About Vasculitis UK
Vasculitis UK Trustees, Medical Advisors and Volunteers
Here the Trustees introduce themselves, with a little about themselves, what they presently do for V-UK, and their hopes for the future. As you will see, Vasculitis UK is proud to say that the Trust is run by vasculitis patients for vasculitis patients.
CHAIRMAN - JOHN MILLSI've been the Chairman of Vasculitis UK (or the Stuart Strange Vasculitis Trust as it was then known) since 2009.
I was a dentist in a country practice for over 40 years until I retired in 2007. My time in medical school (50 years ago) and 40 years of working in the NHS provides a good background for understanding vasculitis diseases and how the healthcare system in the UK operates.
I work very closely with my wife, Susan, who has now re-joined the fold as a Trustee.
We are both on second marriages and have 4 children and two grand children between us. I was "struck down" with Wegener’s Granulomatosis (GPA) in 2001, but was promptly diagnosed and suitably treated, so now lead a pretty normal and very active life, despite my having recently passed three score years and ten. We have a second home in France, where we spend about 2 months a year - but, thanks to the internet, we still continue to work for Vasculitis Uk from there.
Surprising though it may seem, I find vasculitis to be very interesting and I get very excited and passionate about the research that is taking place, the progress that is being made in the treatment of the disease, the understanding of how the disease process works and of its origins and causes, and the improvements soon to be achieved in the delivery of treatment for people with vasculitis. Vasculitis UK plays an increasingly active and influential role in all of these.
Over the past few years V-UK has taken over our lives, but the up side of that has been meeting and talking to so many nice, different, interesting and good humoured people who are determined to not let having a silly disease like vasculitis get them down.
You can contact me by e-mail here: John Mills or phone: 0300 365 0075. If you would prefer snail-mail then it's: West Bank House, Winster, Matlock, Derbyshire, DE4 2DQ. This is also the registered office of Vasculitis UK.
VICE-CHAIRMAN - MIKE PATNICKI have recently retired from Arthritis UK where I was responsible for the funding of medical research grants and the relationship with medical and scientific researchers for the last 13 years and was co-opted to the Trustees last year to advise on the governance of the charity. My background prior to this was as a Lecturer in accounting and business following a career in manufacturing industry.
I was elected as a Trustee of Vasculitis UK in 2014. I wish to bring my expertise in medical research funding and knowledge of the medical research charity sector to the benefit of Vasculitis UK and its members, and as part of it to enhance the profile of Vasculitis in the wider vasculitis community. I also was a Trustee of ARMA during the time when they developed the Standards of Care so am committed to best practice being widely adopted.
TRUSTEE - DOROTHY IRELAND (FUNDRAISING CO-ORDINATOR)I'm Dorothy Ireland and I'm one of the newer contingent of Trustees elected in 2013.
I'm 60 years old from Derby (originally from London). I was diagnosed in 2008 with microscopic polyangiitis (MPA), following a routine blood test which just caught renal failure. I'm still on azathioprine.
My previous jobs have included being a court officer, primary teacher, carer for my husband, who had a rare muscle wasting disease, and working for the DWP. (Last year I was given ill health retirement from the DWP).
I have also done a lot of voluntary work as secretary of a friends group, successfully applying for grants from the lottery and other funders. I hope that my expertise in the voluntary world will be helpful for the Trust. I have recently helped to start the East Midlands Vaculitis support group with Susan and Lisa.
You can contact me here: Dorothy Ireland
TRUSTEE - SUSAN MILLSMy name is Susan and I am married to Chairman John Mills. I was a Vasculitis UK Trustee in the past and I was re-elected in 2014.
My first introduction to Vasculitis UK, then known as The Stuart Strange Vasculitis Trust was back in 2001 when John was first diagnosed with Granulomatosis with Polyangitis (WG). I found the advice and support I received back then as invaluable.
In 2009, when John was nominated chairman of Vasculitis UK (SSVT), I found myself thrown into a world of many different types of vasculitis and little did I know then, how much our life would change.
In addition to helping John I am also involved in the East Midlands Support Group with Dorothy and Lisa, and I am also actively involved with the Vasculitis UK Facebook and Twitter discussion groups and with Health Unlocked.
I am from a background of dentistry, starting as a dental nurse at the age of 17. I later qualified as an NVQ Assessor/Tutor for dental nurses and also qualified in Dental Practice Management.
After my two children were born I went on to qualify as a Social Worker with the Open University and have worked many years with the elderly, disabled and vulnerable young people.
