WhispersAutumn 2011 www.kidneysforlife.org

IN THIS ISSUE Christmas Cards on Sale We Made It

The Manchester Children’s Transplant Games Team attended the 2011 Transplant Games in Belfast in August... With your help!

See the fantastic range we have on offer this year and find out how to order yours

Love at First Sight for Recipient Pair!

Firstly, Denise Roberts, Manager of the of 13 transplant athletes from the Royal Children’s Transplant Team would like Manchester Children’s Hospital who to say ”Many thanks to all those who took part in a variety of events including supported us in raising funds for the cycling, table tennis, badminton, ten Team to get to Games, particularly pin bowling and athletics as well as to Kidneys for Life, the Games mean participating in a very hectic social an awful lot to the children and their programme. The team won a total of Tony Kershaw & Mike Kewley families and thanks to the support 26 medals, made up of 13 Gold, 8 we have received we were able to Silver and 5 Bronze medals. On top of ...AND MUCH MORE have our best games yet. We’re the fantastic medal total we are also already looking forward to next proud that one of our children, Riley year at Medway.” Greenwood, won the Pauline Andrews trophy for the ‘Best Under 5yr Old’ Kidneys for Life The team set off from the Children’s and our Swimming Relay Team won a fundraising for MINT Hospital early one rainy Thursday trophy for ‘Best Swimming Team’. morning in August! The team consisted More pictures on page 2... Charity number 505256 Page 2/3 Whispers

More photos from the Children’s Transplant Games... Celebrations... Evan’s 60th Birthday Alison Morton’s Celebrations Birthday Celebrations Alison recently organised a party to celebrate her birthday and as her friend Sarah May had recently undergone a kidney transplant at the MRI asked for donations to Kidneys for Life in lieu of gifts.

Last year, Sarah at the age of 46, a mother of 3 was enjoying life to “In July 2011, I achieved the milestone the full and training for the Three age of 60 years, which of course is Peaks challenge. Out of the blue, the new 50! I decided that I wanted to as a result of routine GP tests, Sarah celebrate this both with my family in was diagnosed with Kidney Failure. Armagh, Northern Ireland and friends Within three weeks Sarah had lost and relatives in Saddleworth, Oldham. virtually all kidney function and My wife Hilary organised an evening started a dialysis programme which meal for 19 in Northern Ireland and quickly progressed to three sessions co-ordinated a Sunday high tea with fizz a week. Sarah am fortunate in that garden party for 40 at our home. The her brother volunteered to donate garden is not large so there was some one of his kidneys and the last minute panic about being able to fit operation took place at about everybody in. the time of the party.

I have polycystic Kidney disease, as did Sarah said “There are many my mother and brother and all three of us other patients who will wait had transplants. I had mine in September years for a donor and others 1999 at MRI. Each of us, thanks to the who cannot have a transplant generosity and gift of donor families have at all. For those people I want been able to live full and positive lives. to help research into better Consequently, I wanted to raise some pre-screening and treatment money for “Kidneys for Life” as a small as well as improving the facilities acknowledgement. I asked for donations during dialysis with simple things in lieu of presents and also encouraged like a TV or radio which will help them everyone to consider registering as spend their days in better spirits.” a donor. We had two truly happy and Alison & Sarah would like to express successful events that also had perfect their thanks to everyone concerned weather. With gift aid added our final total who helped raise over £1,500 from raised was £1,421.25. With the continued the celebration. care of all the Consultants, Doctors, Nurses, other staff behind the scenes, Out Patient staff and Secretaries at MRI I am hoping that in 10 years time I will be able to repeat these celebrations.” Whispers

With Thanks To... Whilst we recognise the help of all patients and volunteers who have supported Kidneys for Life in the past, we have highlighted just a few from the last six months. Lancashire Glossop Allithwaite Ladies NFU Golf Day Bowling Club

