Lynda Hayward - Trustee
David Adams is Professor of Hepatology and Head of the School of Immunity and Infection at the University of Birmingham and Director of the NIHR Biomedical Research Unit for Liver disease at the Queen Elizabeth Hospital. His clinical interests are transplant hepatology and autoimmune liver disease including PSC. Laboratory research interests are focused on mechanisms of immune-mediated liver disease.
After initial training in hepatology in Birmingham he continued his immunology training with Dr Stephen Shaw at the Experimental Immunology Branch of the National Cancer Institute, Bethesda, USA before being appointed to the Chair of hepatology in Birmingham in 1997. He has a long-standing interest in understanding how the immune system causes liver disease and how inflammation in the gut can lead to liver disease in the form of PSC. His group have defined molecular mechanisms used by disease causing white blood cells to enter the liver from the blood.
As a consequence of the funding from NIHR to support the Biomedical Research Unit in Liver Disease in Birmingham, they are developing new treatments for liver disease by targeting pathways involved in the recruitment of damaging effector cells or by promoting the recruitment of therapeutic cells that promote repair and resolution of inflammation.
Roger Chapman was born in South Wales and attended a Grammar school in Cardiff. He lives in Oxford and is married to a Doctor with 4 grown up children, one of whom is an intensive care doctor in Perth, Australia.
He qualified from St Bartholomew’s Hospital, University of London in 1974, and trained in liver disease, firstly as a registrar in the Liver Unit in Southampton, and then as a lecturer on the Liver Unit at the Royal Free Hospital in London, from 1976 to 1981 under the supervision of Prof Sheila Sherlock, obtaining an MD on “Iron Metabolism in Liver Disease” in 1981.
He moved to Oxford as senior registrar in 1981, becoming a consultant at the John Radcliffe Hospital in 1986. He spent an “off service year” year as a visiting scientist at the University of Washington in Seattle in 1983-4.
Whilst at the Royal Free he developed an research interest in liver disease associated with Inflammatory Bowel Disease which he has continued to this day. He has published 4 books, over 60 book chapters and 200 original articles mainly in the field of autoimmune liver disease, viz Primary Sclerosing Cholangitis (PSC), Primary Biliary Cirrhosis (PBC) and latterly IgG4 related disease.
He is a founding member (in 1992) of the International Autoimmune Hepatitis Group (IAHG) producing position papers in the field of Autoimmune Hepatitis. More recently he has been involved in the foundation of the International PSC Study Group (2009) facilitating collaboration between different international centres researching into PSC and the foundation of British Autoimmune Liver Disease study Group (2010). He is one of the authors of the current European (EASL ) guidelines for “Cholestatic liver diseases” and the first author of the recent North American (AASLD) guidelines on the “Management of Primary Sclerosing Cholangitis”.
Roger is medical advisor/consultant to Perspectum Diagnostics Ltd (not an employee).
In 2014, Roger was awarded a Fellowship of the American Association for the Study of Liver Diseases(AASLD).
Away from medicine, he enjoys watching and playing sport particularly tennis and golf, and is a regular opera goer.
James is working as one of the online community hosts, assisting with the web site administration.
'We deployed PSC Connect to allow PSCers to find support from others in their local area. We are always looking at ways in which we can use technology to assist the charity in its aims and objectives'
He was diagnosed with UC in 2003 and PSC in 2007 and largely asymptomatic ever since (although Gall Bladder removed in 2011 as a result of PSC).
He has worked for a large international insurance company as an IT Project Manager.
In his spare time he likes to keep fit with Spin Classes and Running his favourites and completed his 5th Brighton Marathon in April. He is planning a charity bike ride for PSC Support in 2016.
'I am really interested and excited about ensuring the UK PSC initiative goes ahead. We are currently reviewing the AMRC proposals to ensure we have excellent governance and process as a charity, to ensure that we are in a good state when PSC UK takes off.'
He would like to encourage more people to sign up for organ donation and to raise the visibility of this condition, especially within the medical community.
