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AUGUST 2017 To find out more visit www.kidneyresearchyorkshire.org.uk

Fund News

A laughter filled Ripon Race Fundraiser was a fitting way to celebrate the life of a remarkable woman – Alison Crawford – who brought joy to the lives of so many.For the full story see page 7

A DAY AT THE RACES!

Welcome to the latest edition of Fund News! We hope you’ll enjoy reading all the good work which has been taking place around the region.

• Ripon Races Fundraising Event

• Kidney Research Yorkshire’s latest

funded grants

• “Where are they now” Dr Aravind

Cherukuri

PLUS• Getting to know Danni Hewson

• Just Giving fundraiser updates

• Update from last year’s ball

• Welcome to our committee

members.

• Details of our Annual Charity

Meeting

IN THIS ISSUE

SAVE THE DATE:Champagne Ball 2017Will be held at our new venue The Hilton Hotel, Leeds, Saturday 18th November 2017.Drinks reception 6.45. Live music, charity auction, cocktails and more!

See page 11 for more details

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Welcome! Want to receive our newsletter by email?

Please send an email to mo@kidneyresearchyorkshire.org.uk so that

we can add you to our mailing list

What we do... Living with kidney disease pervades every aspect of life- what you can eat, drink, your ability to work, have holidays, spend quality time with your family – all is adversely affected by this condition. It is for this reason that the Kidney Research Yorkshire was founded in 1970, to support research to improve the lives of adults and children who suffer from a variety of kidney disorders. The Fund supports projects all over Yorkshire supporting research to improve diverse areas of kidney disease and its treatment. Our Charity relies on donations to support everything we do, the main aim being to make a positive difference to kidney patients and their families. We therefore very much appreciate the donations made by the people who give, and are thankful for their generosity in helping us to work towards saving lives.

Kidney Research YorkshireSt Peg’s Mill Thornhill Beck LaneBrighouse HD6 4AH

Telephone: 01484 400430E-mail: mo@kidneyresearchyorkshire.org.ukWeb: www.kidneyresearchyorkshire.org.ukFacebook: www.facebook.com/KidneyResearchTwitter: @secretaryykrf

How to get in touch

Key StaffJulian Wiley ChairmanIan Firth Trustee and Head of Charitable ActivitiesVacancy Head of FundraisingAndrew Mooney Medical AdvisorVacancy Head of Marketing and CommunicationsBill Griffiths TreasurerMo Ashbridge Administrator

Our PatronsGrateful thanks are extended, as always, to all our patrons: The Rt Hon. Professor The Baroness Afshar OBE Professor Alex M Davison RD, MD, FRCP Trevor Gurney FCA Danni Hewson Tim Hogarth The Hon Simon Howard Sir Ben Kingsley Professor Graham A Leslie - Hon. DBA., CBE Matthew Lewis Jeremy Paxman The Lord St Oswald Kevin Sinfield Christine Talbot

If you would like to make a

donation, we’d love to hear

from you. Please take a moment

to fill in the form on page 19.

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What do you do? I’ve worked for BBC Look North for the last 15 years, I’ve been Business Correspondent for the last 3. My job allows me to meet people from right across Yorkshire and though I now live in the West I am originally from the East. My job can be stressful, particularly during live broadcasts, but I love it.

How did you get involved with Kidney Research YorkshireI met Julian and Dr Andrew Mooney at an awards ceremony I was hosting last summer. Kidney Research Yorkshire was the chosen charity and during the night I found out about the incredible work the fund is undertaking. When Julian asked me to be a patron I was honoured.

What do you hope to bring to your role as patron? I hope I can help generate a little extra publicity and help raise the profile of Kidney Research Yorkshire. For last year’s Champagne Charity Ball I even tried my hand at auctioneering. I’m no Tim Hogarth but thanks to the generosity of those present the evening raised a lot of money.

Has your life been touched by kidney disease? Thankfully my life has never been touched by kidney disease but I know what it’s like to be related to someone who needs a lifesaving transplant. Living with that kind of worry, pain and sometimes sadness is a challenge and the work Kidney Research Yorkshire is doing to help combat kidney disease can’t be overestimated.

