Funding and supporting research remains one of our priorities, and our ultimate goal remains the same: to find treatments and cures for all 60 rare and ultra-rare muscle-wasting conditions.
Here, we’ve rounded up some of the work we have been doing over the past few months to support research…
We could never achieve all that we do by working alone. This week we launched a partnership with a company called Healx to identify potential treatments for FSHD. There are currently no treatments or cures for the condition, which affects an estimated 2,500 people in the UK.
We’re really excited to be collaborating with Healx, which uses AI technology to identify existing drugs that may be repurposed and combined to treat rare conditions. By combining our insights and experience and Healx’s drug discovery expertise, the partnership aims to develop new therapies for the condition – and possibly other muscle-wasting conditions in the future.
As a member of the Association of Medical Research Charities (AMRC), we have supported the group’s calls for research in the sector to be match-funded over the next three years.
Unfortunately, due to coronavirus, we have had to cancel this year’s grant round. We have not taken this decision lightly.
Cancelling the 2020 round will help us to protect the research we are already investing in as far as we possibly can. You can see the projects we have funded in previous years here.
We know how important it is to keep you updated on the latest news in research. We are continuing to update our breaking news in research section, which you can read here. We have also provided updates on the treatments Spinraza and Translarna as well as potential treatments such as Zolgensma and Risdiplam. See more in the news section on our website.