Latest news with #POLGFoundation
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
12-03-2025
- Entertainment
- Yahoo
Director opens up on ‘painful' experience of working with Luxembourg's Prince Frederik before his death
Director Mei Fa Tan spoke out about her experience working with the son of Prince Robert of Luxembourg and Princess Julie of Nassau, Prince Frederik, after he died last week at the age of 22. Frederik tragically died of POLG Mitochondrial disease, a rare disorder he was diagnosed with eight years ago. His death was announced by his dad Robert on March 7 in a lengthy message online. With tributes to the late royal pouring in, Tan spoke to Us Weekly about the time she spent working with Frederik. '[He was] so interested in so many topics. He would love to talk about basically anything,' she told the outlet. '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.' In Robert's heartbreaking message about his son's death, he opened up about Frederik's diagnosis and explained that its symptoms aren't easy to detect from an early age. He wrote: 'Frederik was diagnosed with POLG at the age of 14, when his symptoms were showing more clearly and when the progression of his disease had become more acute. 'Because POLG disease causes such a wide range of symptoms and affects so many different organ systems, it is very difficult to diagnose and has no treatments, much less a cure.' POLG Mitochondrial disease is described as 'a genetic disorder that robs the body's cells of energy, in turn causing progressive multiple organ dysfunction and failure' on the POLG Foundation website. The condition is very 'uncommon' and the symptoms, which are hard to spot, include liver failure, muscle weakness, and epilepsy. As a young person with POLG Mitochondrial, Frederik sought to raise awareness by creating an official foundation, encouraging new research and widespread fundraising efforts. Robert's statement went on to describe Frederik's unwavering positivity and commitment to happily living each day without letting the disease control more of his life. Tan met Frederick when she was commissioned to direct the foundation's short film, The PolG Foundation Film. 'This is the battle that Frederik fought, and this is the burden that he had to carry throughout his life. He always did so with grace and with humour,' Robert wrote. 'When we asked him if he wanted to create a foundation to find a cure and help others like him, he jumped at the opportunity. 'Though he always made it very clear that he did not want this dreadful disease to define him, he nonetheless immediately identified with and helped define the mission of The POLG Foundation.' Frederik was able to star in the organization's first production, The PolG Foundation Film, before he died, for scenes of him watching his own childhood videos. 'When you're a kid, you've got all these dreams, all these aspirations, these things you want to do. The possibilities are endless,' he said in the film's voiceover. '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.'
The Independent
11-03-2025
- Entertainment
- The Independent
Who was Prince Frederik of Nassau? Tributes to ‘superhero' Luxembourg royal who died aged 22
Tributes have been paid to Prince Frederik of Nassau, who has died aged 22 in Paris from a genetic disease. A statement from his family after his passing said the young Luxembourg royal had 'a special capacity for positivity, joy, and determination'. Luxembourg described his son's brief life as a 'short and beautiful existence'. Below we look at what we know about the late prince. Born on 18 March 2002 in Aix-en-Provence in France, Frederik spent the first two years of his life living in England. He moved to Switzerland in 2004, first to Geneva and then to the Canton of Vaud. His father is the reigning Grand Duke's first cousin; his mother, Boston-raised Princess Julie of Nassau (née Ongaro). Known as 'the human jukebox' to his brother Prince Alexandre, Frederik had a love of the arts. As well as music, his passions included film, television, gastronomy, nature, fossils and minerals, learning Italian, photography and art. On 26 July, 2016, 14 year-old Frederik was diagnosed with PolG, a genetic condition that impacts energy production. "In our family, there exists life before July 26th, 2016 and life after,' his parents said. Speaking out about his condition in his organisation's short film, Frederik said: '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.' After being diagnosed, Frederik and his family became committed to advancing scientific research in hope of one day finding treatments for PolG. He participated in medical trials and cell lines in Switzerland, the United States and America to advance treatment research and as a potential way of repurposing molecules to help other PolG patients. He was also actively followed by medical practitioners across Europe and North America but was mainly treated by the Necker Children's Hospital, The Imagine Institute, and the Beaujean Hospital in Paris. Together with his parents, he launched the POLG Foundation in 2021, where he played a key role as creative director. As part of this, Frederik designed the Happy MITO clothing line to bring light humour to the daily struggles of living with his disease and to help others 'remain positive and happy' with playfulness and colour. Despite living with a disease that sapped energy from his body, his family described him as living with humour and boundless compassion right up until his last moments. 'Frederik found the strength and the courage to say goodbye to each of us in turn – his brother, Alexander; his sister, Charlotte; me; his three cousins, Charly, Louis, and Donall; his brother-in-law, Mansour; and finally, his Aunt Charlotte and Uncle Mark,' Prince Robert wrote on the Foundation's website. 'He had already spoken all that was in his heart to his extraordinary mother, who had not left his side in 15 years. 'After gifting each of us with our farewells – some kind, some wise, some instructive – in true Frederik fashion, he left us collectively with a final long-standing family joke. 'Even in his last moments, his humour, and his boundless compassion, compelled him to leave us with one last laugh….to cheer us all up.' 'Frederik was born with a special capacity for positivity, joy, and determination. When he was little, I would always say that if there is one child of ours that I would never need to worry about, it was him,' the Prince added.
