Decoding Duchenne

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.

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 [email protected] or visit www.duchenneuk.org

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 [email protected] or visit www.duchenneuk.org

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 [email protected]

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 [email protected].

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.

In this episode Dr David Bull gives a breakdown about how clinical trials work. This was recorded at our Patient Information Day in September 2018. We host free patient information days twice a year. Please join us at our next information day on Saturday 16th March 2019 at Guy’s Hospital in London.

In this weeks episode of Duchenne UK's DECODING DUCHENNE podcast series, our host Clare Runacres interviews Lisa Kuhwald and Alex Johnson, whose son's both have Duchenne, about the time of diagnosis. Alex Johnson is one of the co-founders of Duchenne UK. Earlier this year, Lisa joined Duchenne UK in a voluntary role as Patient Advocacy Officer.

In this weeks episode of Duchenne UK's DECODING DUCHENNE podcast series, our host Clare Runacres speaks to Emily Crossley, Fleur Chandler and Josie Godfrey about Project HERCULES.

​​Project HERCULES is a collaborative global project set up by Duchenne UK to increase the chances of patients with Duchenne Muscular Dystrophy (DMD) of accessing innovative treatments. It brings together pharmaceutical companies to develop and build a better evidence base to help support their case for the pricing and reimbursement of new treatments for DMD

This is a special episode featuring Andy Farrell OBE, recorded at Duchenne UK's rugby dinner in September. Andy talks with our host Clare Runacres about his involvement with the charity.