We currently have a Board of 12 Trustees. They include people affected by the condition, relatives and healthcare professionals. Trustees bring a range of skills, knowledge and experience that all help with the smooth and efficient running of the organisation and ensuring that it meets the needs of its diverse memberhsip.
Chair: Mark Dearlove
I have been involved with the SMA community for almost 20 years following the diagnosis of a close friend's son with SMA Type 3. To begin with I raised money on behalf of The Jennifer Trust and then The SMA Trust by participating in a number of events including running the Reykjavik and Sydney marathons. Subsequently I became a trustee of The SMA Trust and then served as its chairman until 2015.
I spent 35 years in the Financial Services sector recently retiring from Barclays at the end of 2019. During my last 5 years with Barclays I was based in Asia as the regional Head of Markets and the Country Manager of Barclays Japan.
Treasurer: Katharine Jackson
Katharine is chief operating officer and chief finance officer for SAGE International which is a leading global publisher of journals, books and electronic media for academic, educational and professional markets. Since 1965, SAGE has helped inform and educate a global community of scholars, practitioners, researchers and students spanning a wide range of subject areas including business, humanities, social sciences and science, technology and medicine. Katharine has worked within the media sector for the last 14 years. She is a chartered accountant and an MBA and spent the early part of her career working for PwC focussing on acquisitions.
In January 2012, I was flung headlong into the previously unknown world of SMA when one of my twin grandsons was diagnosed with SMA just before his first birthday. I decided my life would have to take a different direction.
I left behind 30 successful years as a secondary teacher (as well as spells as a stay-at-home mum, childminder and playgroup leader). This had been the right career for me - until SMA entered my life.
Now, I help to look after my twin grandsons and granddaughter while my daughter works or deals with the many challenges that SMA brings. I know the reality of life for a 7 year old with SMA and the impact it has on his twin brother, younger sister and parents. Hydro-therapy and riding have become part of my weekly routine. I see from the inside the varied effects of SMA on four generations of a family, the diverse public perception of disability and the time-consuming, interminable battles that have constantly to be fought to achieve the smallest things.
I wouldn’t change my present life for the world. The SMA community might be small but it is strong and supportive. In particular, SMA UK plays a major role in the lives of those with SMA, from providing practical outreach help, vital information and social events to funding research - and thus providing hope. Because SMA is an ‘orphan disease’, this role is at present largely unseen by the wider public. I believe that as awareness of SMA increases, SMA UK is becoming more prominent. I know SMA UK Trustees and the SMA UK team work very hard to achieve this.
Dr David Hopkins
I am a semi-retired GP living in Worthing, West Sussex. I have worked as a GP partner for over 30 years and have a wealth of clinical experience, as well as experience of running my own business and employing staff. I also have experience of participating in health service management as a Membership Governor of Coastal West Sussex Clinical Commissioning Group from 2013 to 2016.
I now have a very personal interest in SMA as my grandson Oscar was born on June 11th 2017 in Leicester and soon afterwards was diagnosed with SMA Type 1. His parents were very brave and did their best to manage. I became involved with the lobbying to make Spinraza available and attended the All Party Parliamentary Group for muscular dystrophy meeting on 19th July 2017 where I presented testimony to the group on behalf of Oscar and his parents. He was accepted and started treatment but very sadly passed away in December 2017.
I would very much like to use my experience to help the charity support families and improve access to treatment.
Casimir was the founder of The SMA Trust and was an integral part of the founding of SMA Europe. Casimir was President of SMA Europe from 2010 until 2016. Casimir is also the father of Ben who has SMA Type 3. Casimir works in the sports media industry and is Director of several companies.
Toby is founder of Mildon Ltd - an inclusive growth agency - and is a Diversity and Inclusion expert. He has over a decade of management experience working for British Airways, Accenture, Cerner, the BBC and Deloitte. Toby works with HR Directors and senior business leaders to hardwire Diversity and inclusion into their business culture and architecture. Most recently Toby has been training at Sony and advising Harper Collins publishing on how to become a disability confident employer. Toby's business addresses the UN's sustainability goal number 8 to enable economic growth and decent work for all. Toby was born with SMA Type 2. He lives with his boyfriend in London. Toby is a fellow of the Royal Society of arts.
