Every month, committed supporters and loved ones start actions on our dedicated fundraising website. All money raised through this website is 100% dedicated to scientific research. Thanks to this research, we can work towards eradicating PLN and getting closer to a treatment. We are enormously grateful to our supporters for this support and are therefore also happy to highlight your actions!
Because Kay’s father is a carrier, the family comes into contact with the disease PLN. Meanwhile, Kay’s father has a donor heart. “We found out pretty quickly that Kay was also a carrier. He is a carrier of a mutation that can cause heart problems. You automatically start looking up more about it. That’s how we came into contact with the foundation,” says Monique.
Finally, Monique and Kay decide to start an action together, which everyone can join. “We have had a lot of worry and sadness as a result of the problems PLN has caused. Even now we maintain concern that Kay may develop heart disease.” Yet the family is also taking action: they are eager to contribute to further research. “For me, as a mother, it is very important that a treatment method be found if Kay develops symptoms,” she said.
In addition to a possible solution for Kay, a treatment method offers support for other carriers as well. “That such a small gene can cause so much misery is unacceptable. It is fantastic what the PLN Foundation has already discovered and achieved in this to one day eliminate this little monster completely,” Monique explained. As long as there is no solution, actions like this to raise money are vital.
“Our team consists of Marjon and her daughter Ise. They walk the 5 kilometers with us. Marjon was friends with Kay’s uncle, who was also a carrier and sadly passed away. Cas and his son Jort, who will run the 15 km. Cas is a friend of Kay’s. He and his father liked this sporting activity for charity, which we really like. We (Monique and Kay) are going to try to run the 15 km, for us this distance is a big challenge, but we want to go for it. Kick is participating in the kidsrun!”
The group tries to focus as much as possible on positive things rather than concerns. They hope other carriers can do the same. A treatment method is close at hand!
Would you like to support or join the Ijsselrunners? You can help them tremendously by contributing to their personal action page. All money raised from this will go toward scientific research to better understand the disease and find an affordable treatment.