Yahoo
11-03-2025
- Entertainment
- Yahoo
Royal Family Member Dead at 22 From Rare Disease
Prince Frederik—the son of Prince Robert of Luxembourg, the first cousin of , the current ruler of Luxembourg—died at the age of 22 in early March after living with PolG mitochondrial disease all his life. The sad news was announced by Robert in a blog post on the website for The POLG Foundation, a nonprofit foundation founded by Frederik's family after his diagnosis in 2016. 🎬 🎬 "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," began the message. "Last Friday, February 28th, on 'Rare Disease Day', our beloved son called us in to his room to speak to him for one last time." Robert recalled Frederik's emotional goodbyes to himself, his brother Alexander, his sister Charlotte, his cousins and more family members, noting, "He had already spoken all that was in his heart to his extraordinary mother [Julie], who had not left his side in 15 years." He went on to share Frederik's last question to him, "Papa, are you proud of me?" with Robert sharing, "The answer was very easy, and he had heard it oh so many times…. but at this time, he needed reassurance that he had contributed all that he possibly could in his short and beautiful existence and that he could now finally move on." Calling his son "my Superhero," Robert said, "Frederik fought his disease valiantly until the very end. His indomitable lust for life propelled him through the hardest of physical and mental challenges. Our cheery Frederik saw the beauty in everything." Frederik died on March 1, in Paris, France. A fan page for the Luxembourg royal family also shared the news of his death and part of Robert's tribute on social media. View the to see embedded media. The blog post shared details about Frederik's illness, noting that he lived his whole life with the disease despite the late diagnosis. According to the organization's website, PolG mitochondrial disease is "a genetic disorder that robs the body's cells of energy, in turn causing progressive multiple organ dysfunction and failure." Currently, the condition is "very difficult to diagnose and has no treatments much less a cure." The POLG Foundation is working to find therapies, treatments, and hopefully a cure to help those suffering from the disease. Next:
South China Morning Post
10-03-2025
- Health
- South China Morning Post
Who are Princess Charlotte and Prince Alexandre of Nassau, who just lost their brother Frederik? The Luxembourg royals are mourning the death of their sibling, and will carry on his NGO work
Prince Frederik of Luxembourg, the youngest son of the Prince and Princess of Nassau, has died after a long battle with POLG mitochondrial disease, a rare genetic disorder. The 22-year-old's death was announced by his family on March 7 on the POLG Foundation website, started by Frederik in 2022. '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,' his father, Prince Robert of Luxembourg, wrote. Advertisement His family said Prince Frederik 'fought his disease valiantly until the very end'. Photo: @polgfoundation/Instagram 'Last Friday, February 28, on 'Rare Disease Day', our beloved son called us in to his room to speak to him for one last time. Frederik found the strength and the courage to say goodbye to each of us in turn – his brother, Alexandre; his sister, Charlotte; me,' the bereaved father continued. 'He had already spoken all that was in his heart to his extraordinary mother, who had not left his side in 15 years.' According to the foundation's website, POLG mitochondrial disease 'is a genetic mitochondrial disorder that robs the body's cells of energy, in turn causing progressive multiple organ dysfunction and failure'. 'Frederik's last question to me, before his other remarks, was: 'Papa, are you proud of me?' He had barely been able to speak for several days,' the heartfelt statement continued. The late Prince Frederik (left) and his siblings, Princess Charlotte and Prince Alexandre. Photo: @polgfoundation/Instagram 'As his siblings and most anyone who ever met him say, 'Frederik is the strongest person that we know!' Frederik fought his disease valiantly until the very end.' Here's everything to know about the late prince's older siblings, Princess Charlotte and Prince Alexandre. Who is Princess Charlotte of Nassau?