Dr Ros Quinlivan
Dr Quinlivan graduated from University College London with degrees in Psychology and Medicine and has been working in the field of neuromuscular diseases since 1990. She trained in Paediatrics and developed an interest in neuromuscular disorders (NMD) during her research post at Guy’s Hospital where she studied Duchenne and Becker muscular dystrophies for her MD thesis. She was director of the Centre for Inherited Neuromuscular Disease at RJAH Hospital in Oswestry until 2010 when she moved to London to take up a post leading for transition of young people with NMD from Great Ormond Street Hospital to The National Hospital for Neurology and Neurosurgery. She spends most of her time now caring for young adults with inherited NMD in the adult service. She is involved in clinical trials for NMD and is also a joint co-ordinating editor for the Cochrane Neuromuscular disease Group.
Dr Hassan Sobati
My family and I entered the world of SMA in November 2013 when our only daughter was diagnosed with SMA Type 2 - borderline Type 3 at the age of just over 2; and there was suddenly so much to learn. I felt fortunate that back in 2000, before I changed career, I had completed a PhD in Molecular Biology at King’s College London. The principles of this field are at the heart of SMA research. Having read extensively on the subject I now feel that I have got an in-depth knowledge of SMA research. I travelled to Cure SMA conference in USA in 2014 where I met some leading scientists and learned a lot from other families and the extensive workshops over several days. I think attending conferences is important for learning purposes and intend to participate in future conferences on SMA.
My vision of SMA research is that the future is indeed bright for the newly diagnosed; and the post symptomatic patients should hopefully benefit too. With regards to the latter group, many commentators seem to agree that the sooner the timing of the intervention the better. I think there is an obvious need for much more research in basic science in order to give the post symptomatic patients a better chance of recovery.
In the absence of a cure, the best we can do is to improve our care plan. In the case of our daughter, our care plan follows simple principles which have so far paid off. I think happiness - through a happy family and active social life - is at the heart of a good plan. The rest which follow are meeting the dietary needs, various types of therapy such as physiotherapy, OT, hydrotherapy, hippotherapy (Therapeutic riding) etc. The aim is obviously to maintain the best quality of life under the circumstances but also to improve one’s abilities to his/her full potentials so that they can benefit the most once the medical intervention finally comes about.
I attended the conference in Stratford-Upon-Avon and felt privileged when I was asked to become a trustee of the SMA Support UK in late 2014. As well as that, I have been in the past, and am currently involved in running various committees and boards of directors. I hope my experience in this respect as well as my knowledge of SMA research can contribute positively to our board of Trustees.
Tim was also part of the Corporate Development, Awareness & Fundraising group of Trustees at The SMA Trust and sat on their Finance sub-committee. Tim has been a professional services advisor and business leader for the past 20 years and currently serves as Chairman of Sheffield Haworth. He founded the business in 1993. Tim has advised chief executives, boards, executive committees and human resources directors on their senior human capital needs, working with a diverse range of organisations across all regions of the world. Tim is the father of Freddie who has SMA Type 2.
Professor Kevin Talbot
Professor Kevin Talbot is Professor of Motor Neuron Biology in the Nuffield Department of Clinical Neurosciences at the University of Oxford and Honorary Consultant Neurologist at the John Radcliffe Hospital. He is Director or the Oxford Motor Neuron Disease Case and Research Centre. His research focuses on the cause and treatment of diseases of the motor neurone, including SMA.
Hugo van Vredenburch
Hugo is a financial service professional and presently Chairman of Interactive Investor (ii) the UK’s second largest direct investment platform with 300,000 clients and more than £20 billion of client assets.
Prior to ii Hugo was CEO of the TMF Group and one of its predecessor companies from 2005 – 2014. TMF is a multinational professional services firm that provides accounting, tax, HR and payroll services to businesses operating on an international scale. It operates in 80 countries with 7,500 employees and has grown rapidly both organically and through acquisition. Prior to TMF, Hugo held a variety of positions at Goldman Sachs over a 13-year period, including heading up Equities Division in Japan, as COO of the Global Equities Division and co-leading the Pan-European Equities Franchise. He retired as Partner and Managing Director in 2005.
Hugo is also a Non-Executive Director of Ecospray and Saltus Wealth Management and is on the governing council of Fauna and Flora international, the world’s oldest conservation charity.
I work full time as a Chartered Financial planner and have been in my current role for nearly 10 years. I am privileged to be the mother to 3 sons, the youngest of whom was diagnosed with SMA Type 3 some 17 years ago. The SMA UK charity came into our lives initially as the Jennifer Trust and provided support and hope whenever it was needed. There have been many times over the last 17 years when there were challenges to be faced and battles to be fought and changes to me be made. It is important to know that there are networks available to help families through the SMA rollercoaster, and that SMA UK continues to offer that support.