Press releases & statements
- 10 May 2013
New registry holds hope for families devastated by muscular dystrophy Over one hundred people living with a debilitating form of muscular dystrophy which affects entire families will gather today in Northampton to launch a new registry hailed as a major step forward in the search for a treatment for the condition. - 8 May 2013
Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign, in response to Harrison’s Fund advertising campaign Statement by Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign, in response to the Harrison’s Fund advertising campaign - 23 April 2013
Families fear muscular dystrophy care gaps will stop treatments reaching children Relatives of children living with a devastating muscle-wasting condition have gathered in Parliament today to tell of their fears that treatments may never reach them owing to ongoing gaps in specialist care. - 19 April 2013
South Wales' families speak out over teenagers 'let down' on muscular dystrophy care Families from across South Wales have told how teenagers affected by rare and muscle-wasting conditions, are being let down as they move from paediatric to adult NHS care. - 12 April 2013
Response to GlaxoSmithKline’s (GSK) reports that exon-skipping treatment has improved walking ability in a phase IIb clinical trial. Dr Marita Pohlschmidt, Director of Research at the Muscular Dystrophy Campaign, responds to GlaxoSmithKline’s (GSK) reports that exon-skipping treatment has improved walking ability for patients with Duchenne muscular dystrophy in a clinical trial. - 4 April 2013
Young disabled ‘left behind’ by Northern Ireland say trailblazing group Disabled people in Northern Ireland are being separated from friends at concerts, sports events and cinemas, are struggling to move out of home and are unable to socialise spontaneously and without ‘near military planning.' - 20 March 2013
Statement in response to HFEA's findings following its public consultation on mitochondrial transfer IVF Dr Marita Pohlschmidt, Director of Research at the Muscular Dystrophy Campaign, responds to the Human Fertilisation and Embryology Authority's findings, following consultation with the public on mitochondrial transfer IVF. - 26 February 2013
NHS must prepare for pioneering genetic treatments urge rare disease experts The NHS must act swiftly to ensure that cost-cutting, red-tape and poor specialist healthcare do not prevent pioneering genetic medicines reaching those who need them, rare disease experts have warned. - 22 February 2013
New HSC role is ‘turning point’ say couple who lost their son to muscular dystrophy A couple from Bangor, whose teenage son passed away because of a rare form of muscular dystrophy, have spoken of their elation at news today that a health leader has been appointed to fix major gaps in care for those living with the condition. - 15 February 2013
New chapter in film icon’s pledge to defeat cruellest of childhood conditions A fund set up to continue the five decades of work dedicated by British actor and director Lord Richard Attenborough to finding a treatment for devastating muscle-wasting conditions has received its first major donation.