We would like to thank Lancashire County Ladies Social Section – National Farmers Union for their fundraising efforts during Mrs Mabel Holden’s year of office as County President representing the Clitheroe We had another fantastic day of golf in branch. A fantastic sum of £4,120 July and the weather was extremely kind was raised during that time and we in that the sun shone for the whole day. Thank you to everyone who took part in would like to pass on our thanks We would like to thank all the sponsors the Charity Event at Allithwaite Bowling to everyone concerned it is really and teams involved and particularly Keith Club on 30 July who raised £470 appreciated and is of enormous help Clegg & John O’Grady for organising the from the day. It was a pleasure to be for our research projects. day to raise money for Kidneys for Life. invited for the day and the event went extremely well and everyone enjoyed themselves even though there was Renaissance Lodge some competitive bowling to win the bottles of wine by accurately putting Our thanks once again for the support their bowling ball in the “circle”! of Renaissance Lodge (Masons) at the Manchester Charity Giving Evening. Once again, thanks to Alison & Calum everyone who has helped support Kidneys for Life. Congratulations to Alison & Calum who got married on 23 April this year and asked for donations in lieu of gifts to Kidneys for Life for which we thank them very much and we wish them all the best in their married life. Page 4/5 Whispers

In Memory of Paul Heapy

Paul Heapy was diagnosed with acute renal failure at the age of 23 and had several operations and dialysis before receiving a kidney transplant in June 2009. He sadly endured a series of setbacks and following a three-month stay in the MRI, died in February 2010 aged 31. He is survived by his parents Karen and Dave and younger brother Steven.

Paul who lived in Blackley used to people came along pushed the total work as an order picker for Office to £9,000. Depot. Jimmy and Paul played football together for many years for the local Karen & Dave Heapy would like to team The Bluebell, in the Ashton thank every single person who helped, Sunday League. The team is now called took part, sponsored or supported Moston Labour Club and play in the these events we could not have done Tameside league. All the lads have this without them in particular John been fully involved in all the fundraising Sutcliffe and Jimmy Cullen. In addition events and have been very supportive a big thank you to The Royal Mail for to the family especially to Steven. providing the transport for the bike ride organised by Lisa Bell, the North Area Jimmy said: “Paul was a lovely lad, Sorting Office who gave donations and very quiet and private, but just one gave up their time to drive the cars of those people who you click with and Office Depot for the use of their instantly and get on with. He fought vans to transport the bikes back from against all his setbacks with good Blackpool and to the live band Mimik nature and determination and was for performing at the charity night. Paul’s friend, postman Jimmy Cullen looking to the future when he was Thanks also goes to New Leaf Press, said: “We want to do something dealt a final cruel twist of fate by Royal Bank of Scotland, MEN Media, positive in Paul’s memory, he was having a stroke which he never Moston Labour Club Football Team, looked after so well throughout recovered from.” Rhys Knowles, Bernard Manning and everyone who donated prizes and gave his illness by the Renal Transplant A group of 22 of Paul’s family and Unit at the MRI and to show our their support to all the events to help friends part in a Manchester to raise a fantastic £9,000. appreciation for their kindness and Blackpool bike ride in July 2010, skills, we want to donate a piece through which they raised nearly Karen said “Paul would not believe of equipment for them.” £2,500. Royal Mail gave Jimmy the so many people have done so use of two vans to collect the riders much for his memory. He was such and their bikes and bring them back. a quiet lad who must have made a Two of the group also did a sponsored big impression on a lot of people. parachute jump this included Paul’s We are so proud of him.” best made John Sutcliffe which added a further £2,000. The Renal Transplant Unit has now received a donation of a ‘Spacelab Landlord Rhys Knowles, hosted a Monitoring Station’ from the family Funday at the Owd Betts pub in Norden for which they are extremely grateful in August 2010 and raised over £500 and will be invaluable in supporting pounds. A charity night in September patients such as Paul in the future. at the Embassy Club where over 200 Whispers

REMEMBERING... We would like to thank everyone for their kind contributions made in memory of:

