• Soy product Haelan 951 showed no difference to the control group
  • Diet containing Bowman Birk Inhibitor, BBI, showed significant improvement in mice grip strength to the control group
  • Results of the study published today in PLOS Currents

In August 2016 Duchenne UK commissioned Professor Steve Winder at The University of Sheffield to investigate a nutraceutical soy product called Haelan 951, as a treatment for Duchenne muscular dystrophy.

Haelan 951 has been popular with some DMD families as a perceived way of slowing down disease progression. It has a very unpleasant taste and is expensive. It has never been tested in clinical trials, and the only evidence for its effectiveness is anecdotal.

Prof. Steve Winder carried out a study in mice which looked at the most likely active ingredients in Haelan 951. He then divided them up into different diets, and compared them to each other, to Haelan 951 and to a placebo group.

Halean 951 contains a protease inhibitor called BBI and isoflavones such as genistein. The experiment compared a diet with Haelan 951 added, to a diet with only BBI added, or a diet with only isoflavones added, and a fourth diet with both BBI and isoflavones added. The results showed that the diet containing Bowman-Birk protease inhibitor (BBI) was the only one to show a significant improvement in holding impulse (grip). This was greatest at 8 weeks though it was still significantly improved at 12 weeks. All other dietary additions; Haelan 951, isoflavones and isoflavones plus BBI, were not significantly different from each other or from the control.

Duchenne UK is now funding a further study to enable Prof. Steve Winder and his team at The University of Sheffield to carry out a follow-on study to test the hypothesis that BBI has a dose-dependent effect in improving holding impulse (effectively grip strength).

The new study is designed to investigate whether BBI has a dose-related effect and determine a fuller time course (testing every two weeks for ten weeks). The study will also look at any dystrophic changes in the muscle of these mice once the trial is complete.

We would like to thank Professor Steve Winder and his team in the Department of Biomedical Science at The University of Sheffield for their work on this project.

If you have any questions about this study please email: [email protected] and we will then prepare an update for the community. 

We are delighted that Professor Steve Winder will be taking part in the Duchenne Dash this year! To sponsor him please visit: https://uk.virginmoneygiving.com/SteveWinder

 

FURTHER READING:

The results of this study have been published in PLOS:

Marston G, Winder SJ. Are soy products effective in DMD?. PLOS Currents Muscular Dystrophy. 2018 Feb 6 . Edition 1.  http://currents.plos.org/md/article/md-18-0004r1-are-soy-products-effective-in-dmd/

You can view Prof. Steve Winder’s poster detailing the results here:  https://www.duchenneuk.org/Handlers/Download.ashx?IDMF=84fbb807-4dff-43f5-be5c-b977b0718979

ENDS   -

NOTES TO EDITORS

About Duchenne Muscular Dystrophy (DMD)

  • There are around 2,500 boys affected by DMD in the UK and around 300,000 worldwide. It is classified as a rare disease
  • Duchenne Muscular Dystrophy is the most common fatal genetic disease diagnosed in childhood, almost exclusively affecting boys
  • Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. There is no treatment or cure

About Duchenne UK 

  • Duchenne UK is a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy (DMD). Duchenne UK has raised more than £5.5million in five years, and spent or committed £5million to DMD research projects – more than any other organization
  • Duchenne UK is leading the drive towards the efficient repurposing of existing medicines to bring new treatments for DMD
  • Duchenne UK believes that every child with Duchenne should be given the opportunity to access a clinical trial. Duchenne UK created the DMD Hub in 2016 to expand and develop the infrastructure for DMD trials in the UK and accelerate access to clinical studies for those who are interested in participating
  • The charity has been formed by the coming together of Joining Jack and Duchenne Children's Trust, the two biggest funders of research in the UK in the last three years. Its president is HRH The Duchess of Cornwall. Its patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell

Visit duchenneuk.org for more information or follow @DuchenneUK on Twitter.

Contact or more information and interview requests: Molly Hunt, Communications Manager: [email protected]