MAY 2020: Duchenne UK provided an update to this project, read here.

JULY 2018

Duchenne UK and Joining Jack have granted Professor Steve Winder a further £60,000 to continue to investigate the use of soy products as a treatment for DMD. We have now invested more than £135,000 towards Professor Winder’s investigation.

The first study looked at some of the ingredients in Haelan 951, which is a fermented soy product. Many families reportedly give children with Duchenne Haelan 951, as it is thought to slow down disease progression. But we did not have any scientific evidence to back this up, so that is why we funded the first study with Professor Winder at the University of Sheffield in 2016.

The study compared the effects of Haelan 951, genistein (an isoflavone) and Bowman Birk Inhibitor (BBI) in mdx mice. Genistein and Bowman Birk Inhibitor are both components of Haelan 951. The study showed that the diet supplemented with BBI, significantly improved holding impulse (grip strength). The data revealed no significant benefit of Haelan 951, nor genistein, nor genistein combined with BBI.

Duchenne UK is now funding a further study to enable Professor Winder and his team to carry out a dose-escalation study for BBI. We hope to find out whether BBI displays a dose-dependent effect in slowing disease progression in a DMD mouse model, with the aim of finding the most effective dose. Disease pathophysiology (the impact of the disease on the body) will be measured using histology, biomarkers and muscle performance.  

If this further study shows the same effectiveness that was seen in the first study, the next steps would be to make a submission to TACT (TREAT-NMD Advisory Committee for Therapeutics) for a clinical trial for BBI in DMD.

This month, Professor Steve Winder raised over £4500 for Duchenne UK by taking part in our signature bike ride from London to Paris - the Duchenne Dash. Professor Winder has dedicated the last 25 years of his research career to understanding DMD, and trying to identify ways to treat it. However, 2018 was the first time he has taken part in any fundraising to fund research into the disease and we were delighted that he chose to support Duchenne UK and take part in the Dash.

Professor Winder said on his Duchenne Dash fundraising page:

“So why now? Because now, after those 25 years, I truly believe the DMD research community is on the brink of developing treatments that will really have long lasting impact and improvements for the lives of boys with DMD.”

Emily Crossley, Co-founder of Duchenne UK, said:

“BBI comes from a soy product – this means it is a natural substance and best of all it’s relatively inexpensive. If the further investigations in a clinical trial subsequently show that a soy product can help slow the progression of DMD, then this will offer a potentially accessible, prescription-free supplement for use in the DMD community.”

 Please watch this short video explaining the study:

Further Reading:

The results of the first study were published in PLoS in March: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5889298/

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

Professor Steve Winder’s Duchenne Dash 2018 fundraising page: https://uk.virginmoneygiving.com/SteveWinder

Please get in touch if you have any questions.