Getting to know...Danni Hewson

Welcome Debbie AdamsKidney Research Yorkshire is pleased to welcome Debbie to our team! “My name is Debbie Adams. I was diagnosed with kidney failure at the age of five and am currently on kidney transplant number three which will be 11 in November!I have worked for the Ministry of Justice for 27 years but my real passion is music. I have helped organise some international festivals and have organised smaller events of my own. I was Deputy Chair of Southport Kidney Fund for 10 years before moving to Huddersfield in December 2016. I have been a patient representative on the Cheshire and Merseyside Kidney Care Newtwork Board and built connections

with key members of other charities. I think patient to patient relations are very important and would love to work on that basis here in Yorkshire if I get the opportunity. I am looking forward to working with Kidney Research Yorkshire in their endeavours to make kidney failure a thing of the past.”

Also a warm welcome to Helen Zhao, who is an intern from Huddersfield University. She will be working in the office along side Mo, helping with graphics and design and also organising events.

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It was founded in 2000, and by the beginning of 2012, Just Giving claimed that it had provided its services for more than 9,000 UK registered charities and 1.9 million fundraising pages for users, collecting over £1 billion cumulatively. Just Giving is important for Kidney Research Yorkshire as well having delivered over £20,000 in donations over the last three years. It is always interesting and inspiring to visit the Charity’s Just Giving page- where interesting and often inspiring snippets about our fundraisers are

Many readers of this Newsletter will know all about Just Giving - the global online social platform for giving to charity.

PLEASE DONATE NOW

Mark and Jo Robinson celebrated their wedding on 1st July 2017. Instead of asking for gifts they asked their friends and family for donations for Kidney Research Yorkshire because of the amazing care their children had received. Mark and Jo’s final fundraising total was £1715! Thank you Mark and Jo and many congratulations to you both!

there to see. If you haven’t seen it, have a look! It’s at www.justgiving.com/kidneyresearchyorkshire and the page also has links to the individual fundraiser’s pages.Here you will read about lots of fundraising initiatives that the Charity’s supporters have embarked upon – some several years ago and some more recent. The last six months have seen a number of highly successful fundraising events and you can read about them here…..

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SCARBOROUGH ZUMBATHONhall.She started to attend the classes and fell in love with the whole Zumba concept. Caroline went on to complete her Zumba Instructor training in Blackpool and joined the Zumba Instructor Network. Realising the importance of being properly qualified to teach fitness classes, she went on to qualify as a fitness instructor and joined the Register of Exercise Professionals. Caroline now instructs her own Zumba Fitness classes at Ayton Village Hall and East Ayton Primary School.If you wish to contact Caroline please do so at http://carolinewright.zumba.com

failure in 2006 and had to undergo 15 hours of kidney dialysis per week for the next four years. Over the years her health dipped severely while she waited for a suitable match to become available from the organ donor register.In March 2010, a match was found and she received a life changing kidney transplant at Leeds St. James’ Hospital. The transplant was a great success and her recovery was rapid and spectacular! After four years of a life changing illness, Caroline was suddenly well again, full of energy and keen to get fit. She looked around for local exercise classes and learned of a Zumba fitness class at a nearby village

Fitness Instructor, Caroline Wright raised a massive £1227.50 for Kidney Research Yorkshire by holding a two hour long Zumbathon in Scarborough in March.Kidney Research Yorkshire is particularly important to Caroline, mother of two, as she suffered kidney

Pentathlon heroes The Barrett and Black families participated in a family “pentathlon” during the month of March and raised £821.21 for Kidney Research Yorkshire. Dad, Tommy, suffered kidney failure in 2008 and has since had two transplants. The most recent in September 2014 was donated from his wife, Val. Unfortunately the kidney has been attacked by the “BK” virus and he is now being prepared to go back on dialysis. This has prompted us to raise funds for kidney research to help doctors at St. James with their work in this field. Anthony is the cyclist, Michelle is the swimmer, Rachel is the runner. Val is the fast walker and cross trainer specialist, whilst the two granddaughters, Saskia and Edie both attend Holmfirth Harriers. The Barrett/Black family had a target of £500 which they exceeded! “The staff at St James have been wonderful to Tommy over the past 9 years so we would like to show our support for them with this fund raising.”