Sharron Adams Paul Anderson Barbara Beard Alexander James Bell Edward Bell Betty Birtles Margaret Booth Jeff Botham Holiday Mary Bowyer Thelma Brown Insurance Joan Cooper for Kidney Alfred Crowther Sheila Davies Patients Donald Haigh Dominic Haslam Catherine Joddrell Lydia Kolomyjec Grazia Pascalle Patti Turner-Smith Leslie Turton We have recently updated and put up on our website a list of Margaret Whittington holiday insurance companies Harry Yates who can offer insurance for kidney patients. These are not recommendations and have been reproduced with the kind We would also like to permission of North West Kidney Patients Association. Suggestions acknowledge the kind legacy and comments welcome. from Bryngwyn Griffiths which was received recently. Page 6/7 Whispers

Santa Dash 2011

Join us in a Santa 5km Dash on Sunday, 11 December in Heaton Park, no previous experience is required and with a little bit of training the 5km will be easily within your capabilities. The spirit of the event is “taking part” not “winning” so you can Raising Money for run, walk or jog – you decide! Please see our website or get in Kidneys for Life touch for more details.

Online or...... by Text!

We are often asked how you can raise to do this and raise money at the same Kidneys for Life will be amongst the first sponsorship online if you are taking time in memory of Tracey Patient (nee charities in the country to use its own, part in a challenge or sponsored event. Chapman) who sadly passed away on unique personalised text code, MINT01 Kidneys for Life uses Virgin Money the 7 May this year. to raise funds using JustTextGiving by Giving or BT Mydonate as both of these Vodafone. This is a brand new, free sites charge very little for administering service for charities that has no set up the collection of the monies so we or fundraising costs for charities, no receive the most from the donations network charges for people making made. You can set up your own page donations and every penny donated and personalise it as you wish to include goes to charity. Gift Aid can also be text and photos. added to donations. These sites can be accessed from From today, supporters of Kidneys the following links: for Life can make donations of up to www.virginmoneygiving.com £10 by texting MINT01 and either 1, www.btplc.com/mydonate “Tracey was a remarkable person who 2, 3, 4, 5 or 10 to 70070 to make their For both opt for “Start Fundraising” will be sadly missed by many people. donation. The text message is free and all of the donation will be You can fundraise for a variety of things Her positive attitude and smiley face passed to Kidneys for Life. including sponsored events, celebrations has been an inspiration and we have or your own personal challenge using been truly blessed to know her. Tracey one of these online fundraising websites. was a long term patient of MRI Renal Both Lorenza and Suzanne, Dawn & Unit. Tracey’s sister Suzanne Watson Kirstie did just that.. and her friends Dawn and Kirstie Fielden-Cash did a Tandem Sky Dive One of the events you could take part in from 10,000, free falling the first is a “Tandem Parachute” – Three friends 5,000 feet and parachute the rest.” did just that on 13 August. They decided Well done girls !!! Whispers

Lorenza’s Cycle Ride

“Back in 2008 I suffered from an research does until it affects you unpleasant kidney infection, which personally. So as I got better I didn’t developed into some more kidney want to forget how grateful I felt problems. Between 2008 and towards them. I have started cycling 2010 I was able to experience the as my health recovered as I find it wonderful work and care of the enjoyable, good for me and good for MRI Renal Unit, who looked after the environment! I decided to take me incredibly well, sorted me out part in the Manchester to Liverpool and got me back to my usual self. charity bike ride this year, nearly also delighted for all the support You don’t realise what a wonderful 40miles! The sense of pride upon I received for my sponsorship for work doctors, nurses and medical completing was incredibly and I was Kidneys for Life.” Lorenza Casini

National Innovation Award for Renal Team

The innovative home haemodialysis programme offered to renal patients has attracted an NHS Innovation Challenge winning prize for Dr Sandip Mitra and his multi-disciplinary team at Manchester Royal Infirmary.

