High-profile appointments “add critical weight and credibility” to charity’s mission to increase awareness and advocacy of Ehlers-Danlos syndromes (EDS)
March 2021: Following the announcement of award-winning film-maker, showjumper and EDS sufferer, Ashleigh Harley as its first Ambassador, Mind Body EDS™ (MB-EDS) has made two further key appointments in its drive to build greater awareness and understanding of Ehlers-Danlos syndromes (EDS) across both the medical profession and broader UK public.
Family Patrons
Lord Mark and Lady Trish Malloch-Brown have joined MB-EDS as Family Patrons. Lord Malloch-Brown’s renowned work in the field of human rights and justice has included Administrator of the United Nations Development Programme (UNDP) and Deputy Secretary-General of the United Nations and Vice-President at the World Bank. Lady Malloch-Brown is similarly committed to humanitarian, environmental, education and health issues, with current Board memberships including The Bobby Jones CSF Foundation and Barrow Foundation UK, the international education and fund-raising arm of the Barrow Neurological Institute.
“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.”
In response, MB-EDS founder Laura Sylvester, whose own EDS condition went undiagnosed for 10 years, says, ”the concept of ‘Family Patron’ is perhaps less common, but fits perfectly our relationship with Lord and Lady Malloch-Brown. Their high profile, wide-ranging experience and passionate commitment will prove invaluable in helping us build awareness and support for the charity’s objectives in new areas.”
Medical Patron
At the same time, Professor Christopher Mathias has taken on the role of the charity’s Medical Patron. A world-leading expert on the Autonomic Nervous System (ANS), Professor Mathias is particularly interested in the link between the physical and neurological aspects of EDS.
“I first came into contact with Mind Body EDS founder Laura Sylvester and fellow patients of Dr Rodney Grahame, the international expert on hypermobility, some 20 years ago as a result of our observations that many patients with ANS dysfunction and especially Postural tachycardia syndrome (PoTS) had joint hypermobility,” recalls Professor Mathias.
“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.”
“Though we are not a medical charity, linking with Professor Mathias in this way is a powerful demonstration of our intent,” Laura confirms. “His global reputation, commitment to pioneering research and expertise in the area of EDS and associated conditions is almost unequalled and will help raise our profile and credibility within the medical community, expand our reach to EDS patients who need our help and keep us well-informed as regards the current status of medical knowledge on EDS.”
Fundraising, awareness and advocacy
“As with other charities, raising money to support individual EDS sufferers is currently a tough challenge,” says Laura. “However, when we launched our charity we were equally clear as to the desperate need for greater advocacy in medical schools, for example, increasing public awareness more broadly and encouraging research for a cure for these debilitating and potentially fatal connective tissue disorders.
“Having Lord and Lady Malloch-Brown and Professor Mathias on board is hugely exciting for the charity,” she confirms, ”as their international stature adds critical weight and credibility to our continuing drive to be a ‘beacon of hope’ for EDS sufferers by helping make a positive difference to their lives.”
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FOR MORE INFORMATION PLEASE CONTACT:
Graham Noakes, Media Co-ordinator Trustee at Mind Body EDS™
Mobile: +44 7788 846149 Email: graham.noakes@mindbodyeds.org.uk
Mind Body EDS™ Charity Details
Address: 11 South St, Farnham, Surrey, GU9 7QX
Website: www.mindbodyeds.org.uk
Mind Body EDS™ is a registered charity in England and Wales | Registered Charity No. 1177182
Social Media
Email: info@mindbodyeds.org.uk Instagram: @mindboyeds Twitter: @mindbodyeds
NOTES TO EDITORS
About Lord and Lady Malloch-Brown
Lord Mark Malloch-Brown 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.
About Professor Christopher Mathias, MBBS, LRCP&S, DPHIL, DSC, FRCP, FMEDSCI
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.
About Mind Body EDS™
Formed in 2018, Mind Body EDS™ is aimed at raising awareness amongst the public and medical community about the range of Ehlers-Danlos syndromes (EDS). Its goals include providing financial support to individuals and families to enable effective early diagnosis and treatment, as well as towards EDS research. EDS is a group of genetic conditions affecting the body’s connective tissue resulting from collagen defects. Collagen essentially acts as a ‘glue’ keeping the body from falling apart and is responsible for supporting the skin, tendons, muscles, ligaments, blood vessels, bones, eyes and vital organs and therefore affects the entire body. Common symptoms are: dislocations/subluxations of joints, chronic pain and fatigue, easy bruising, aortic and/or organ ruptures, palpitations, digestive disorders and other comorbidities. For more information, please visit www.mindbodyeds.org.uk
About the Founder
Laura Sylvester, 28, lives in Tilford, Surrey. Her medical symptoms went unrecognised for more than a decade until 2014, when she was diagnosed as having Ehlers-Danlos syndrome (Hypermobility, hEDS), together with a number of other comorbidities. Over this period her condition deteriorated substantially and, with no specialist treatment available in the UK, she had to go to the USA for urgent life-saving surgery. Since then, Laura has undergone a total of seven brain and spinal operations in less than two years and treatment is ongoing.
To see a three minute video on Laura’s EDS journey - ‘The Invisible Illness’ - visit: www.youtube.com/watch?v=p62T1a7E9K4&t=20s
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