Gary is Group Digital Director for one of the largest independent media and digital agencies in the UK, working with global brands and household names such as Nestle, Purina and Heineken. With an excellent knowledge of digital strategy and strong commercial awareness he was appointed to the Board of Trustees to bring guidance, advice and strategic direction to PSC Support across the ever-changing digital landscape. Diagnosed with PSC and an Auto-immune Hepatitis overlap in 2008, Gary underwent a liver transplant in January 2017 after just 9 weeks on the waiting list.
“Having experienced the condition from diagnosis through transplant, I wanted to share my experience of PSC with other patients to provide a level of transparency and reality; particularly in the younger age group and those with children. The work that Martine and the wider PSC Support team continuously undertake has been invaluable in helping to improve the lives of people with primary sclerosing cholangitis (PSC) through support, education, advocacy and research.”
Gary is an avid Porsche fan and also collects retro video games. He is the co-founder of Ruck.co.uk, the UK’s leading Rugby Union website, which reaches millions of rugby fans across the world each month. He lives with his wife and two children in the West Midlands.
Martine was diagnosed with Primary Sclerosing Cholangitis (PSC) in 2007. She became a Trustee and Chair of PSC Support fin 2011. One of her priorities is to ensure all PSC patients have access to accurate information about their disease, and access to support, especially contact with other people with PSC. She was a founding member and Chair of the Liver Patients’ Transplant Consortium from 2013-2015 which brought together UK liver patient organisations and charities to improve liver transplant services and shape policies. She believes strongly that patients have an important role to play in our search for a cure in terms of shaping, driving and contributing to research.
'I want PSC Support to continually improve the provision of quality PSC information, to work with stakeholders to ensure that clinical trial designs for effective PSC treatments lead to drugs that become available to patients quickly, and to ensure that the emotional wellbeing of people with PSC and their families is recognised alongside the physical symptoms. Above all, I want to see PSC stopped in its tracks, especially for our younger patients.'
I was diagnosed with ulcerative colitis in 1974, PSC in 1995 and had a liver transplant in 2003.
I first became involved with PSC Support in 2007 when my wife Margaret and I attended the Oxford Meeting. I volunteered to be the treasurer and a support line contact in 2011 when the charity was appealing for new helpers. Hopefully I contribute towards the charity doing what its name states to provide support to those suffering from PSC and their families.
My experience of having a liver transplant also enables me to say that rather than being something to be dreaded a transplant should be regarded as a chance to have a new and much improved life. I’m now retired but prior to that my varied employment consisted of being a building society trainee manager, a clerk at Northern Electric, the treasurer of my church and a delivery driver.
Margaret and I are active in our church and enjoy helping to look after our granddaughters Emily and Megan who I wouldn’t have lived to see without my transplant. We also own a motorhome and enjoy touring in the UK and mainland Europe. I try and make the most of the extra life that I’ve been given.
I first heard of PSC in 1995 when my husband Keith was diagnosed with it after a major bile duct reconstruction operation. He subsequently had a liver transplant in 2003.
We got involved with PSC Support after attending the Oxford meeting in 2007. Both Keith and I found it very helpful and informative to be able to chat to other PSCers and their families. As the wife of someone who has had both PSC and a transplant I understand the problems and emotions that partners face and I try and offer help and support when I can both at meetings and on Facebook.
I offered to help with distributing PSC Support’s merchandise in 2012. I’m retired now but in my working life I was a dispenser at Boots for 24 years and at an independent chemist prior to that. I also worked at a mail order firm for a few years.
We are both active members of our church and enjoy helping to look after our granddaughters Emily and Megan. We also enjoy touring the UK and mainland Europe in our motorhome. We try and make the most of the new life that Keith has been given.
I was diagnosed with PSC and UC in 2006 and joined PSC Support in 2012. I immediately knew I wanted to get more involved with the charity and community as they have helped me a lot already and I wanted to give something back.
I am currently a student at Edinburgh Napier University in my final year of the BA (Hons) Law. I started Uni just before I was diagnosed with PSC and UC and therefore it has taken me 6 years to complete the 3 year course due to some episodes of ill health, but I persevered and will (fingers crossed) graduate in October this year.
I work part time in John Lewis Edinburgh as a Financial Administration Assistant and I spend most of my spare time out with the horses or walking my crazy Working Cocker Spaniel.
