Latest news with #MitochondrialAwarenessWeek
Yahoo
13-03-2025
- Entertainment
- Yahoo
Prince Frederik of Luxembourg ‘couldn't get up by himself' before death at 22, says director: ‘Really painful to watch'
The filmmaker who chronicled Prince Frederik of Luxembourg's battle with the rare genetic disorder PolG has shared her experience working with the royal, who passed away on Mar. 1 at 22. Commissioned by Frederik's mother, Princess Julia of Nassau, to helm an educational short film about the disease with Frederik at its center, director Mei Fa Tan said she was left 'inspired' by the prince but also found it 'painful to watch' him struggle with his health. Frederik's death was revealed by his father, Prince Robert, the first cousin of Grand Duke Henri of Luxembourg, in a statement on the website of the POLG Foundation, an organization Frederik founded to promote research and find a cure for the disease. Affecting approximately 1 in 5,000 people, the genetic disorder robs the body's cells of energy, causing progressive multiple organ dysfunction and failure. Six months prior to the royal's untimely passing, his foundation released the short film directed by Tan on Sep. 4, 2024 for Mitochondrial Awareness Week. '[He was] so interested in so many topics,' Tan told Us Weekly on Wednesday. 'He would love to talk about basically anything. Mostly film and music … But his body would not allow him to do as much. So that was really painful to watch because he was trying his best.' Frederik's disease was so advanced that, at times, he 'couldn't even get up by himself,' Tan said. 'I mean, the situation is very grave, but he would always keep his dignity in all situations and keep his sense of humor,' she shared. 'I thought it was very, very sad, and I was very touched by this because this is not how life is supposed to go,' Tan added. 'For Frederick, he just started to experience lots of things, and everything was taken away from him, bit by bit in an inevitable way. I found this very hurtful.' Tan worked directly with Frederik on the project, meeting with him several times before she wrote the film's script. Of the film's opening, which shows the prince watching a selection of home movies from his childhood, Tan explained that she wanted to show 'all the things he used to do that he can't be doing anymore.' 'When you're a kid, you've got all these dreams, all these aspirations, these things you want to do. The possibilities are endless,' Frederik said in a voice-over narration at the start of the film. 'I'm not sure I understood all the consequences of PolG when I first got diagnosed. It's more subtle, where slowly, the world is getting smaller and smaller.' Though born with the disease, Frederik wasn't diagnosed with PolG until he was 14. Tan also revealed that the energy on set was 'very positive' and 'light,' even with the film's weighty topic. 'I think it was very brave of all the kids who participated in the film because they really took it seriously,' she said of the short's other subjects. 'But they also let their inner joy and spirit still be there.' Educating herself about PolG was a 'learning curve,' Tan added. 'In a sense, it was good because I could really put myself in the position of someone who didn't know anything about that disease, which would be the case for most people watching the film,' she explained. 'I think it's kind of a lesson, you know. Sometimes, you reconsider your life when you see people that they have it so bad, their days are counted, and they still find a way to be inspiring, to be positive and to do their best.' In his message announcing Frederik's death, Prince Robert praised his son's tireless efforts to raise awareness about the disease and fund research to find a cure for PolG, calling him, 'my Superhero.' 'The POLG Foundation, in only three short years, has accomplished so very much, including funding four major research projects, totaling over $3.6 million,' Robert said of Frederik's work to help others diagnosed with PolG. The young royal also partnered with designer Donna Karan to develop the MITO clothing line, selling items through his POLG Foundation to further the organization's efforts. In addition, Frederik participated in medical trials which helped to develop cell lines for research across Switzerland, the US and Europe. His work laid the foundation for The POLG Toolbox, a crucial resource for scientists, his proud father said.
Yahoo
10-03-2025
- Entertainment
- Yahoo
Luxembourg's Prince Frederik Opened Up About ‘Devastating' Rare Disease Before His Death at 22
Luxembourg's Prince Frederik starred in a short film which detailed his 'devastating' experience with a rare disease prior to his death. Frederik was born with PolG Mitochondrial disease, an incurable genetic disorder that causes organ dysfunction and failure. Frederik's father, Prince Robert, announced his son's death at the age of 22 via Instagram on Saturday, March 8. 'It is with a very heavy heart that my wife and I would like to inform you of the passing of our son, The POLG Foundation Founder and Creative Director, Frederik,' Robert wrote. 'Frederik knows that he is my Superhero, as he is to all of our family, and to so very many good friends and now in great part thanks to his POLG Foundation, to so very many people the world over,' he added. Luxembourg's Prince Frederik Dead at 22 After Battling Rare Disease Prior to his death, Frederik and his parents co-founded The POLG Foundation three years ago, 'to support and accelerate research to find effective treatments and a cure for PolG mitochondrial disorders,' the website states. More recently, the foundation created a short film, titled The PolG Foundation Film, released on September 4, 2024, for Mitochondrial Awareness Week. 'PolG is a mitochondrial disease destroying the energy-producing structures within human cells,' a written statement reads at the start of the film. 'It is a devastating and rare genetic disorder potentially affecting entire families.' The film opens with Frederik watching a compilation of videos from his childhood. 'When you're a kid, you've got all these dreams, all these aspirations, these things you want to do. The possibilities are endless,' Frederik says in voice-over. 'I'm not sure I understood all the consequences of PolG when I first got diagnosed. It's more subtle, where slowly, the world is getting smaller and smaller.' Celebrity Deaths of 2025: Aubrey Plaza's Husband Jeff Baena and More Stars We've Lost This Year The film then turned to Emilia and Amelie, two siblings who were diagnosed with PolG. They lost their brother, Philip, to the same disease, in May 2023. He was 20. 'Even to this day, doctors aren't familiar with PolG, and so it makes it really hard to get a proper diagnosis,' Carolyn Sue, a researcher at Neuroscience Research Australia, saYS in another part of the film. The film ended with a powerful statement asking for donations. 'For these PolG kids, it's already too late,' the statement said. 'Today, there is no cure.' 'PolG research will save lives. Please donate,' it included, alongside a QR code for the foundation's donation page. Us Weekly reached out to The POLG Foundation for comment.