Launched five years ago, the been trained up to dialyse at home. attention of both national and local programme empowers patients to The programme which also won the media, including coverage in The self dialyse at home, with significant NICE excellence award for 2011 is Guardian, Independent, Nursing benefits both in clinical outcomes, being adopted in several centres Standard, BBC North West Tonight efficiency and cost savings. Patients across the UK. and Granada Reports interviewing are able to live a more normal staff and patients. Dr Mitra said: “I The award was acknowledged by lifestyle, with a more liberal fluid and am delighted to receive this award on Health Minister Simon Burns who diet intake, and free from having to behalf of the team and dedicate it to said he was impressed by the all our patients who have made that come into hospital several times a work of the MRI renal team. The extra commitment to transform lives week to dialyse. 180 patients (up to programme has also attracted the on dialysis.” 15% of renal patients) have so far Page 8/9 Whispers

Great Love at First Sight for Manchester Runners Recipient Pair 2011

We had 60 runners in this Mike Kewley & Tony Kershaw met on Ward 9 in 2005 having year’s Great Manchester both suffered from kidney disease and on the kidney Run who raised over transplant waiting list. They were both excited to receive the £7,500 a brilliant amount. call that a kidney was available to them and it transpired that Well done to everyone they were each fortunate to receive a kidney from the same involved it was a fantastic cadaver donor. After that “it was love at first sight” according effort on such a miserable to them both! day and in particular our Sumo Wrestlers !

We are looking for runners for the Pie Maker at Grandma Wolfenden’s in Great Manchester Run 2012 which Prestwich. takes place on Sunday, 20 May and Mike was diagnosed with kidney failure if you are interested in taking part in 1997, a genetic condition called Focal for Kidneys for Life you might like Segmental Glomerulonephritis inherited to register for your own place via from his mother who suffered from the www.greatrun.org and the cost is disease from 1984 until her death in £37.00 and just let us know once 1998. Up to and following his transplant you have a place and we can sort Mike has continued to maintain his full out a t-shirt or running vest and a time job and also finds the time to work sponsorship pack. alongside his wife on their allotment, play Charity places will also be available crown green bowls, play golf (very badly) and we won’t find out about these Tony was identified as suffering from and enjoys walking in the Lake District. until the end of the year, if you would Alport Syndrome, a genetic condition He also finds time to help us sell our like one of these places all we ask is which was originally identified in a British charity Christmas cards and you might that you pledge to raise a minimum family by Dr Cecil A Alport in 1927, when remember his article “House of Cards” in of £100 (which includes the registration he was 31 years old. This disease runs a previous Whispers. fee) and we will provide a t-shirt or in families and his brother suffered with The two still keep in touch and this year running vest and a sponsorship pack. kidney disease for a number of years they met up at the Allithwaite Bowling If you are interested please do get having received 2 kidney transplants Club Charity Event on 30 July for an in touch with Irene Chambers either but unfortunately passed away. Tony afternoon of crown green bowling and on 0161 276 6671 or email used to be a builder by trade but found the odd alcoholic refreshment which they [email protected] it just too much after the transplant and other health issues, he is now the Chief can now both enjoy. Whispers

Renal Team and Research Project Breaking News...