Caroline Wright presents fund-raising cheque to Bill Griffiths of

Kidney Research Yorkshire

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Matt Welberry Smith, Renal Transplant Consultant in Leeds Teaching Hospital NHS Trust, received funding from Kidney Research Fund as well as from the Medical Research Council, Kidney Research UK and Leeds Charitable Trustees as a Clinical Research Training Fellow (2008-2012), looking at new ways to diagnose and predict delayed transplant function and acute rejection after kidney transplantation. “The support of Kidney Research Yorkshire was fantastic and enabled me to fulfil my research aspirations at an early stage. I continue to recognise Kidney Research Yorkshire as a critical component of building up kidney research in Leeds, as well as across Yorkshire. Having seen some friends enjoy the Tough Mudder event and wanting to promote the importance of kidney research, I decided to take part and raise funds for Kidney Research Yorkshire this summer.” Matt raised a massive £725 for us this summer, well done and thanks Matt. Take a look at Matt’s Just Giving page to see photos and there’s still chance to donate if you wish to support him. https://www.justgiving.com/fundraising/mattws

Tough MudderTough Mudder is a 10-12 mile mud and obstacle course designed to drag you out of your comfort zone by testing your physical strength, stamina, and mental grit. With no podiums, winners, or clocks to race against, it’s not about how fast you can cross the finish line. Rather, it’s a challenge that emphasizes teamwork, camaraderie, and accomplishing something almost as tough as you are.

Liz Mooney - “I don’t know if it’s true to say that I was looking forward to my first “Royal British Legion Major North” 10K Muddy Obstacle Challenge, but I was very highly motivated to do the best I can. After several years of having to concentrate on looking after my very young children, I have been delighted over the last few months to have a bit more time to myself as the children have got a bit older. I really hadn’t had any opportunities to spend time “on myself” or undertake any exercise regime, but I was keen to get back in to shape and get a bit fitter as soon as I had this spare time. Although this is a great idea, in practice what I really needed was something to motivate me. Firstly, having heard about these sorts of events I thought it would represent a real challenge, but to really get me motivated I wanted to do it for a properly worthy cause. My husband has been Scientific Adviser to Kidney Research Yorkshire for over 15 years. I have often heard him talk about how difficult and challenging life with kidney disease can be, how it affects every aspect of patients’ lives and how even treatments such as dialysis can be really hard to tolerate and live with day after day after day. I know that this indiscriminate condition can affect children and adults and strike without warning. I have also heard regularly about the outstanding work that the Fund supports.

I know that almost all the monies raised and given to Kidney Research Yorkshire go directly to research, as they only employ one less-than-full-time worker. As a result of this, and the careful governance arrangements around grant awards, the Fund supports research in Yorkshire – always aimed at improving lives of kidney patients – but it has an international reputation and really punches above its weight.” Read about Liz’s event here:-https://www.justgiving.com/fundraising/elizabeth-mooney1 Liz raised a huge £785 for Kidney Research Yorkshire through Just Giving but actually her final total was £916.25!! Well done Liz!

Matt Welberry-Smith

Liz Mooney (Centre)

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Rip-roaring Ripon Races fundraiser is the perfect tribute to Alison. A laughter-filled Ripon Races fundraiser was a fitting way to celebrate the life of a remarkable woman who brought joy to the lives of so many. Alison Crawford – who passed away on August 25th  2016 at the age of 61 – had been a devout racegoer in  Yorkshire  for all of her adult life.  Given that racing was one of her chief passions, Vicki Scott and Val Hartley, two of Alison’s many dear friends, decided that an evening at Ripon in aid of Kidney Research Yorkshire was the perfect tribute. As mother to Alexander, her greatest wish, when he became ill with kidney disease, was to be able to donate one of her kidneys. The discovery of her cancer denied her this opportunity but her wish was granted when Alexander received the incredible gift of a kidney

just before the start of 2017. The third race at Ripon was dedicated to Alison and Yorkshire Kidney Research, with Alexander presenting the award to winning jockey Jason Hart. “It was a wonderful evening celebrating my mother’s life, enjoying some great racing and raising funds for Kidney Research Yorkshire, which was a cause close to both her heart and mine,” said Alexander.   “I’d like to make a special thank you to Vicki and Val for their hard work in making the evening so special and to all friends and family who were there to make it such a successful event.”More than £10,000 was raised via the event – which took place on a June 21st  and included a three-course meal and an auction – on top of the £7,500 drummed up via the team’s fundraising page.

