content. She approaches the speakers, she introduces the presentations and is often the first person you speak to at the foundation. Thanks to her own experiences and broad knowledge, Annette can support fellow sufferers well. Curious to hear more of her story?
We are incredibly grateful for Annette’s commitment to the foundation, porters and our events. Fortunately, she enjoys doing this herself, as we recently got to catch her beautiful words on camera again.