our patrons & ambassadors
Our Patrons and Ambassadors add critical weight and credibility to our charity’s continuing drive to be a ‘beacon of hope’ for EDS sufferers by helping make a positive difference to their lives.
Family Patrons
Rt. Hon the lord Malloch-brown KCMG and lady malloch-brown
“We are delighted to be able to support an organisation which is helping those who, in desperate straits, often have no-one else to turn to,” believes Lady Malloch-Brown. ”The nature of the condition can make it very difficult for EDS sufferers and their families on many levels and so the hope and support MB-EDS provides is invaluable.”
Rt. Hon the Lord Mark Malloch-Brown KCMG has striven to advance human rights and justice through his work in international affairs for more than four decades. Key roles during this period have included Administrator of the United Nations Development Programme (UNDP) and Deputy Secretary General of the United Nations and Vice-President at the World Bank. He is currently president of the Open Society Foundations having previously served on the Open Society’s Global Board and co-chairs the Board of Trustees at Crisis Group, an international NGO committed to preventing and resolving deadly conflict.
His early career included spells as a financial journalist and an international refugee worker. Today he is a Distinguished Practitioner at Oxford University’s Blavatnik School of Government and an adjunct fellow at Chatham House’s Queen Elisabeth Program
Lady Trish Malloch-Brown is an independent consultant focusing on environmental, humanitarian, health and design issues. Her current board memberships include The Bobby Jones CSF Foundation, Chair of Bioversity International UK and USA, Alliance Strategy and Program Advisory Council (ASPAC), Barrrow Foundation UK, co/rizom Advisory Board and Denison University Board of Trustees.
She holds a BA in Political Science from Denison University (1986) and a Master of International Affairs from Columbia University (SIPA, 1991) and early in her career worked with The Open Society Institute and The Charities Aid Foundation.
Medical Patron
Professor christopher mathias MBBS, LRCP&S, DPHIL, DSC, FRCP, FMEDSCI
“In treating these conditions it was clear to me even then that a holistic understanding is required, as the very name of Laura’s important new charity, Mind Body EDS, clearly identifies,” he believes. “Doctors, for example, need to understand more about the autonomic elements of EDS that can affect multiple organs and systems, including the brain and the mind. And equally, psychologists, psychoanalysts and psychiatrists if involved need to be more aware of the physical aspects, as an integrated approach is needed for EDS to be adequately recognised, appropriately investigated and effectively treated.”
Professor Christopher Mathias is recognised internationally as a leader in the field of autonomic research and its implementation in clinical practice, with particular interests including orthostatic hypotension and Postural tachyardia syndrome (PoTS): he is also an expert in autonomic dysfunction in a wide range of neurological conditions. He has served on many national and international committees and has more than 400 publications in medical and scientific journals on the autonomic nervous system. He founded the international journal, Clinical Autonomic Research in 1991, the leading journal in the field. Professor Mathias is a founder Trustee of the Autonomic Charitable Trust (ACT), whose key missions are increasing awareness and recognition of autonomic disorders and improving their diagnosis and treatment. Since 2018 he has been Chair of the Autonomic Group of the Ehlers-Danlos International Consortium, Ehlers-Danlos Society.
Professor Mathias qualified with an MBBS from St John’s Medical College Bangalore University in 1971 and in the following year was awarded a Rhodes Scholarship to Oxford University. More recently, he was Professor of Neurovascular Medicine in the University of London from 1991-2013 and since 2014 has been Professor Emeritus at University College London.
ambassadors
Ashleigh Harley
“I’m hugely excited to be able to collaborate with MB-EDS in this ambassadorial capacity. As a patient and a family suffering from this invisible but devastating illness we are totally aligned with the goals of this dynamic charity. I believe this collaboration will add valuable weight and gravitas in our campaign to achieve greater public awareness of the issues around EDS across a broad range of media channels.”
Asheligh Harley is a young award-winning film-maker, musician and EDS sufferer, Ashleigh Harley is the first Ambassador for Mind Body EDS. Ashleigh’s family first became aware that she had EDS when she was 12, but her symptoms were not officially diagnosed until several years later. She wrote her first novel, The Messenger, when episodically paralysed in hospital and subsequently directed a related fantasy film, The Wall of Lyon (www.ashleighharley.com/the-wall-of-lyon), which was showcased at the Cannes Film Festival and won over 40 awards internationally, including a BAFTA Cymru.
Working with Oscar-winning production team, Slick Films, and with support from MB-EDS, Ashleigh’s latest film ‘The Dark Horse’ documents her journey living with EDS and her mission as a keen horsewoman to get show jumping included in the World Paralympic Games. Due for release in 2021, the film will also feature MB-EDS founder Laura Sylvester’s own EDS story and, as with The Wall of Lyon, will be presented at film festivals and screenings around the world.