The Muscular Dystrophy Campaign is a funder of world-class research into FSHD and other types of muscular dystrophy and related neuromuscular conditions. Our research programme focuses on eight strategic themes defined in our research strategy as we seek to drive research from bench to bedside. Applications are assessed by a rigorous peer review system and by our Lay Research Panel to ensure that only the best research relevant to people with the condition is funded.
We have recently funded FSHD work in the laboratories of Professor Jane Hewitt at Nottingham University and Professor Peter Zammit at Kings College London. These projects aim to increase understanding of the genetic mutations which cause FSH, and to investigate the role that muscle stem cells may play in the condition.
We remain committed to funding FSHD research as we work with the FSHD community in seeking effective treatments for this condition.
Information and advocacy support for all those living with FSHD
Our advocacy team is here to fight for anyone affected by FSHD who is experiencing difficulties accessing the services, benefits or equipment they are entitled to. Since the advocacy service launched in 2011, we’ve secured approximately £1.6million worth of support. We are willing to look at any case put in front of us, for example, getting an appropriate care package, applying for housing adaptations or access to specialist health care services. The advocacy team also offers free advocacy, support and advice to anyone who is experiencing difficulties with their local services.
We have recently launched a new network of Advocacy Ambassadors, who are all affected – directly or indirectly – by a neuromuscular condition and have knowledge and personal experience of navigating social and health services. Several Ambassadors have FSHD and they are on hand to assist others trying to secure support essential to healthcare, independence and quality of life.
The MDC has developed a national network of muscle groups and branches whose members are influential in driving health care improvements and the introduction of new clinical services and people with FSHD are involved in these groups. We also have a national initiative known as the Trailblazers who are a group of younger disabled activists campaigning for barriers in society to be removed. The Trailblazers develop and lead campaigns to target discriminatory practices in the provision of services and they put their views themselves directly to politicians, corporate chiefs and in the media. Many young people with FSHD are active members of the Trailblazers network.
We provide information regarding FSHD and its diagnosis, symptoms and clinical management in both print and digital formats. Information can be accessed and downloaded from our website – www.muscular-dystrophy.org . We also provide grants to help meet the cost of equipment and wheelchairs for those with FSHD.
Our services are provided free of charge so if you are having problems in getting the care and support you are entitled to, please contact us on (00 44) 20 7803 4800. Alternatively, you can contact us by email at firstname.lastname@example.org.