"I would like PSC Support to continue to reach out to people and to continue to try and raise awareness of PSC. PSC Support is a place for people to learn about the disease and a way for those affected by the disease to feel supported and reassured that they are never alone in their fight."
Just before spending half a year as yellow as a Simpson's character due to his stupid liver, Mark became our Younger Person's Coordinator. He can usually be found on the Facebook group or forum offering his opinions and advice. Feel free to contact him by Facebook, forum post, twitter, Skype or any other medium you like.
Maxine was diagnosed with PSC and UC in 2006 at the age of 17. Despite her diagnosis she was able to complete a BTEC and a BA (Hons) degree in Dance.
In 2013 her health deteriorated rapidly due to complications caused by PSC and she was placed on the liver transplant waiting list. After 15 months of waiting, she received a new liver in October 2014 and is now recovering well, already feeling miles better than she has in years.
She first became aware of PSC Support not long after being diagnosed and was immediately comforted by the help and information they gave to her and her family. Over the past 8 years Maxine, her family and friends have organised several fundraising activities for PSC Support including a skydive, a 52 mile bike ride and the London Marathon to name a few! She is an active member of the Facebook group, offering support and guidance to other members whenever she can.
Maxine is extremely passionate about raising awareness for organ donation and the increasing need for more donors. Through this, she also aims to raise awareness of PSC so it is more recognised and understood by the public and medical professionals. She started writing a blog whilst she was waiting for her transplant with the aim to provide support and comfort to other people who may be facing the same situation as well as encouraging people to think about organ donation.
Maxine dedicates a lot of her time to media campaigns to help the cause!
'I want PSC Support to be the first place that people go to when they are first diagnosed. There is so much inaccurate information about PSC out there and it can be very detrimental to people affected by PSC. I want our charity to make people realise that they are not alone, that PSC shouldn't stop you but most of all I want our charity to give people hope.'
I have worked for 34 years in the NHS as a Biomedical Scientist in Haematology and Blood Transfusion. In Nov 2011, within a couple of months of starting his Biomedical Engineering course at Glasgow university, my 18yr old son, Jonathan, became ill, had bloods taken by his GP and I received a phone call to say that he had been referred for a liver scan and to see a liver specialist; a phone call I will never forget. By Jan 2012 he had the diagnosis of UC with which I was familiar, and PSC, of which I was not. The consultant wrote the name on the condition on a piece of paper, arranged his colonoscopy for a few days’ time and home we came. I immediately looked up PSC on the internet and was absolutely devastated. How could my fun-loving son, just starting out on adulthood have such a devastating illness? The next few weeks involved getting the UC under control but still lurking at the back of my mind was this awful condition PSC. I decided the time had come to be brave and do some more internet searching.
When I came across the PSC Support website it was such a relief to know that other parents were having the same feelings as I did and that I was not overreacting to this diagnosis. I also found the discussions taking place, particularly on the Facebook group, very encouraging and realised that it is possible to live with PSC and have a reasonable quality of life. Although I have not as yet attended any of the scientific meetings, I find the minutes of each very encouraging. I realised that as a family we will face hurdles along the way but we would tackle them one at a time. Susan Heggie made contact with me as we live within travelling distance of each other and her support, like that of the website has been invaluable. There are now 3 mums in our little Scottish group and we aim to meet up regularly.
Jonathan, who had no interest at first in reading any information on his condition, has now joined PSC Support and I feel that any information gained by him will be accurate and positive.
I have another son, Matthew who is 21 and my favourite pastime is spending time with my family. My hobbies include gardening, yoga, aerobics (always followed by cake, coffee and chat!) and hillwalking with my husband Graham.
I would like to be able to help provide the same support that I have received to other members in the future. A “wobbly day” can be so easily turned around with a few words of encouragement. I also feel that information on PSC Support provided by hospitals at the time of diagnosis would be invaluable.
Matt has a background in Marketing and communications within the IT industry. He helps out behind the scenes supporting the Trustees when PSC Support needs an external perspective on their web, social media and communications activities. He can often be found manning the registration desk at our meetings.