THE SARCOIDOSISUK TEAM

Meet the SarcoidosisUK team below. We would love to have a chat with you – please do get in touch.

Chairman

Henry SHELFORD, BSc (Hons) MSc MBA FRGS

Henry SHELFORD, BSc (Hons) MSc MBA FRGS

Chairman and CEO

Henry was diagnosed with Pulmonary Sarcoidosis in 2002 and, following a long period of treatment, is now in remission. He appreciates how lucky he is and to help more people have the same positive outcome he has been volunteering for Sarcoidosis UK ever since. In 2003 he raised £30,000, which he had doubled to £60,000, to fund Sarcoidosis research at Oxford University. He raised the money by holding the World’s Highest Formal Dinner – for which he was awarded a Guinness World Record. A record he still holds! Henry was elected as Chairman of the charity in 2014. He has refocused the charity on support, information, awareness and research. As with all SarcoidosisUK’s trustees Henry provides his time on a voluntary basis without any remuneration.

Henry says: “There is no treatment for Sarcoidosis – solely a small list of drugs to help control the symptoms and impact. For some the disease burns out. I was lucky it burnt out leaving me with little long term damage. For others it leaves massive damage. And for still others it doesn’t burn out. As a chronic condition it wreaks more and more irreparable damage and can ultimately be fatal. I volunteer with SarcoidosisUK so that we can stop that. We’re fortunate that we don’t have to do hugely expensive blue sky research – which would be almost impossible considering our income. Sarcoidosis is a rare under-researched disease. That lack of historic research allows us to utilise the backlog of learning, and other disease cures, to cure Sarcoidosis. In each case we simply have to ask “Does that apply to us?”. It’s a much cheaper, but still expensive, question to answer. It still requires Doctors, Research Professionals, Equipment, Clinics, and Labs.

Each piece of research we commission takes us one step closer to a cure. To help us get there please consider donating to us. Every single donation matters. Together we will find a cure.”

The Board of Trustees

John CORDNER, BSc FCCA

John CORDNER, BSc FCCA

Treasurer

John joined SarcoidoisUK as Treasurer in 2015. He is in charge of the charity accounts.

John developed symptoms in 2007 and was finally diagnosed with cutaneous sarcoidosis in 2012. This was later reclassified as systemic sarcoidosis. His condition is chronic but has largely been stabilised with medication. Like many sufferers he struggles with fatigue and aches and pains.

John studied mathematics at the University of Leeds and on leaving university trained as an accountant. He has been a member of the Association of Chartered Certified Accountants for over 20 years and holds a practising certificate. For over 25 years he worked in financial services in the City. He now runs his own accounting practice

Paul SINCLARE, ICSA MCIM MBA

Paul SINCLARE, ICSA MCIM MBA

Secretary

Paul joined SarcoidosisUK in 1997 and became Secretary in 2011. He has been a key part of the charity’s growth over the past 20 years.

Paul contracted Pulmonary Sarcoidosis in 1988. Initially he had a variable experience with treatments and hospitals but now has been stable for many years and is responding well to his drug regime.

Paul first trained as a chef and then returned to study, qualifying as a company secretary. He has spent much of his working life in the area of finance, more recently working primarily with charities. He is now semi-retired.

Susan WILSON, BCom FCCA

Susan WILSON, BCom FCCA

Trustee

Sue has recently stepped down from her full time role and is enjoying exploring personal interests. For over 20 years she headed up the finance function at a consultancy firm operating across the UK, dealing with cash management and all aspects of corporate governance. A member of her family is affected by sarcoidosis.
Emil GADIMALIYEV, MBBS MBA

Emil GADIMALIYEV, MBBS MBA

Trustee

Emil Gadimaliyev is a management consultant in the pharma/biotech industry, who has a passion for anything healthcare related. Previously a doctor in various NHS trusts, Emil has a family member with Sarcoidosis. He feels privileged to be part of a SarcoidosisUK’s search for a cure for sarcoidosis.

The Office

Jack RICHARDSON, BSc MSc

Jack RICHARDSON, BSc MSc

Senior Executive

Jack joined SarcoidosisUK in 2016, taking on the Executive Officer role in September 2016. He runs all the day-to-day operations of the charity, including the support services, information provision, website and communications. Jack sits on the European Lung Foundation Patient Advisory Committee. He lives in Hackney and enjoys cycling.
Marcin WASZAK, BA (Hons)

Marcin WASZAK, BA (Hons)

Executive

Marcin joined SarcoidosisUK in March 2018 and is responsible for our relationship with the sarcoidosis community. This includes managing all our fundraising and marketing activities and increasing the profile of SarcioidosisUK. He lives in Acton and enjoys dancing.

Our Nurses

Jo

Jo

Sarcoidosis Specialist Nurse

Jo qualified as a nurse in 2004. She has always worked in the community setting, initially as part of a District Nurse team but moving into quickly into General Practice. She currently works as a Specialist Practice Nurse with an interest in Respiratory Diseases, although she covers all the usual long term conditions and management thereof.  Jo has 18 years experience of living with Sarcoidosis and is proud to have helped set up the Helpline in 2016.
Jenny

Jenny

Sarcoidosis Specialist Nurse

Jenny lives in Glasgow and qualified as a nurse in 2006. She has always had an interest in long term conditions and has worked with people with MS, Parkinson’s and lymphoedema, as well as some other rarer conditions. She has also worked extensively with people with addictions to alcohol and drugs. Jenny has experience from a number of health related helplines. She joined the SarcoidosisUK team in 2017.

Volunteers

Jacqui Newton

Jacqui Newton

Patient Ambassador

I joined SarcoidosisUK in 2015. I organise our Scottish groups, help moderate the Facebook page and represent the charity as a patient ambassador. I’ve had sarcoid most of my life, affecting my brain, skin, eyes, lungs, joints and liver. Before my diagnosis I worked for a bank but had to retire early, through ill health. I’ve been blessed with a wonderful husband and good circle of family and friends.

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Contact

We would love to hear from you. Please get in touch with any questions, comments or suggestions.

Awareness

Everything SarcoidosisUK does improves awareness of sarcoidosis. See how you can get involved.

Research

SarcoidosisUK fund world-leading research into sarcoidosis. Our goal is to find a cure for the condition.