Alison herself was no stranger to fundraising, raising many thousands of pounds during her lifetime for medical charities such as Action research. You can still donate to Alison’s cause by visiting her just giving page www.justgiving.com/fundraising/alison-ykrf

Val Hartley & Vicki Scott presenting the final cheque to Mo Ashbridge at Kidney Research Yorkshire

Alison and Alexander

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LADIES WHO LUNCHLADIES WHO LUNCH EVENT FRIDAY 23RD JUNEWe had our first “Ladies Who Lunch” in the beautiful Woodman Inn, Thunder Bridge, Huddersfield, on Friday 23rd June. Tickets were an amazing £27 each with a gorgeous two course meal and a “welcome” glass of prosecco! Christine Talbot and Danni Hewson hosted the event and Tim Hogarth regaled us with stories from Antique TV programme, Dickinson’s Real Deal. We had stalls selling clothing, Almond of Huddersfield, make up and skincare from My Showcase and handmade cards by Phoenix Cards. We are planning to make this an annual event after the wonderful feedback we received from our guests. Please call Mo 01484 400430 if you wish to be put on our mailing list for next year.

AND FINALLY….. Many thanks to all those supporters who have raised money in many ways for our charity, which may have not been widely publicised, ranging from a plant sale in Keighley, donations in lieu of flowers at funerals, regular monthly donations and collection boxes placed around the Yorkshire area. All monies are gratefully received and with the help of ALL of our supporters we can continue to help fund valuable research into kidney disease. THANK YOU ALL!

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“It was with great regret that we recently reported the death of Walter Ratcliffe, at the age of 87, on 1st January 2017. Having been a committee member and Trustee of the Kidney Research Yorkshire for over twenty years, he proved a very important asset to the Fund, with a very sympathetic understanding of the problems and ongoing research into Renal Disease and its associated conditions. We became very good friends with Walter and Judith when Pam and I joined the committee and,

in addition to committee meetings, we enjoyed their company on numerous social occasions. In addition to having many Business and Freemasonry relationships in common, Pam and Walter met at the outpatients’ clinics, as both of them had been diagnosed with end stage renal failure, Walter in 1993 and Pam in 1995. Luckily both of them eventually benefitted from a Kidney Transplant. When we decided to promote the Fund with a regular Newsletter, Walter enlisted the assistance of his daughter, spending time in suggesting a new brand image and an excellent front page for the first edition. Whilst Walter suffered from more health complications latterly, making it impossible to attend meetings and social events, he remained in touch and we spoke regularly on the telephone, when his sympathetic knowledge of Renal matters and associated problems enabled him to give meaningful advice, which was very welcome and I will certainly miss this.”

Ian Firth remembers WALTER RATCLIFFEIn Remembrance...

DATE THURSDAY 28TH SEPTEMBER 2017TIME 6.30 FOOD RECEPTION 7.00 TALKS BEGIN 9.00 CLOSEVENUE GLEDHOW WING SEMINAR ROOMS 4&5. ST JAMES HOSPITAL. LEEDS LS9 7TF.TALK ONE 7.00 – 7.30 DR FITZPATRICK – HOW THE STRANG LEGACY HAS HELPED

CHILDREN WITH KIDNEY DISEASE.TALK TWO 7.30-8.00 DR DAGA – HOW CAN WE IMPROVE TRANSPLANTATION FOR

B.A.M.E. PATIENTS?

KIDNEY RESEARCH YORKSHIREANNUAL CHARITY MEETING

The Chairman, Trustees and Patrons of the Kidney Research Yorkshire are pleased to announce the date of their Annual Charity Meeting .

TO REGISTER YOUR INTEREST IN ATTENDING, PLEASE RSVP TO MO 01484 400430 OR MO@KIDNEYRESEARCHYORKSHIRE.ORG.UK FOR CATERING.

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Simon has his own reasons for helping with the evening, his wife, Heather, received a simultaneous pancreas and kidney transplant in October 2015 at Guys Hospital in London.“Heather has been a type 1 diabetic since she was a child and unfortunately experienced many of the complications suffered by long-term diabetes. Prior to the operation she was very poorly and had been on dialysis following the failure of her kidney, which in fact was a transplant from her mother 28 years earlier. She had lengthy tests at Guys to ensure she would be strong enough to face a further transplant and we were both very relieved when her consultant recommended she should go on the national transplant waiting list for a kidney and a pancreas. Throughout this time I could see Heather’s health deteriorating and then, a year later the call came through. Heather was at home on her own when the call came at 5am on a Saturday morning, the call everyone on the transplant list waits for. I was in Worcester and due to film Dickinson’s Real Deal so as Heather made her way to London I drove like a fury to meet her at Guys. Despite our haste we had a long wait without any guarantees the organs would be a suitable match but after examining Heather and deciding she was fit enough to face the operation, we were told the organs were a good match and the operation could go ahead. Heather went down fur surgery just before midnight and after six hours in theatre, I was there to meet her when she woke up in intensive care. The operation was a huge success and after a week in hospital Heather was discharged and came home. The transplant team at Guys monitored her very closely and she visited the hospital three times week for the first three months before transferring to our local

