The funding will be used by the group to fund expanded and enhanced support activities for children and families affected by Duchene muscular dystrophy. It will support parents through diagnosis by employing a nurse/support worker who will work with specialist clinical centres across England to offer immediate support to every family diagnosed without them needing to ask for help. Help families to make informed decisions by offering regional science workshops and online shows to help them understand the illness as well support through mentoring and 1:1 support for young people and their families. The group will also look to enhance it support for end of life care and bereavement for those families experiencing loss as a result of the illness.