Coventry, UK

Matty Ellison is a member of a family affected by Huntington’s disease. He has volunteered a huge amount of his time to help the Huntington’s Disease Association, in England, with a number of projects, and has also organised several fundraising events for the HDA over the past few years. Matt’s main passion is improving support and providing more information for young people from families affected by Huntington’s disease. He was invited onto the Euro HD Network’s Young Adults Working Group in 2009 and has been an active member ever since. Matt is currently working hard on creating the Huntington’s Disease Youth Organisation (HDYO), which is a place for young people worldwide to receive support, and is set to launch late 2011. Matt is studying for a Childhood and Youth Studies degree.