ANNUAL CHAMPAGNE CHARITY BALL 2016

Our annual Champagne Ball is one of our biggest fundraisers of the year and last year we made over £27,000 for life saving medical research. Our Scientific Advisor, Dr. Andrew Mooney as always gave a compelling talk about the importance of research into kidney disease and how our Charity helps the research.

Our auction raised over £14,000 and one of the winning bids was placed by Mr & Mrs Darren Stephenson to have a dinner cooked for 10 people in their own home by TV celebrity, Tim Hogarth. Assisting Tim was his fellow Antiques Expert, Simon Schneider who drove all the way from Brighton to assist Tim.

hospital in Brighton for on-going monitoring. Now, just two years later she goes every three months for a check-up and to date she has suffered no rejection. Her kidney function is excellent, better than mine in fact, and her new pancreas means that for the first time in nearly 50 years she doesn’t need daily injections and has perfect blood sugar readings. We are both very aware how lucky Heather was to be given this amazing gift and every day we thank her donor and the doctors that carried out the operation. Without the vital research that has been undertaken into transplantation Heather would not be here today. Thank you to everyone who has helped to raise funds for Kidney Research Yorkshire. Without your support it would be a very bleak outlook for Heather and others like her.” Accompanying Tim and Simon is the gorgeous Steiff Teddy Bear, which Tim has kindly donated to Kidney Research Yorkshire for our competition this year – Name the Teddy!! As you can see from the photos, the bear is quite large. The bear will accompany the Kidney Research Fund to all events we are arranging. Follow him on Facebook!! To take part in the competition you can either take part online via Facebook or contact Mo directly on mo@kidneyresearchyorkshire.org.uk Each guess costs £1 and you can pay by BACS – please note you will need to supply us with an email address for us to scan and email your raffle ticket. Or you can attend any event (or call in to the office at Brighouse) and buy a raffle ticket.

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Champagne BallKidney Research Yorkshire’s Annual

Saturday 18th Nov 2017

Individual tickets: £55 Table for 10: £500

To secure your place or for more information, please email Mo Ashbridge at mo@kidneyresearchyorkshire.org.uk or call 01484 400430.

Begin the festive season in style and help raise vital funds for life-saving medical research.

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Developing a resource to help patients choose between dialysis and conservative management by Dr. Anna

Winterbottom A multidisciplinary team of health professionals and researchers were recently successful in obtaining a Kidney Research Yorkshire grant to conduct a two year project. The project will develop a patient decision aid to help patients choose between dialysis and conservative management options. Dialysis treatments are burdensome and although they may increase length of life for many patients, those patients who are older and/or have other illnesses may find them particularly difficult to manage and there may be no improvement in life expectancy. Conservative management helps patients’ maintain their quality of life by treating their kidney disease symptoms. Decision aids provide information in a way that is structured to help patients to think about their choices. The decision aid will help patients’ think about how they want to manage their kidney disease as their kidneys begin to fail, in a way that best suits their health and lifestyle. The resource will also help kidney doctors and nurses discuss the treatment options with their patients. The project will commence in September 2017. For further information about this research please contact Dr Anna Winterbottom at anna@winterbottom.co.uk. Dr Anna Winterbottom, Dr Andrew Mooney, Dr Lynne Russon (Leeds Teaching Hospitals Trust), Professor Hilary Bekker (University of Leeds), Vikki Hipkiss (Bradford Teaching Hospitals NHS Foundation Trust).

