Who We Are

The Origins of Myelopathy.org

Myelopathy.org was founded in 2017 as a collaborative information and support initiative bringing together the work of Dr Mark Kotter, academic neurosurgeon and specialist in complex spinal surgery, and Dr Benjamin Davies, trainee academic neurosurgeon and Research Fellow, with the prolific Myelopathy.org Support Group on Facebook founded by Iwan Sadler who has been living with Degenerative Cervical Myelopathy (DCM) since 2014. 

Mark and Ben initially set up Myelopathy.org to better engage with people who have DCM as they had both become interested in DCM through their research into regenerative medicine and development of NHS care pathways. Iwan Sadler was diagnosed with DCM in 2014 and feeling increasingly alone and frustrated by the lack of information and support he developed his own awareness campaign and one of the first Facebook community pages for DCM. It was inevitable the three should meet and their combined goals to raise awareness, increase support and improve diagnosis and treatment pathways led to the creation of Myelopathy.org. Registered as a charity in June 2018 our charitable objectives are to advance health and education in all aspects of DCM in particular by:
Immediate Diagnosis: Helping people and health professionals recognise the symptoms.
Timely Treatments: Driving research into new and innovative treatments that are timely and effective.
Patient Support: Building an international support community for people living with DCM.

The Team

Dr Benjamin DaviesCO-FOUNDER

About

Dr Benjamin DaviesCO-FOUNDER

Dr Benjamin Davies is an academic neurosurgeon and NIHR Clinical Research Fellow at the University of Cambridge, UK. He has a special interest in DCM, with a research focus of clinical assessment and implementation science.

Ben completed his medical training in Manchester, UK where he discovered his passion for neurosurgery and also clinical research. The position in Cambridge was a dream opportunity as it was there that Ben met Dr Mark Kotter, who was looking to establish a research theme in DCM. This opened Ben’s eyes not only to the many problems faced by those with DCM – problems which have become even more apparent over time – but also to the importance of working alongside those living with the condition to deliver advances.

Ben has great ambitions for Myelopathy.org: he wants it to bring together those living with the condition and those treating the condition, to improve our understanding and care, and ultimately improve the lives of those affected.

Ben also co-leads the AO Spine RECODE-DCM project, the NIHR RECEDE Myelopathy Regenerative Medicine trial, and the NIHR POLYFIX DCM trial. He also sits on the North American Spine Society Evidence Based Medicine Committee.

Lady Carter of ColesTRUSTEE

About

Lady Carter of ColesTRUSTEE

Appointed 2017.

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 Myelopathy.org 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 DCM 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 Michael G. FehlingsSCIENTIFIC ADVISOR

About

Dr Michael G. Fehlings MD PhDSCIENTIFIC ADVISOR

Professor Michael Fehlings is the Vice-Chair of Research for the Department of Surgery at the University of Toronto, Staff Neurosurgeon at Toronto Western Hospital, and Senior Scientist at the Krembil Brain Institute, University Health Network. He is a Professor of Neurosurgery at the University of Toronto, holds the Campeau / Tator Chair in Brain and Spinal Cord Research, is a Scientist at the McEwen Centre for Regenerative Medicine and a McLaughlin Scholar in Molecular Medicine. From 2008 to 2012, Professor Fehlings was inaugural Director of the University of Toronto Neuroscience Program, and he is currently Co-Director of the University of Toronto Spine Program.

Professor Fehlings combines an active clinical practice in complex spinal surgery with a translationally orientated research program focused on discovering innovative treatments to improve functional outcomes following spinal cord injury (SCI). In 2017, he led the international multi-disciplinary initiative to create Clinical Practice Guidelines for the management of DCM and acute traumatic SCI, published in the Global Spine Journal (Fehlings et al. Global Spine J. 2017;7([3 Suppl]: 6S–7S).

Michael Fehlings has received many prestigious awards, including the Gold Medal in Surgery from the Royal College of Physicians and Surgeons (1996) and the Olivecrona Award (2009) – the top award internationally for neurosurgeons and neuroscientists awarded by the Nobel Institute at the Karolinska Institute in Stockholm for his important contributions in central nervous system injury repair and regeneration. In 2012, Professor Fehlings was honoured with the Queen Elizabeth II Diamond Jubilee Medal and, in 2016, he received the Royal College of Physicians and Surgeons Mentor of the Year Award. In 2019, the Right Honourable Jacinda Ardern, Prime Minister of New Zealand, presented him with the Ryman Prize for his work enhancing the quality of life for older people.