John and I are used to working together, so being thrown together, working for Vasculitis UK, almost full time was not a difficult choice for us both to make. When we do manage to have some spare time, we help look after the “grandgirls” and we also love visiting France.
TRUSTEE - JENNIFER FULFORD-BROWN
I was born in 1947, and was diagnosed with Churg Strauss Syndrome ( EGPA ) 12 years ago and consider myself fortunate to continue as a patient at Addenbrooks, Cambridge paid for by the Welsh NHS.
My working life has been split between business and charity work. My current businesses include property development, public relations and marketing. On the charitable side, I worked for Relate, latterly providing couples with specialist therapy, my thesis explored the effect pain has on relationships.
In recent years, since moving to Wales, I have been involved in various meetings about improving the Welsh National Health Service. I also took over the Vasculitis support group in Cardiff, having set up the support group in Cambridge.
I enjoy gardening, and belong to an organic gardening club. I am a volunteer at Cardiff Castle. My partner and I have a caravan and travel abroad. We have 3 sons and 4 grand-daughters.
TRUSTEE - DAVID NEWMAN
I lived my formative years in Scotland before moving to London in 1969 where I worked with London Transport for 40 years. I enjoy working with people and helping them.
In 2012 I was diagnosed with Rheumatoid Vasculitis so in March 2013 I founded the London Vasculitis Support Group based in Swiss Cottage, Hampstead for people with vasculitis, their families and carers. The group’s venue has excellent transport links from most of London. Today we have members coming from all parts of London and the surrounding Home Counties.
I have had experience in fundraising for other charities and hope to be able to do the same for VUK in the future.
I am also a Trustee for Camden Carers Centre being involved with the HR committee there. This is a charitable organisation related to the Carers Trust and is highly respected for the work that they do in promoting the cause of unpaid carers in the London Borough of Camden through the provision of support, information and advice.
My other interests include gardening, ecology and conservation and occasionally I go sailing on an old Scillonian pilot cutter belonging to my friend.
TRUSTEE - GARETH GARNER
My name is Gareth; I am currently studying Biomedical science at the University of Chester but I’m originally from Cambridge. I was diagnosed with Anti-GBM disease when I was 16 after a lengthy stay at Addenbrookes Hospital, around the same time as my mother was diagnosed with Bechets disease.
I’ve already worked in a few areas of health care such as a dispenser in a pharmacy, and I’m currently on bank at a local hospital. Further to this, I help run the Young Vasculitis UK Facebook page allowing the younger ‘vasculitis population’ to ask questions and get advice from similar people. I also volunteered for the patient symposium in London (2015), which I’m hoping to do again in the near future.
In my spare time I enjoy listening to music, attempting to kick a ball around and reading. However, the reading usually involved some kind of Anti-GBM based research paper!
Vasculitis UK Medical Advisors
PROFESSOR DAVID JAYNEProfessor Jayne is Reader in Vasculitis at the University of Cambridge, and Honorary Consultant Physician and Director of the Vasculitis and Lupus clinic at Addenbrooke's Hospital. He is a Fellow of the Royal Colleges of Physicians of London and Edinburgh and Fellow of the Academy of Medical Science.
David has undertaken numerous studies into vasculitis and is the current President of the European Vasculitis Society (EUVAS). His research group in Cambridge conducts international clinical trials in vasculitis and earlier phase clinical trials and biomarker studies in vasculitis and lupus.
PROFESSOR DAVID G.I. SCOTTProfessor Scott will be the Chair of the new Vasculitis UK Research Review Panel.
Professor Scott trained at Bristol Medical School and has previously worked in the Rheumatology units at the Royal National Hospital for Rheumatic Diseases in Bath, Southmead Hospital in Bristol and the Queen Elizabeth Hospital in Birmingham (with Professor Paul Bacon) as a trainee before becoming consultant Rheumatologist at the Norfolk and Norwich University Hospital (NNUH) in 1988.Professor Scott was appointed honorary Professor of Rheumtology to Norwich Medical School in 1998. He is now honorary consultant at NNUH having recently retired from full time NHS work. David still continues to see patients with vasculitis and has a longstanding and ongoing interest in clinical aspects, epidemiology and treatment of the systemic vasculitides.
PROFESSOR RICHARD WATTSI am Richard Watts. I was born in North London and qualified in medicine at Oxford University. I trained in rheumatology at the Middlesex Hospital, Addenbrooke's Hospital, Cambridge and the Norfolk and Norwich Hospital, Norwich.
I am a consultant rheumatologist in Ipswich and senior lecturer at Norwich Medical School and Visiting Professor of Rheumatology at University Campus Suffolk.