Research currently being funded by Kidney Research

Yorkshire

Dr Hilary Becker and Dr Andrew Mooney

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Targeting a virus to save kidney transplants

I have not always worked on kidney disease; in fact my entry into this field has been rather circuitous in nature. As a virologist by training, I earned by PhD studying the links between hepatitis C virus infection and liver cancer. Later, as an independent researcher leading my own group, I studied the ways in which viruses cause other cancers. During this time I stumbled across an article describing how infection with a virus called BK – named after the initials of the patient in which the virus was discovered – was linked with kidney transplant rejection. The article both fascinated and horrified me in equal measure, describing how the immunocompromised transplant patients were unable to fight off BK infection and so were at great risk of developing a debilitating disease called PVAN, which could result in the loss their precious, long awaited, transplanted kidney. That there are few effective treatments to fight this virus made the article grimmer reading. At this point, I decided that I wanted to study this virus in an effort to find out how to kill it! However, funding for research is a cutthroat business and there are few opportunities to obtain funds for exploratory research. Thank-fully, this is where the Kidney Research Yorkshire enters the story. I was able to apply for a one-year pilot grant to establish BK virus research at Leeds. The importance of such small pots of research funding should not be underestimated, I most certainly would not have received funding to undertake this vital research into BK virus elsewhere! From those small beginnings, with the support and vision of Kidney Research Yorkshire, the group has now expanded and currently we are a team of four researchers with funding from a number sources. Again, with help from Kidney Research Yorkshire, we now work closely with clinical colleagues at Leeds and our ambitions are to reach out to colleagues throughout the UK who have an interest in kidney transplant diseases. My group now works on a number of projects aimed at shedding light on all aspects of BK infection, with the ultimate aim of identifying a way to treat those patients undergoing kidney transplantation. Amongst our BK discoveries are the world’s first high-resolution image of the virus particle, allowing us for the first time to peer inside the virus and explore how it is built. From this work we hope to generate new tools to prevent the virus from entering cells. We have also determined how this virus gets out of cells and most excitingly; we have identified a commonly prescribed drug that appears to effectively prevent BK infection. Thanks to Kidney Research Yorkshire we hope to make progress over the coming years to build on these findings and identify treatments for BK infection, to give kidney transplant patients peace of mind.

Cryo-electron microscopy generatedstructure of a BK virus particle.

Dr Andrew Macdonald

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This is the title of a meeting being held in London on July 20th. A group of retired medical and technical colleagues will discuss the early days of using computers to support dialysis and kidney transplantation in the UK. It is hard for present day staff to imagine an NHS that was largely run by the clinicians, with no IT equipment or Apps. Social media were unknown. Late kidney disease was very suitable for computer support, partly because there were a lot of numbers relating to blood tests (the computer = clever filing cabinet). Computers were used also to calculate dialysis ‘dose’ and to both show and analyse the trends in test results (the computer = calculator/intelligent display). In the 1980s the clinical staff directly responsible for the renal units went on an exciting exploration of the new technology. In the process their clinical task moved from passively awaiting and then reacting to clinical events towards

DR Eric Will tells us about his research

Witness Seminar: Perspectives on UK clinical renal computing 1979-1994

actively planning and controlling them. Treating kidney failure came to contain many fewer unwelcome surprises. Nationally, there was a mix of local renal unit computer projects and the installation in many units of a standard, but flexible, system for clinical support. The British Renal Computing Group (BRCG) was used to bring these initiatives together in an annual meeting, which consolidated the contribution from centres largely outside London and quite eclipsed parallel European developments. Putting together an oral history of that Group is the focus of this meeting, which will expose the origins of the modern UK Renal Registry (1995), Renal Patient View etc. Several computing projects developed in Leeds were successful at a national level, which makes the support of Kidney Research Yorkshire especially appropriate. It is expected that the proceedings will be made widely available on the internet.

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DOCTOR ARAVIND CHERUKURI After spending an amazing 9 years, 3 months and 2 days as a trainee in Renal Medicine in Yorkshire, I have made a career move across the Atlantic to work as a Post-doctoral research fellow in Dr. David Rothstein’s lab at the Thomas E. Starzl Transplantation Institute in Pittsburgh. I am writing this short note to share with and update all the people who have kindly supported me during my years in Yorkshire as to what I have been doing over the last three and half years. My stint in Pittsburgh started rather interestingly. I landed in Pittsburgh on a stormy winter night in December having just lost my wallet on the flight which itself was stuck on the tarmac for close to 6hrs caught in a snow blizzard. To add to my woes, my jacket proved little help in protecting me from the natures forces. I was always told that bad things come in threes and here ended the three bad things. It is with great joy that I report to you that despite the initial stormy wintery glitch, my research in Pittsburgh has been progressing very well. I have been studying the role of B lymphocytes (blood cells that are known to make antibodies) and the various chemical signals (cytokines) they secrete in kidney transplant rejection and transplant tolerance. I am completing a project in experimental animals that addresses a key question on the role of an anti-inflammatory cytokine called IL-10 secreted by the B lymphocytes in preventing transplant rejection. On a different note, we have made considerable progress in identifying a blood marker based on the relative secretion of pro- and anti-inflammatory cytokines by the B lymphocytes. This marker predicted transplant rejection well before it actually occurred and has now been tested and validated in close to 700 blood samples. More importantly, this blood test can potentially identify those patients who may benefit from the use of specific medications to fix the abnormalities within the B lymphocytes so that we can individualize the treatment of transplant rejection with a view to improve long-term transplant outcomes.

