making every kidney count

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Making Every Kidney Count appeal brochure

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Page 1: Making Every Kidney Count
Page 2: Making Every Kidney Count

I was a 9 month oldbaby when my kidney operations andtreatment started. As I got older, theregular visits would see me hooked upto drips, tubes and machines that madefunny noises. I knew that they werehelping me to get better, but it waslonely. To take my mind off it, I wouldpass the time doodling, writing down mythoughts and collecting stories andphotographs - ultimately it led to mycareer as a Creative Director. My ownexperience as a kidney patient,alongside the amazing work that KidneyResearch UK are doing has inspired meto craft this booklet for you in thesame way I would have done in thehospital, all those years ago.I hope that with yoursupport, together we canmake every kidney count.

Ian MacArthur

Page 3: Making Every Kidney Count

M aking every kidney countTh ank you for taking the time to read about this Appea l and the life-c h angingwork it will make possible. Kidney Researc h UK h ave committed themselvesto ra ising £3million to accelerate groundbreaking researc h into improvingtransplantation. It ’s simple, Kidney d isease kills . . . but hopefully the stories inthis book will inspire you to help us save more lives.

Our JoshuaJoshua was born a big, hea lthy, baby.But after a few weeks he began to loselots of weight and beca me seriouslyunwell. After some tests we were toldthat his kidneys were fa iling.It hit us like a truck. One kidneycouldn ’t be saved. The rema ining oneis functioning at 18 % and a lthough med ication is slowing down the deteriorationo f his surviving kidney, it ’s simply a matter o f time before he needs a transplant.Both mysel f and my husband Ivor h ave been tested and th ankfully could be goodmatc hes. If Joshua dec lines further then we will begin the transplant process. Anew kidney should last most o f his sc hool life, then he is likely to need another.

The work th at Kidney Researc h UK does gives us the hope th at Joshua will growup and lead a good life. We truly believe this Appea l will transform the liveso f people less fortunate th an us.

xxx Joshua ’s Mum & Dad

Page 4: Making Every Kidney Count

Why are our kidneysso important?

Super filtersthat cleanyourblood

They clean all yourblood 40 times per day

Dirtybloodin Clean

bloodout

Wasteleaves thebody

They alsoregulateyour bloodpressure

It’s the most amazingorgan in the human body!

Theykeep

the wholebody healthyand working...

from the heartand skin to the

bones anddigestive system

Page 5: Making Every Kidney Count

What happens when theystop working?

Chaos. Every cell in the body relies on your kidneys.

A direct link with the heartmeans a high risk of cardiac failure.

You become critically ill.

Can’t you go on Dialysis?Dialysis is oftendescribedas “life supportwithno life”.

Every timeyoudialyse it places additional strainon theheart.

Dialysis isnot a cure.

Can’t you have a transplant?

More than6,000people areon the listwaiting for a kidney.

Transplants currently last for anaverageof 10 to 15years.

A cocktail ofdrugs isneeded tostop rejection.

Page 6: Making Every Kidney Count

How do we start

?Whatwith? -Wewant to raise £3million.

Why? - No-one else in the UK is focusedon tackling this vital issue.

How? - Our expertisemeanswe can selectthe best research team in the UK toaccelerate the pace of innovation.

Greater viability

Less rejection

More kidneys

= increasing the opportunitiesfor kidney transplantation.

= being able to accept and keep thedonated kidney functioning.

= new techniques mean more kidneys available.

Page 7: Making Every Kidney Count

OOnnee ppeerrssoonn ddiieess eevveerryy ddaayyiinn tthhee UUKKwwaaiittiinngg ffoorr aa kkiiddnneeyy..

Page 8: Making Every Kidney Count

Lydia (aged 21)At the age of 18 my hair startedfalling out and I always felt tiredand thirsty. I went to the doctorand initially they thought I wasanaemic but Later that day they

phoned me back urgently and told meto find my way to a hospital

immediately. That day my life changedforever. I only had one functioning

kidney and it was failing.

I’ve been waiting for a kidney transplant for three years now.I can no longer breathe well enough to go for walks or dance withmy friends. Each night I spend seven hours on a dialysis machine but

it’s slowly taking its toll. Some days I wake up feeling so sick,I know this can’t carry on much longer.

“For young patients on dialysis, with their life ahead

of them, waiting for a transplant is like putting life on

hold. Having the energy to do the things they want to

do, that their peers are doing, on top of their

treatment schedule is exhausting. Also every year on

dialysis is a lost survival opportunity.”

Professor Simon Davies

Professor of Nephrology and Dialysis Medicine,

Director Health Service Research Unit at the Institute for Science and Technology in Medicine,

Keele University. Consultant Nephrologist, University Hospital of North Staffordshire.

Page 9: Making Every Kidney Count

Christy (aged 28)In 2006 my appendix ruptured and caused severe blood poisoning.After numerous operations and a long period in intensive care, itbecame obvious that Iwould need a kidneytransplant. Luckily myfiance, Steve, was amatch and in 2009donated one of hiskidneys to me.Unfortunately during theoperation something wentbadly wrong and thekidney couldn’t be kept viable.I will always be grateful for the chance Steve gave me, but unlessmore is done to keep kidneys healthy during the procedure, thenmore lives could be lost. Every day I hope for another chance.

“Organs are just not meant to be removed from their bloodsupply. But that is just what has to happen when youmove an organ from one person to another. And this cancause great, sometimes irreversible damage to the organ.The challenge is to find ways to minimise that damage andthus prolong the life of this precious resource."

Professor Anthony N Warrens DM PhD FRCP FRCPath FEBS FHEAPresident, British Transplantation Society, Dean for Education, Barts and The London School of Medicine andDentistry, Professor of Renal and Transplantation Medicine and Honorary Consultant Physician.