Dr Johann GraggaberCO-FOUNDER

About

Dr Johann GraggaberTRUSTEE

Appointed 2017.

Dr Johann Graggaber is a consultant physician at Cambridge University Hospitals. After training as a reserve officer in the Austrian army he studied medicine in Graz, Vienna and Paris before pursuing postgraduate training in the UK. He specialised in internal medicine, endocrinology and clinical pharmacology at Cambridge where he also gained an MPhil. He regularly works in the emergency department and medical ambulatory care unit which he helped to develop.

Johann is the clinical lead of the Clinical Pharmacology Unit and associate lecturer of the University of Cambridge. He has an interest in medical education and is on the board of the not-for-profit organisation Cambridge Medical Seminars.

He enjoys endurance exercise, classical music and opera, ballroom dancing and travelling.

Wesley JanewayTRUSTEE

About

Weslie JanewayTRUSTEE

Appointed 2017.

Weslie 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.

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. At present, as well as being a Trustee for Myelopathy.org, Weslie is a Trustee of the Rockefeller University, where she serves on the Audit, Hospital and Technology Transfer Committees. In addition, she is an Independent Director of the New York Genome Center.

Zahabiya KarimiDIRECTOR

About

Zahabiya KarimiDIRECTOR

Appointed in 2021.

Zahabiya Karimi has worked in the charity sector in varying roles for almost ten years. After graduating top of her class as Valedictorian from Monash University, she has since worked with causes focusing on children, education, war and conflict, and environment in the UK and abroad, including at WWF, SOS Children’s Villages UK, Y Care International, and The Citizens Foundation. She brings her experience of working in programmes, fundraising, working directly with beneficiaries doing field work, and managing volunteers to Myelopathy.org.

Having grown up between London and Pakistan, and seeing the difference in healthcare access and poverty between those worlds, working in a healthcare charity is something close to Zahabiya’s heart. She feels privileged every day that she is able to work to provide more awareness and support for this condition to those affected, to help build a world where people can live their lives free from the life-limiting impact of DCM.

Dr Mark KotterCO-FOUNDER AND TRUSTEE

About

Dr Mark KotterCO-FOUNDER AND TRUSTEE

Appointed 2017.

Dr Mark Kotter is an academic neurosurgeon at the University of Cambridge specialising in spinal cord injury. His translational research investigates the cellular and molecular mechanisms underlying DCM. Mark seeks to develop novel regenerative medicine approaches to treating this condition.

He co-founded Myelopathy.org with Dr Benjamin Davies and Iwan Sadler; together they aim to advance the way DCM is treated based on a better understanding of the disease course, and by identifying the best care for patients.

Mark is also a stem cell biologist; his research focuses on stem cells, cellular reprogramming and regenerative medicine. A technology merging stem cells with synthetic biology has opened up novel opportunities for highly efficient and consistent production of cells for research, drug development and cell therapy. Mark is the founder of bit.bio and co-founder of Meatable, two companies based on this technology.

Oliver MowforthADVISER

About

Oliver MowforthADVISOR

Oliver Mowforth is a trainee academic neurosurgeon at Addenbrooke’s Hospital in Cambridge. Before starting his neurosurgical training, he studied medicine at the University of Cambridge.

Oliver first met Dr Benjamin Davies and Dr Mark Kotter when he was a medical student. In 2016 he started researching DCM and helping with Myelopathy.org, including writing blog articles, helping organise and run events such as public engagement days, charity research meetings and the charity launch event.

Oliver also set up the Myelopathy.org Student Society. The society runs talks, seminars, and lectures to teach medical students and junior doctors about DCM and related conditions. The society also set up national student essay and research competitions to raise the profile of DCM and secured sponsorship from several medical companies to fund these initiatives.

Oliver continues to contribute by mentoring current students undertaking DCM research projects. He also helps with the day-to-day work of the charity and has written many educational articles and pages for the website. He hopes to help develop the professional section of the site further and oversee the growth of the student and junior doctor society.