We are in the process of putting together a clinical trial with the NIH to test this novel approach. I can proudly tell you all that the basis for this work was a small idea that took shape in Leeds with the kind support from Kidney Research Yorkshire under the supervision of Dr. Richard Baker. I remain grateful to all the patients, volunteers and donors at Kidney Research Yorkshire and colleagues in Leeds without whose support this work would ever have taken shape. I miss you all dearly and best wishes to all of you.

Doctors we have funded and where they are now…

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Leave a gift to charity in your will

Every year, more and more people like to leave a gift to charity in their Will.

Most of our funds come from the generosity of people like you; but it’s a little known fact that gifts in Wills are actually our most vital source of income. Charitable legacies are the foundation for causes like ours and are

vital in continuing our work. Even a small amount can make a big difference.

That’s why we’re taking part in Remember A Charity in your Will Week, from 11th-17th September 2017.

Remember A Charity will be launching a radio station so that you can #HaveYourSay about the world you want to pass on. There will be all sorts of opportunities to share these stories throughout the Week!

The radio station will also be going on a national roadshow, visiting 5 cities at iconic venues from the 60s. The legacy roadshow will start in London on 11th September, before travelling to Bournemouth, Norwich,

Liverpool and Edinburgh and spending a day in each city.

Writing a Will is one of the most important things you will ever do. After you’ve taken care of your loved ones, you too can pass something special on by including a charity you care about.

Taking care of your loved ones and favourite charities is easier than you think. Visit www.rememberacharity.org.uk for more information.

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Have you ever thought:• what will happen to my hard earned cash when I die? or• how will I make sure the people I want to benefit from my

assets do so? or• how will I prevent a family fall out on my death? • who will deal with and sort out my property, cash and

investments on my death? Research shows that 60% of UK adults have not made a Will which means that on their death the law will decide through the Intestacy Rules who will inherit their estate. Only the 40% who have made a Will choose who benefits on their death. When someone dies without making a Will then the Intestacy Rules apply.

Scenario One The Intestacy Rules make no provision for beneficiaries who are not related by either blood or marriage. If you are in a relationship where you live together but are not married or in a registered civil partnership with your partner, then you may not inherit anything from their estate. Scenario Two The Intestacy Rules apply rigidly and take no account of your wishes. If you are separated from your spouse/civil partner but not divorced, then on death your estranged spouse would inherit at least part and potentially all of your estate.

Scenario Three The Intestacy Rules do not provide for second marriages. If you have children from a previous relationship but have subsequently remarried, how are you going to ensure that your spouse/civil partner is adequately provided for but that ultimately your children benefit from your estate?

Scenario Four The Intestacy Rules do not provide for assets to be held in a protective trust. If one of your adult children is experiencing financial or matrimonial difficulties, how can you make sure their share of your estate is protected?

If one of your children is a minor at the date of your death, how do you protect their share of your estate until they are old enough to look after it themselves?

Scenario Five The Intestacy Rules make no provision for inheritance tax (‘IHT’) mitigation. Depending on the value of your estate despite having a surviving spouse (who is exempt from IHT), tax maybe payable if the Intestacy Rules divide the estate between both a surviving spouse and children.

Scenario Six The Intestacy Rules make no provision for charities and do not take advantage of the charity exemption from IHT. IHT is payable at 40% if the value of your estate exceeds the nil rate band currently £325,000 for an individual, £650,000 for spouses/civil partners. The Residence Nil Rate Band was introduced in April 2017, this is currently £100,000 per individual and will rise to £175,000 by 2021 but only applies where someone owns a property which they leave to their “lineal descendants” which includes children, grandchildren as well as stepchildren. Gifts to charities are however exempt from IHT and if you leave 10% of the value of your estate to charity the rate of IHT reduces to 36%.

