The podcast series Take on Duchenne

Philip Højgaard-Olsen, born and raised in Sidney, Australia, moved to Denmark in his late teens eager to live a more independent life despite having Duchenne muscular dystrophy. In Denmark, he was foremost inspired by the way they accessed their own living, apartments, and vehicles to move around. The Egmont Høiskolen played an important role opening his eyes to possibilities.

In this episode Philip shares his thoughts about challenges in life and how to approach problems with a different lens.

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Listen to Sigge, 16, and his dad Martin Stengård, who talk about how Sigge has developed from being introvert and scared of being outside his comfort zone, to quite the opposite. Step by step he has increased his confidence through online gaming. Today, Sigge is one of the members of the unique para-esport team “ParaGhost”, and Martin is the manager. The team has 5 members – all living with DMD – a manager (Martin) and a coach. From being quite isolated, today Sigge has the courage to be very active and can easily present for hundreds of people! Gaming has been very beneficial to Sigge, also thanks to his dad’s involvement in ensuring a safe gaming environment. The presence of an adult/a parent, to moderate the discussions is something Martin strongly advice.

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In this episode you will meet Tim Dalsgaard Pedersen, 28 years old from Denmark. He participated in the Danish Power Chair Hockey Team winning the World Championships in Switzerland 2022. Tim received the diagnosis of Duchenne muscular dystrophy at the age of five. Today, he is passionate about fitness and works as a personal coach. Tim believes that sports and a positive mindset are important for a good quality of life, to be aware and actively choose what is good for your mind and body.

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In this episode you will meet a fantastic woman from Iceland, Hulda Björk Svansdóttir. She is not only a mother of a son, living with Duchenne muscular dystrophy, but also an influencer advocating for DMD through “Friday Fun – Dancing for Duchenne”. She and her son Ægir are dancing with different people, organizations, and families from all over the world and posting it on social media every Friday to raise awareness about the disease. They even danced with the prime minister of Iceland! Listen to Hulda’s story about when she first understood her son is suffering from the disease and her way of finding purpose and meaning in spreading hope and joy to raise awareness.

This podcast episode is recorded in connection to the World Duchenne Awareness Day (WDAD) which occurs on September 7 each year. This year’s topic is Women and Duchenne.

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In this episode, Dr. Saskia Houwen, paediatric rehabilitation physician from the Netherlands, talks about the challenges boys with Duchenne muscular dystrophy (DMD) may face as they become young adults. The transition from paediatric to adult care is one of them, when the boys typically assume responsibility for the coordination of their own care. Dr. Houwen talks about the need for flexibility in the transition phase and the importance to start this process early to help the boys build their independence. Her wish is for boys with DMD to dream big; but they must make known and seek support to address the challenges in all areas of their lives to make their dreams reality.

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In this episode we meet three young, fantastic men who all live with Duchenne muscular dystrophy, and who, by following their interests, have developed exciting lives and careers. Björn Jönsson is self-employed with a strong commitment to the Swedish Foundation for Muscular Dystrophy Research, among other causes. He also works with gaming development under the motto that entertainment should be for everyone. We go to Reykjavik in Iceland, where Guðjón Reykdal Óskarsson, a researcher in his own disease - Duchenne muscular dystrophy, talks about how he came to the conclusion that rare disease research is exactly what he wanted to do. Finally, we also get to meet Benni Over, an ambassador for orangutans who received the Order of Merit from the ministry of Rhineland-Palatinate, and is raising funds for a “reforestation project” in Indonesia. Benni also wrote a book for children.

This podcast episode is recorded in connection to the World Duchenne Awareness Day (WDAD) which occurs on September 7 each year.

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In this episode, Robert Steen from Norway is sharing some of the learnings he made with his son Mats, who lived with Duchenne muscular dystrophy. Mats mostly sat in his basement apartment behind rolled down curtains and played computer games until late at night. To the great sorrow of his parents, he isolated himself and did not want to go out to meet people. After Mats passed away at the age of 25, the parents found out that he had had a very rich social life in the gaming world. This was a wake-up call for them.

In this podcast, we are invited to an area of life that many parents are not aware of. The virtual gaming life. At the funeral of Mats’, the family got to meet some of his closest friends for the first time. Friends that had not only been very meaningful in Mats’ life, but he had also been an important person in their lives, in a world where disabilities and age do not exist.

In this episode, you'll meet two of the most distinguished researchers in the field of DMD, Professor Annemieke Aartsma-Rus from the Netherlands and Assistant Professor Luca Bello from Italy. They talk about the importance of awareness and how international collaboration can find ways to detect the diagnosis earlier. You´ll also meet Professor Már Tulinius from Sweden.

This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.

In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the interviews are made by Merja Metell Suomalainen. The podcast has been produced with financial support from PTC Therapeutics.

In this episode, you'll meet two of the most distinguished researchers in the field of DMD, Professor Annemieke Aartsma-Rus from the Netherlands and Assistant Professor Luca Bello from Italy. They talk about the importance of awareness and how international collaboration can find ways to detect the diagnosis earlier.

This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.

In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the interviews are made by Merja Metell Suomalainen. The podcast has been produced with financial support from PTC Therapeutics.

In this episode, Malin Kvarnung, MD and PhD, from Sweden, talks about genetic diagnosis and genetic testing. You´ll also meet Professor Már Tulinius from Sweden.

This is a podcast about Duchenne muscular dystrophy, a genetic, progressive disease, mainly affecting boys. Every year, 10 boys in Sweden are born with Duchenne. The earlier you find out, the better the prognosis.

In this podcast series, you will meet different experts on DMD. The podcast is produced by Comma and the interviews are made by Merja Metell Suomalainen. The podcast has been produced with financial support from PTC Therapeutics.