Dr Rury MurphyAMBASADOR

About

Dr Rory MurphyAMBASSADOR

Dr Rory Murphy is a board certified neurosurgeon whose practice focuses on complex cranial and spinal pathologies including tumors, spinal cord compression, and peripheral nerve surgery. He is a member of the American Association of Neurological Surgeons, AO Spine, the Congress of Neurosurgeons, and the AANS/CNS Section on Disorders of the Spine and Peripheral Nerves.

As a member of the AO Spine RECODE-DCM Community he is translating knowledge to improve patients with cervical myelopathy outcomes. Dr Murphy is active in translational cervical spinal cord injury research. He is the site Principal Investigator for the Department of Defense Cervical Spinal Cord Injury Trial and previously served as a PI for the Missouri Spinal Cord Injury Research Program. He is investigating new imaging techniques to predict recovery after spinal cord decompression for cervical myelopathy. His research has been published in Nature, Journal of Neurosurgery, Neurosurgery, and Spine.

Dr Murphy completed his neurosurgery residency at Barnes-Jewish Hospital, which is affiliated with Washington University in St Louis, and a clinical fellowship at the University of California-San Francisco.

Dr Murphy has co-founded and serves as a board member of a number of companies aiming to advance neurosurgical patient care.

Iwan SadlerCO-FOUNDER AND TRUSTEE

About

Iwan SadlerCO-FOUNDER AND TRUSTEE

Appointed as a trustee in 2021.

Iwan is from South Wales and has four children. Iwan’s background in print and design started at the age of 16 when he went to study at the Cardiff School of Printing and Design. This led to a career in the newspaper industry as a printer with the Northcliffe Group. At the age of 22, he started up a sign and design company.

After being diagnosed with DCM in 2014, and feeling frustrated at the lack of awareness and support for people with DCM, Iwan used his design and computer knowledge to initiate his online awareness campaign on social media. This resulted in one of the first Facebook community pages for DCM. On the back of the success of the community page, the Myelopathy Support Group quickly followed.

At around the same time, Iwan was contacted by Dr Benjamin Davies and Dr Mark Kotter and was asked if he would share his DCM journey for their new website Myelopathy.org. Iwan agreed and met up with them in 2016 at their Degenerative Cervical Myelopathy Day at the University of Cambridge. Given their common goals, Iwan joined Myelopathy.org in 2017 to set up and lead the Myelopathy.org Support Group on Facebook, a support community for people with DCM run by people with DCM.

Carol Sun-SchusterTRUSTEE

About

Carol Sun-SchusterTRUSTEE

Appointed 2020.

Carol Sun-Schuster is an independent management consultant with over 15 years of experience, bringing a broad international perspective to her work. She is a purpose-driven storyteller and transformational leader in branding, business strategy, communications, marketing, and sustainability.

Currently, Carol is a Senior Advisor to bit.bio, building the company’s corporate sustainability strategy.

Previously, she was the Asia-Pacific Fan Engagement Lead at Chelsea Football Club based in Singapore. Carol oversaw and implemented CFC’s APAC change strategy, enabling Chelsea to become 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.

Carol spearheads the ongoing development of Myelopathy.org’s branding, communications, and marketing.

David TownshendTRUSTEE

About

David TownshendTRUSTEE

Appointed 2020.

Having studied economics at the London School of Economics, David qualified as a chartered accountant and then joined Goldman Sachs, where for 25 years he held various market-related roles in the UK and Japan. David was appointed as a Managing Director in 2006 and was the Chief Investment Officer for Fundamental Equity in Goldman Sachs Assest Management in Japan from 2005 until 2010.

As the charity’s treasurer, David leads on all financial matters for the charity and helps out with any financial issues the charity may have.

He enjoys travelling, bridge, most sports, and spending time with his family.

Helen WoodCHAIR OF THE BOARD OF TRUSTEES

About

Helen WoodCHAIR OF THE BOARD OF TRUSTEES

Appointed 2019.

After gaining her undergraduate degree in law at the University of Birmingham, UK and her professional qualification at the College of Law in Chester, Helen trained as a solicitor at Freshfields in London and Singapore. She 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 voluntarily for human rights and medical charities in the UK and Japan.

After completing a Masters in Medical Ethics and Law at King’s College, London a chance meeting opened up the opportunity to become involved with Myelopathy.org. Helen is using her legal, ethics, and charity background to lead on the charity’s legal, governance, and fundraising strategy.

Helen is also a trained mediator and is Alternate Vice-Chair of London (Bromley) Research Ethics Committee.

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

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