Last year, Duchenne UK commissioned Professor Steve Winder at Sheffield University to investigate a nutraceutical soy product, called Haelan 951.

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 various properties in Haelan 951. He then divided them up into different diets, and compared them to each other and to a placebo group.

The results clearly showed that one of the diets had a significant and positive effect on the mice. See the poster detailing the results here.

Duchenne UK has now asked Professor Winder to validate and extend these findings in a new set of experiments.

We will keep you updated with his progress.

Here is the announcement of the initial project in August 2016:

Duchenne UK is pleased to announce a new research project with Professor Steve Winder in the Department of Biomedical Science at the University of Sheffield.

Earlier this year, Duchenne UK approached Professor Steve Winder to ask him to investigate the mechanism of action of a nutraceutical called Haelan 951. Haelan is a commercially available health drink, made from fermented soy, and is used by some patients in the Duchenne community. 

The drink is expensive to buy, with the recommended dose costing up to £15,000 a year.

The benefit of Haelan 951 in Duchenne muscular dystrophy is entirely anecdotal, with many parents reporting benefit. Yet no scientific study has been conducted into its use for DMD.

This project will test Haelan 951 against two of its most likely active ingredients in cells, and in mouse models of DMD.

Emily Crossley, co-founder of Duchenne UK says;

“Haelen 951 is prohibitively expensive for most families, and its benefits have only been anecdotally reported. We’re trying to seek scientific answers to the questions of if, and why, it may have benefit. Once we have these answers, we may be in a position to look for cheaper alternatives.”

Duchenne UK is investing £75,000 in this 12-month study. The project is part of our pro-active research strategy, to seek treatments for this generation of patients.

Professor Steve Winder says:

“I’m really excited to be working with Duchenne UK to investigate the mechanisms that may underlie the possible benefits of soy products for the treatment of DMD.”