Louise Conway Milind Nikam New Renal Consultant Retirement – Kate Hillman Kate Hillman did her clinical training at Cambridge University, then medical/renal training in London. At University College London Kate undertook her PhD looking at ATP signalling in kidney development, which really started her clinical interest in polycystic kidney diseases (eg ADPKD) and other genetic renal diseases. Kate then joined the Royal Free Hospital as a Consultant Nephrologist where she set up a dedicated Genetic Renal Disease Louise who many of you may know Milind is training to be an adult clinic seeing a wide range of disorders retired at the end of July. Louise has nephrologist, he is currently leading the including ADPKD, Alports, Fabrys. been a nurse in the Renal Department Vascular Access research project along VHL and other inherited kidney cancer since she finished her training and in with Dr Sandip Mitra, Prof Paul Brenchley, syndromes. 2003 was made Lead Nurse for Renal. Dr Angela Summers and Mr Afshin Here at the MRI Kate is hoping to We wish Louise all the best in her Tavakoli. The project focuses on vascular continue this work and she is currently retirement. access for haemodialysis. Vascular involved in the newly started Paediatric access such as a fistula or ‘line’ provides Renal Genetic Clinic with Professor Woolf Dr Katy Latham access to patient’s blood stream to and Dr Kerr. Also the design of a similar enable dialysis. It plays a vital role in the clinic to accommodate Adult Nephrology well-being of a patient on haemodialysis. patients and their families, in whom The Manchester Vascular Access Genetic disease has been diagnosed (MANVAS) study aims to improve our clinically or in whom there is a probable understanding of how fistulae mature heritable condition. This will enable and work. We are hoping to recruit 500 more robust genetic diagnosis where patients across Manchester and this appropriate and improve the information is due to start in the next few weeks. given to patients and their relatives There are a number of other studies regarding not only their own diagnosis within the project including the OPEN and likely prognosis, but also the risks to study which is designed to evaluate the relatives and future offspring. OptiflowTM device designed to improve We’d like to offer our congratulations fistula maturation, for which we have to Dr Katy Latham and wish her well in recruited more than 30 patients onto the her new position as Deputy Laboratory study and hope to recruit around 80. In Director at the Anthony Nolan Bone addition, the clotted fistula study which Marrow Trust in the Royal Free Hospital, will analyse whether declotting fistulae London. works and what we can do to improve Katy worked in the Transplantation on the longer-term results. Finally, we are Laboratory for nine years, during which also planning a study to understand the she completed all her training, did a PhD role of vascular stem cells in the biology and passed her Part 1 Exams for the of fistulae. Royal College of Pathologists. It’s great to see her move onwards and upwards but we’ll miss her very much. Thank you to all those of you who purchased Alternatively you can purchase cards online at Page 10/11 Whispers our Christmas Cards last year either online, www.christmas-cards.org.uk/kidneys through the Fundraising Office or at the Or in person from: various Charity Card outlets in Wilmslow, Sale, Altrincham, Hale, Macclesfield and Wilmslow Library - 29 Oct to 10 Dec Knutsford. We raised over £7,000 from our Sale Waterside - 14 Nov to 5 Dec sales last year and all profits went directly Altrincham Library - 5 Nov to 3 Dec to Kidneys for Life. Hale Library - 7 Nov to 5 Dec Charity If you could help this year by purchasing our Macclesfield Library - 29 Oct to 3 Dec cards it would be very much appreciated. Knutsford Civic Centre, Cinema Building Christmas You can complete the order form below and - 5 Nov to 7 Dec collect your cards from the Fundraising Office at the MRI (Second Floor in entrance to Renal Research & Transplantation Labs) and the Cards satellite dialysis units by arrangement.

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A) Red Star F) New Born King K) Holding on Size:203x148mm Size:150x105mm to Christmas WhispersWhispers Red Foil and holographic Embossed with gold foil Size:125x125mm with insert £4.00 for 10 Gold foil finish £4.95 for 10 £3.50 for 10 G) Night before B) Seasonal Wreath Christmas L) Santa’s Little Helper Size:203x148mm Size:125x125mm Size:140x140mm Finished in gold & red Embossed design Contemporary foil with insert £3.75 for 10 christmas design £4.95 for 10 £3.75 for 10 H) Is Santa Here Yet C) Red Bauble White Tree Size:125x170mm M) Robin on a Lamp Post Size:160x160mm Greeting reads Size:195x195mm The greeting inside Silver foil stars and “A Meery Christmas & Finished in silver foil all cards reads: writing with insert a Happy New Year” £4.00 for 10 £4.25 for 10 £3.25 for 10 N) Three Kings With Best Wishes D) Christmas Ornament I) Reindeer Sleigh Size:122x170mm for Christmas and Size:160x160mm Size:173x65mm Embossed and finished Embossed finish with insert Cutout design in gold foil the New Year £4.25 for 10 £3.50 for 10 £4.00 for 10 E) Postbox Robin J) Penguins O) Snowman Last orders for Size:150x150mm Size:120x170mm Size:146x104mm Cutout design High gloss finish Designed by Hattie Christmas delivery £4.25 for 10 £3.75 for 10 Dufton of Manchester must be received by High School for Girls £4.00 for 10 Friday, 3 December

