11 episodes

A podcast series brought to you by Duchenne UK, providing information about Duchenne muscular dystrophy and how we are fighting to find a cure to END DUCHENNE.

Decoding Duchenne A podcast series brought to you by Duchenne UK

    • Health & Fitness
    • 5.0, 16 Ratings

A podcast series brought to you by Duchenne UK, providing information about Duchenne muscular dystrophy and how we are fighting to find a cure to END DUCHENNE.

    11. Duchenne UK Family Funds

    11. Duchenne UK Family Funds

    We know that the people who are most passionate about raising money to find treatments and a cure for Duchenne Muscular Dystrophy are those who live with it every day.

    That's why we at Duchenne UK want to help and support you - the friends and families of those living with DMD - with raising the money to accelerate treatments and to find a cure.

    When you set up a family fund, we ring-fence the money you raise for your fund and then let you decide which research projects you want to support. Every pound you raise will be invested into research.

    • 9 min
    10. Repurposing Drugs for DMD

    10. Repurposing Drugs for DMD

    Repurposing is an exciting approach to drug development; it involves looking at existing medicines, and testing them to see if they could be effective in treating Duchenne Muscular Dystrophy.

    Our host Clare Runacres speaks to Emily Crossley, Duchenne UK Co-founder, and Professor Dirk Fischer, from UKBB, the University Children’s Hospital in Basel, Switzerland about the work we are doing on repurposing medicines.

    If you have any questions or would like to get in touch please email support@duchenneuk.org or visit www.duchenneuk.org

    • 12 min
    9. Growing Up With DMD - Saul Catlin

    9. Growing Up With DMD - Saul Catlin

    Our host Clare Runacres speaks to Saul Catlin about growing up with DMD. Saul is an 18 year old man living with DMD. He is studying games design at university.

    If you have any questions or would like to get in touch please email support@duchenneuk.org or visit www.duchenneuk.org

    • 14 min
    8. The DMD Hub - Alex Johnson, Emily Crossley, Prof Volker Straub and Emma Helsop

    8. The DMD Hub - Alex Johnson, Emily Crossley, Prof Volker Straub and Emma Helsop

    Our host Clare Runacres speaks about the DMD Hub with Prof Volker Straub - Professor of Medicine and Professor of Neuromuscular Genetics at Newcastle University, Emma Heslop - DMD Hub manager and Duchenne UK's co-founders Alex Johnson and Emily Crossley.

    Visit dmdhug.org

    If you have any questions please email support@duchenneuk.org

    • 12 min
    7. What Is Duchenne - Dr David Bull

    7. What Is Duchenne - Dr David Bull

    Our host Clare Runacres speaks with Duchenne UK's Director of Research, Dr David Bull, about Duchenne muscular dystrophy.

    If you have any questions please email support@duchenneuk.org.

    • 26 min
    6. SPECIAL EPISODE - Testosterone as a treatment for DMD with Prof Volker Straub

    6. SPECIAL EPISODE - Testosterone as a treatment for DMD with Prof Volker Straub

    In this podcast we speak with Prof Volker Straub about Testosterone, which is sometimes given to patients with Duchenne Muscular Dystrophy (DMD) who take steroids.

    Steroids are part of the recognised standard of care in treating Duchenne Muscular Dystrophy (DMD). But long-term use of steroids causes a number of side effects including delayed puberty. Testosterone is sometimes given to make boys begin going through puberty.

    There is a clinical trial running at the John Walton Muscular Dystrophy Research Centre (JWMDRC), led by Prof Volker Straub and Dr Claire Wood, treating 15 adolescents with DMD with testosterone to induce puberty. As well as looking at the effect of testosterone on pubertal development, growth, muscle strength and function, bone mineral density and body composition, the trial is looking at the mood, quality of life and well-being of patients to assess their satisfaction with the benefits of the treatment compared to the side effects.

    Duchenne UK has granted £228,562.51 to pay for the extension study of this trial to look at the longer term effects of testosterone treatment following earlier treatment to induce puberty. The extension study will investigate whether testosterone treatment to induce puberty will be enough to support long term testosterone production, or whether further treatment with testosterone is needed for patients on long-term steroids to keep producing testosterone, even if puberty was successfully induced.

    • 12 min

Customer Reviews

5.0 out of 5
16 Ratings

16 Ratings

Ben M-D ,

Decoding Duchenne

Obviously this is invaluable for anyone touched by this terrible disease. But I’d recommend this podcast for “neutrals” as it tells the story of two amazing women who are changing the game for everyone with Duchenne.

CJDUKtrustee ,

Heartfelt and human introduction to Duchenne diagnosis

Clare Runacres is calm and caring as she introduces Emily Crossley and Alex Johnson mothers and charity pioneers of Duchenne UK. A must listen to anyone affected by Duchenne Muscular Dystrophy, recommended for family and friends of newly diagnosed families as well S anyone living with this disease on their life.

Top Podcasts In Health & Fitness