Page 10: Making Every Kidney Count

Alex (aged 11)My symptoms first started when I wasfour years old. I’ve got this conditionwhere my body attacks my own kidneys.

I started off taking ten differenttypes of medicine, three times a day,

to stop me getting worse. But itdidn’t work. I ended up on a dialysismachine for 10 hours each night andmy hospital treatment meant I could

only go to school two days each week.I wouldn’t normally be able to have a transplant, because my

body will attack the new kidney, but the doctors decided I musthave a break from dialysis so I can recover and grow a bit.

In January I had a transplant which will hopefully last for acouple of years so I can play and eat like my friends. ThisAppeal could help doctors make my new kidney last longer.

“Patients walk a tightrope... the vast majority of

transplanted kidneys are lost to rejection and our

current treatments for these remain highly inadequate.

For many patients we still cannot adequately control

the immune systems attack on their kidney transplant,

which ultimately leads to the loss of the new organ.”

Dr Alan SalamaMBBS PhD Reader and Honorary Consultant Nephrologist at University College London.

Page 11: Making Every Kidney Count

Like akidney,

we filterout thebest ofthe best. . .

TheHeroes

THETEAM

we wantthe best!

We ask all the doctors,scientists and researchers inthe UK to tell us whatgroundbreaking workthey are doing.

Our peer review processhelps us select the bestresearch teams and projects.

Kidney Research UK’s proven governanceapproach ensures that projects are led by

the UK’s leading kidney research specialistsworking in the top institutes and with the

support of committed research teams.

Yoursupport

helpingtransform

lives

helpingtransform

lives

doctorsconsultants surgeons

scientistsprofessors researchers

Page 12: Making Every Kidney Count

When I first sawthe Kidney Research UK

scientists making a kidneywork outside the body

it was a real WOW moment!

Page 13: Making Every Kidney Count

The UK has a wealth of scientific expertisein somany different areas of research, butmaking real breakthroughs is a team effort.To capitalise on related expertise anduse novel approaches, researchers learnfrom each other as well as from theirexperiments! The results of this appeal

will allow thedevelopment andfunding of strongteams working onprojects at a scalethat we havepreviouslyonly dreamed of.It WILL make adifference.

“ Making important scientificdiscoveries that can change the livesof patients means 'thinking outsidethe box' and building collaborationswith other scientists.”Fiona KaretProfessor of Nephrology & Honorary Consultant in Renal Medicine; Cambridge Institute for Medical Research

Genetics

Page 14: Making Every Kidney Count

“The voice said ‘can you pleasemake your way to the hospital,we have a kidney for you’.I have got my life back, anormal life like everyone else.”Jelina Berlow-Rahman

Miss Lorna MarsonAs a surgeon, one of my proudest moments was completing the Glasgow 10K racewith Ronnie McIntosh, a gentleman I performed a transplant for 3 years previously.Ronnie lost both his legs during a long illness on dialysis and he overcametremendous pain to complete the race. ‘Every step I take, I take for my donor family’was his mantra.The gratitude felt by patientssuch as Ronnie for the amazinggift of organ donationis humbling.The UK transplant community isa relatively small one, withenormous commitment fromclinicians and scientist to worktirelessly to expand the pool oforgan donors, to optimise eachand every kidney that istransplanted, and thus to improve long term outcome.We have made tremendous strides, over the last 10 years but we still havea long way to go.

MoreKidneys

Page 15: Making Every Kidney Count

ProfessorMike Nicholson

It never gets any easier explainingto patients and their loved onesthat we can’t proceed with their

transplant, as we didn’t think thedonated kidney was viable.Our new technique has the

potential to reduce the transplantwaiting list by allowing us to

safely test and then use kidneyswhich we might previously have discarded.

“I was given the opportunityto receive a donated kidney thatwas damaged. The doctor explainedthat his team had discovered a newprocess to make the kidney viable.I trusted his judgement and I hadnothing to lose and everything togain. Now I feel wonderful. I havemore energy than I’ve had in years.”Deborah Bakewell

GreaterViability

Page 16: Making Every Kidney Count

Professor Giovanna LombardiIt’s a vicious circle - we have to suppress the body’simmune system to try and prevent the donated kidneybeing rejected, but this leaves the patient vulnerable toserious infection. Ourpioneering cell-basedtechniques offer apotential alternative tosuppressing the body’simmune system, whichwill lead to a reductionin further complications– making everykidney count.

“I felt better immediately afterwaking up from the surgery.It was like my personality andmind was waking up froma long hibernation.After 6 months I felt almostfully healed. I have my life back.”Steve Fry

LessRejection

Page 17: Making Every Kidney Count

Laurence (Appeal Ambassador)“Everything seemed ok until I

heard the words ‘pack your bagsfor hospital, you’re going into

acute renal failure.’My life was saved by my very goodfriend Andrew who was willing to

take time out of university todonate his kidney.

We must do whatever it takes to make EVERY kidney count.”

Sandra (CEO)Since I became Chief Executive of Kidney Research

UK, I have met many people with heart-wrenching

stories. People that often face enormous daily

struggles because of their kidney disease .

I have also seen first hand the challenges that are

faced in the area of transplantation and I believe

that the time is now right for us to accelerate the

pace of innovation. This appeal offers us a real

opportunity to transform lives. It has generated an

exceptional response from the UK’s leading scientists and kidney doctors.

I hope that we can count you in.

Page 18: Making Every Kidney Count
Page 19: Making Every Kidney Count

www.kidneyresearchuk.org

Kidney Research UK, Nene Hall, LynchWood Park, Peterborough, PE2 6FZRegistered Charity No. 252892 Registered Scottish Charity No. SC039245

TThhaannkk yyoouu ffoorr