Facioscapulohumeral muscular dystrophy (FSH) is the third most common muscular dystrophy affecting over 1,300 people in the UK (and at least 140,000 worldwide). There is currently no treatment or cure for this condition.

Over the last five years, Muscular Dystrophy UK has invested more than £180,000 to help fund research that has helped to pinpoint the location of the mutation causing FSH. It is essential to understand fully the underlying cause of FSH and how it can progress, in order to develop future treatments and cures.

Thanks to individual donors and family fundraising, the Action on FSH Appeal has raised £33,000 since its launch in 2013. We are extremely grateful to all supporters for raising these funds, enabling progress to be made in two important research projects (one in its final year) and in establishing the FSH patient registry.

Funding high quality research

Professor Peter Zammit, King’s College London, recently completed a four-year PhD studentship exploring the role of muscle stem cells in the progression of FSH. To ensure that we fund only the highest-calibre clinicians and most promising research, all applications for PhD studentships and Clinical Research Fellowships are subject to our standard assessment process.

Funding FSH patient registries

Muscular Dystrophy UK has been working with TREAT-NMD to set up a FSH patient registry. The establishment of patient registries is vital as they focus on the information that is needed to find patients eligible for clinical trials and help clinicians develop care standards. Patients can link to the research community and have the opportunity to access information directly relevant for their condition.

Supporting the Appeal

For the year ahead we are seeking the final £11,000 to complete Professor Peter Zammit’s research project – led by a Muscular Dystrophy UK-funded PhD student – along with the annual cost of the FSH registry of £25,000 – a total target for the Action on FSH Appeal of £36,000 in 2014. You can help us by making a donation.

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