All the above scenarios can be provided for in an appropriately drafted Will. Your Will also appoints executors and so you choose who will deal with and sort out your assets on your death and make sure the terms of your Will are carried out. If you have minor children, your Will can also include provision for the appointment of guardians who will look after your children on your death. Having a Will in place will give you the reassurance and peace of mind that your estate will benefit your loved ones in the way that you choose. During September 2017 we are offering a 20% discount on the costs of making a Will on production of this newsletter. For more information, please feel free to contact Sarah Hodkinson at Schofield Sweeney Solicitors on 01274 377284 or sarahhodkinson@schofieldsweeney.co.uk

MAKE A WILL - it’s so important

SCHOFIELD SWEENEY SOLICITORS ARE THE PROUD SPONSORS OF THIS PAGE

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Cardiac dysfunction in chronic kidney disease Although a large number of chronic kidney disease (CKD) patients suffer from and die of heart disease, the nature of such heart disease is poorly understood. It is well known that patients with kidney disease have a ‘bulkier’ heart (left ventricular hypertrophy) compared to individuals with normal kidney function. Interestingly, this observation was first made by Dr Richard Bright over 150 years ago and later confirmed by imaging methods such as cardiac ultrasound and MRI scans. However, it is not known whether these structural changes have any functional consequence. It is essential to study the effect of kidney disease on the heart’s function (cardiac function) as heart failure is the predominant type of heart disease in patients with kidney disease. It is also important to study cardiac function in kidney patients without any pre-existing heart disease to clearly assess the effect of kidney disease on cardiac function. Furthermore, it is also important to assess cardiac function in patients who had not yet developed symptoms of heart failure in order to detect any early cardiac dysfunction (abnormal function). Most studies that evaluated cardiac function did so by measuring resting function of the heart. Such evaluations are less likely to reveal early cardiac dysfunction because of the following reason. When a heart begins to fail, compensatory mechanism will be activated in order to maintain the heart’s resting performance within as normal a range as possible. Its peak performance is, however, compromised and diminished. It is this diminution that represents the extent of its failure and needs to be measured to obtain the best estimate of true pump dysfunction. The difference between the heart function at rest and peak performance is called as cardiac reserve. Our recently published study1 quantified, for the first time, the effect of kidney disease on cardiac reserve. We employed a specialised exercise test to measure the cardiac reserve of CKD patients. The results of our study showed that cardiac reserve is diminished by nearly a third in advanced stages of kidney disease compared to control subjects. The results also showed similar changes of lesser severity even in patients with early stages of kidney disease (Figure 1). More importantly, this reduction is seen in otherwise fit and well patients with no heart disease or diabetes implying that kidney disease per se affects the cardiac reserve. The study also showed that the cardiac pump’s ability to generate blood flow and pressure was impaired in kidney disease not unlike patients with established heart failure albeit of lesser severity. This demonstrated that there is covert heart failure in kidney disease which if left untreated could

develop into symptomatic heart failure. This is the first time such a hidden abnormality is demonstrated in kidney disease and we believe that this study will open new avenues of research that will help to identify the important factors that lie behind this abnormality. More importantly, strategies that help to reverse this functional abnormality may become cornerstones of kidney disease management in the future.

by Dr. S. Chinnappa

Reference1. Chinnappa S, White E, Lewis N, Baldo O, Glorieux G, Vanholder R, El Nahas and Mooney A. Early

and asymptomatic cardiac dysfunction in chronic kidney disease. Nephrol Dial Transplant. 2017 May 19. doi: 10.1093/ndt/gfx064. [Epub ahead of print]

Figure 1: Peak cardiac power (CPOmax) showing graded decline across the study groups. CKD: chronic kidney disease, HF: heart failure. *P<0.005 vs Control on Bonferroni post hoc test

Kidney Research Yorkshire Newsletter Aug 2017

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Figure 1: Peak cardiac power (CPOmax) showing graded decline across the study groups. CKD: chronic kidney disease, HF: heart failure.

*P<0.005 vs Control on Bonferroni post hoc test Figure 1: Peak cardiac power (CPOmax) showing graded decline across

the study groups. CKD: chronic kidney disease, HF: heart failure.*P<0.005 vs Control on Bonferroni post hoc test

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