Order form Personal details Code Description Cost Quantity Total Complete your name and address and just tick the boxes below its that simple: A Red Star £4.95 Name ……………………………………………… B Seasonal Wreath £4.95 Address ……………………………………………… C Red Bauble White Tree £4.25 Postcode ……………………………………………… D Christmas Ornament £4.25 Email ……………………………………………… E Postbox Robin £4.25 Tel ……………………………………………… F New Born King £4.00 How would you like your cards to be delivered? G Night before Christmas £3.75 I will collect my cards from the Fundraising Office H Is Santa Here Yet £3.25 near the Transplant Labs I Reindeer Sleigh £3.50 Please deliver them to me at Ward…… (P&P free) J Penguins £3.75 Please post them to my home address K Holding on to Christmas £3.50 (P&P applies, see below) L Santa’s Little Helper £3.75 Use giftaid to make your donation worth more. For every pound you M Robin on a Lamp Post £4.00 give to us, we can get an extra N Three Kings £4.00 25p from the Inland Revenue. O Snowman £4.00 Complete your name and address above and just tick the TOTAL box and sign below - it’s that simple. P&P (If applicable) I want all donations made for the last six years and all future donations to be gift aided until I notify Donation* - Thank You! you otherwise. To qualify for giftaid what you pay in Grand Total income tax or capital gains tax must at least equal the amount we will claim in the tax year. Post and packaging For orders up to £15 - £3.00 Signature ……………………………………………… For orders between £15.01 and £45 - £4.00 Date ……………………………………………… For orders over £45 - £5.00 * Donations will go towards Kidneys for Life Registered Charity No: 505256 Page 12 Whispers Designed by Creative Lynx www.creativelynx.co.uk

Get in Touch...

If you would like further information on any of the articles in this edition of Whispers or you would like help with fundraising ideas do please contact Irene Chambers.

Irene Chambers Donations Fundraising Manager When making donations to Kidneys This means that £10 can be turned Tel: 0161 276 6671 for Life or collecting sponsorship for into £12.50 just so long as donations Email: [email protected] events such a runs, walks etc please are made through Gift Aid. Imagine don’t forget to: Kidneys for Life fundraising for MINT, what a difference that could make, The Renal Unit, and it doesn’t cost you a thing. Manchester Royal Infirmary, Donate online at: Oxford Road, www.kidneysforlife.org Manchester M13 9WL Using Gift Aid means that for every pound you give, the charity you are supporting will receive an extra 25 pence from the Inland Revenue, helping your donation go further.

Make a Donation and Help Make a Difference...

MINT has a proud history of being at the forefront of many acclaimed scientific discoveries and internationally celebrated successes. The research work undertaken by the team working in MINT offers real hope for patients both now and in the future. Please help us by making a donation...

To make your donation please fill in your name and address below and return to Irene Chambers, Kidneys for Life fundraising for MINT, The Renal Unit, Manchester Royal Infirmary, Oxford Road, ManchesterM13 9WL

Don’t forget to giftaid to make your donation worth more (see above).

Name …………………………………………...... ………………………… Address ………………………………………...... …………………….…… ……………………………………………… Postcode ………………………… Signature …………………………………. Date ……………………………… I enclose a cheque made payable to Kidneys for Life for £ ……………… I want to giftaid my donation*

* To qualify for Gift Aid what you pay in income tax or capital gains tax must at least equal the amount we will claim in the tax year.