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.
Vasculitis UK Trustees
CHAIR - DOROTHY IRELAND
I’m Dorothy Ireland, I’ve recently been elected as chair of Vasculitis UK and I’m still the Fundraising Coordinator. I successfully took us through the process of changing to a CIO ( Charity Incorporated Organisation ). There is still a lot of work to do with changing documents and information from the UK Vasculitis Trust to Vasculitis UK.
I was diagnosed with MPA in 2008 with renal failure. It has also affected my heart, and as if that wasn’t enough I have osteoarthritis and spinal problems.
I was born in London but I’m now in Derby. I’ve had various jobs including a court officer and a primary school teacher. I had a brief period with Department for Work & Pensions and was ill health retired from there 6 years ago.
I’ve also done a lot of voluntary work. I’ve been a school governor and was Chair of Governors for 10 years. I helped to establish and was secretary to a friends group for my local park and successfully applied for lottery funding, Awards for All and Breathing Places. I also helped to organise our local Fair and I ran the local dog show.
When I went to my first Vasculitis AGM it was still the Stuart Strange Trust and I met John and Susan Mills. I wanted to set up a local support group because like so many others I’d never met anyone else with Vasculitis. With their help, the East Midlands Vasculitis Support Group was born. I was then recruited as the Fundraising Coordinator for Vasculitis UK and a became a trustee.
You can contact me here: Dorothy Ireland
VICE-CHAIRMAN & DIRECTOR OF OPERATIONS - JOHN MILLSI was the Chairman of Vasculitis UK (or the Stuart Strange Vasculitis Trust as it was then known) from 2009 to 2019.
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.
KELLY JEFFRIES – SECRETARY
I’m Kelly, I’m 41 years old and live in Leeds with my husband, Ian, who is my full time carer, and our 16 year old son. Along with my form of vasculitis - Behçet’s Syndrome - I also have Antiphospholipid Syndrome, Systemic Lupus (SLE) and Crohn’s Disease, meaning I have 4 auto-immune disorders. I feel incredibly lucky to have a fantastic support system with my parents, daughter, son in law and grandson along with my G.P. and Rheumatologist all nearby, supporting me every step of the way.
Prior to falling ill, I always worked in administrative and secretarial roles but I also have some training in counselling. I am excited to be able to use these skills in my new role as Secretary for Vasculitis UK.
I have been involved with Vasculitis UK for 9 years now, having originally contacted John and Susan back in 2009 when vasculitis was first mentioned to me. Since then, I have made countless awareness graphics for sharing on social media (some of which have been made into a booklet - available in the online shop), I help to admin the online Facebook support group and, more recently, I have helped to manage the online shop and create posters for the amazing people who raise funds for Vasculitis UK. I am a massive supporter of people gaining the knowledge about their condition(s) to educate themselves and ensure they’re getting the best care and treatment possible, which is my vision for the future.
RICHARD REMORINO - HON TREASURER
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.
My name is Zoi and I was diagnosed with GPA vasculitis in November 2014. I was lucky to get an early diagnosis and react well to the treatment. However, Vasculitis has changed my life.
I have been a member of Vasculitis UK almost since diagnosis. I am one of the admins in the Facebook Support group. Some of you may have met me online. I have recently become an admin in the HealthUnlocked community. I am honoured to represent VUK in EURORDIS as an ePag in the RITA ERN. I am also active in our local vasculitis support group. Additionally I am a member of the Patient Participation Group of our local GP surgery.
I live in Plymouth, Devon, with my partner, Jim, my son Panteli and our cat. I am half Greek, half Swedish and I am fluent in both languages. I work at a secondary school, where I support children coming from abroad, helping them to adapt to the school system and aid them to follow the curriculum.
In my free time I like to do craft workshops with friends and their children, read books, bake cakes, and appreciate and photograph nature with my camera.
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!
In April 2013 I had just completed the London Marathon in 2:52:08, and came 3rd in the Leicestershire Road Running League Winter series. I was looking forward to the Summer league ahead, and more pb's. My body had other ideas, I spent most of the summer in and out of the doctors, and hospitals. It wasn't until I lost my hearing, and became very ill I was admitted to hospital where I was scanned, drugged, and tested for everything, until one doctor who had come across Vasculitis before, diagnosed me with Wegeners Granulomatosis, (GPA).
I've spent the last 5 years trying hard to get back to how I was. Its a tough journey with ups and downs, with the support of my wife Andrea and three children Oliver, Ruby and Joseph, I will keep fighting.
I have been able to work through my treatment and illness with the support of my work, and was promoted a few years back.
All through this I have had the best help and advice from vasculitis UK, and want to carry the good work that my fellow trustees, and volunteers of Vasculitis UK have done so before me.
I feel it is a great source of information for newly diagnosed patients, and doctors alike.
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 grandchildren and we also love visiting France.
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.
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.
PROFESSOR CHARLES PUSEY
Prof Charles Pusey is Professor of Medicine, and Head of the Renal Section in the Department of Medicine at Imperial College London. He is also Consultant Physician and Lead Clinician in the Renal Directorate at Imperial College Healthcare NHS Trust.
Prof Pusey is a clinician scientist with a particular interest in autoimmune renal disease, including primary systemic vasculitis. He runs a large multidisciplinary vasculitis clinic, and has made a major contribution to clinical trials in this area. He directs an internationally competitive laboratory research programme studying mechanisms of autoimmunity, inflammation and scarring in glomerulonephritis.
Vasculitis UK Volunteers
LAURA WHITTY - Awards Administrator
Laura has experience of administration and management in every sector, including the NHS, local government and education. As a result Laura has a raft of skills that are utilised by the team at the EATC4Children. Projects undertaken so far include the launch of a new website and logo, building the team's social media presence, organising fundraising events for Lupus UK, co-ordinating PPIE involvement in an upcoming animation, assisting the team in grant applications across all work streams and acting as study co-ordinator for the Juvenile Localised Scleroderma PRIOR study.
She has a passion for improving the lives of children, whether that be through education, safeguarding or medicine and is continually inspired by the work of the clinicians and scientists that make up the Experimental Arthritis Treatment Centre for Children (EATC4Children)
Laura tells us .... “In my spare time, I support my parents as a connected carer for their foster children, enjoy travelling during my holidays, see as much live music as I can and failing that (especially in the winter!) read as many books as I can get my hands on.”
KEVIN SOPER - VASCULITIS UK NEWSLETTER EDITOR
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 - VASCULITIS UK NEWSLETTER CO-EDITOR
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!
JULIE SCOTT - ASSISTANT FUNDRAISING CO-ORDINATOR
Hi 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.
I’m a 48 year old mother of 2 boys, happily married to Martin.
I was diagnosed with limited Granulomatosis with Polyangiitis (WG) in June 2014.Nothing about what then happened could ever be described as "limited".
I suffered with a total nose collapse & had it removed in November 2017.
I wear a fantastic magnetic prosthetic nose.
I am very keen to eliminate the phrase "Limited Wegners".
I finally achieved remission in November 2017 with Ritiuxmab after 2 1/2 years of methotrexate failed.