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Lady Julia Carter JP spent her professional life in higher education both as an academic researcher and lecturer and also as an administrator developing the opening up of new routes into higher education for non-traditional adult students. Julia has also spent time working on inner city problems such as homelessness and unemployment.

She served on the Board of HMP Wandsworth and was, for twenty years, a Magistrate in central London. Alongside her work as a Trustee at she was also Chair of Capital Housing, a London-based homelessness charity and School-Home Support (SHS), a national organisation supporting children with domestic problems. Julia was diagnosed with myelopathy in 2016. She is fortunate to still have enough energy to be able to enjoy walking her dog and looking after her four grandchildren. She lives in London with her husband who is a member of the House of Lords.

Dr Johann Graggaber - TrusteeJohann lives and works in Cambridge where he is a consultant physician specialising in acute internal medicine at Addenbrooke’s Hospital. In addition to his other commitments he is more than happy be a trustee of a charity helping to advance the understanding and treatment of this under-recognized condition.

Weslie Janeway - trusteeWeslie is an investor, author, philanthropist and scientist based in New York, USA and Cambridge, UK. While pursuing a career in financial services, she has served in a variety of non-executive roles in the not-for-profit sector, such as Treasurer of Cancer Care, Inc., a social services agency for cancer patients and their families, Board Trustee and Chair of the Development Committee of the New York Women’s Foundation and Vice Chair and Head of the Nominating and Governance Committee of The Jackson Laboratory, a genetics institute based in Maine, USA.

At present, as well as being a Trustee for Weslie is also a Trustee of The Rockefeller University in New York and an Independent Director of the New York Genome Center.

Weslie is a graduate of both Columbia University in New York and Brown University in Rhode Island. Additionally, she has studied genetics at the University of Cambridge as well as in New York. She is also a Chartered Financial Analyst and the co-author of Mrs. Charles Darwin’s Recipe Book.

Mark is an academic Spine and Neurosurgeon at The University of Cambridge. He founded with Ben Davies. His ambition is to advance the way CSM is treated based on a better understanding of the course of CSM, and by identifying the best care for patients. His translational research investigates the cellular and molecular mechanisms underlying CSM in order to develop novel therapies. @KotterLab

Carol Sun-Schuster

Carol Sun-Schuster is an independent management consultant with over 15 years of experience in marketing, business strategy and communications, bringing a broad international perspective to her work.

Previously, Carol was the Asia-Pacific Fan Engagement Lead at Chelsea Football Club based in Singapore. She drove transformational change to their APAC business, building CFC to be a culturally relevant brand and becoming the top Premier League club in China. Prior to CFC, she held leading marketing positions at Disney in Singapore. She started her career in Los Angeles, working for companies such as NBCUniversal, Paramount Pictures and Warner Bros.

She supports the ongoing development of’s marketing and communications.

Carol received her bachelor’s degree in Deaf Studies from California State University, Northridge. She lives in Cambridge with her husband and daughter.



Helen trained as a solicitor at Freshfields in London and Singapore and spent 10 years there working as a corporate solicitor.  Her career after this saw her being involved in legal training and publishing and then working on a voluntary basis for a number of human rights and medical charities in the UK and Japan.

Helen has just completed a Masters in Medical Ethics and Law at King’s College, London and a chance meeting opened up the opportunity to become involved with  Helen is using her legal and charity background in a number of ways to help grow as an organisation and is particularly interested in helping develop a fundraising strategy.

Helen is also a trained mediator and has been accepted for an appointment to a Research Ethics Committee.

Helen lives in London with her husband James who is also a solicitor and their three teenage children.