My research interests are the epidemiology and the causes of vasculitis, together with the informational needs of patients and their carers.
For relaxation I enjoy alpine hiking, growing my own vegetables, and steam engines.
Vasculitis UK Volunteers
HON TREASURER - RICHARD REMORINO
I am Richard and 42 years old. I live in Worthing, West Sussex and proud to be Treasurer of Vasculitis UK. I first contacted Vasculitis Uk in 2012 having been diagnosed with GPA, quite frightened and unsure what this meant for me and my family and what we had in front of us. The invaluable help and support I received then and to this day is the reason I wanted to be part of the team.
Having spent 20 years in the accounting profession it wasn’t until my diagnosis and treatment that I decided to start my own accounting company. Vasculitis did change my life in many ways but this has been one of the best decision’s I have made, it is now an honour to help and support in any way I can.
I personally enjoy all sports, including skiing, running and being an Everton Football Club season ticket holder. However all of these are second to my children and family.
JULIE SCOTT - Assistant Fundraising Co-ordinator from 2014Hi everyone, I'm Julie Scott (Jules) for short, 47 and married to a saint (Derek). I live near Selby in North Yorkshire and work full time for the local College. I was diagnosed with GPA in April 2012 after coming back from a fantastic holiday to Florida and being confirmed as Greatest Loser with my local Slimming World Group by losing 7 stone.
At the beginning (which I cannot remember) I spent quite a bit of time in ICU and in total, ended up being in hospital for 22 very long weeks. I had to learn how to walk again and get my life back on track. The support of Saint Derek and my family and friends got me through the hard times. But the support from Vasculitis UK gave me the understanding to beat this disease.
I wanted to give back to Vasculitis UK so became a volunteer in 2014 to support others with their fund raising events.
EMMA CALDWELL - Assistant Fundraising Co-ordinator
Hi, my name is Emma and I first came across Vasculitis UK when my daughter Kira was diagnosed with HSP at the age of 3. At this stage we hadn't heard of Vasculitis and wanted to find out as much information as possible and John and Susan were fantastic and offered so much help and support to us at a very scary time.
Since then I have wanted to help raise awareness of Vasculitis as much as possible to help others diagnosed have a better understanding of what Vasculitis is. This has been done in several ways such as Kira and other family members running the Manchester run a number of times and also organising the first Vasculitus Charity Ball in 2017 in Manchester, which was a huge success and raised lots of money and awareness for Vasculitis UK.
As well as raising 4 children, having 3 cats and 2 dogs I also run my own company, innov8 Conference Services, which organises large events and AGM's around the world as well as also running a number of our own in house events.
KEVIN SOPER - Co-Editor Vasculitis UK Newsletter from June 2015
Hi, I'm 48 years old, I live in Ashford, Kent , and I work as a Technical Operator within the food industry, although my background has been within the print Industry with over 20 years experience.
My dealings with VUK came about after the sad passing of my sister Claire who at the age of 38 was diagnosed with a very progressive form of Wegener's Granulomatosus in 2010, as a family we had no understanding of this disease and through VUK we decided to find out all about it and to help raise awareness by fundraising so other families wouldn't have to go through what we did.
GRAHAM BAKER - Co-Editor Vasculitis UK Newsletter from June 2015
I took early retirement some 11 years ago, having worked for almost 30 years in Banking.
I am married to Carol, and we have four beautiful granddaughters who we are fortunate play a large part in our lives. I am a keen photographer, maintain an interest in graphic design, and am an active supporter of my village cricket club, where my duties as umpire have been dispensed with as my sight and hearing are now not up to scratch!
KELLY JEFFRIES – Online Shop and Awareness Graphics
Hi, I am Kelly, I'm 39 years old & I live in Leeds, West Yorkshire with my husband, Ian, who is also my full-time carer, and our 14 year old son. I have three auto-immune disorders; Behcet's Syndrome , Systemic Lupus (SLE) & Antiphospholipid Syndrome (APS).
I'm very lucky to have a fantastic support network as my parents, daughter, son-in-law & 7 month old grandson live near to me. My GP, who has been a massive support, is very nearby too.
I have been poorly since I was a small girl, but, despite numerous tests, scans & specialists over the years, my parents were always told they couldn't find anything wrong with me so, naturally, they believed the medical professionals & thought I was a "drama queen"!
Prior to falling ill, I worked in administration & secretarial roles so I am very happy to be volunteering to help run the VUK online shop and to continue my role in raising Vasculitis awareness.