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Issue 01/Autumn 2015 01

Cover: Pictured with sister Zainab, nine-year-old Habiba underwent four liver transplants when she was just six. Find out more by visiting bigyellowfriday.org/habiba.

Over the last six months, CLDF has consulted and been asked to give views on a wide variety of paediatric liver care issues. We are also working with partners in the three specialist liver units to ensure that our young people and families’ needs are represented at the highest levels. Our developing work with Public Health England will see a number of initiatives over the autumn which will raise awareness and support our Yellow Alert campaign. More on this on page 4. In between editions of Liver Life we will send news updates by email. It’s really important that we communicate with you in whatever way suits you best, so if you would like to stop receiving either email or postal mailings from us at any time, please do let us know. We all hope you enjoy reading Liver Life as much as we have enjoyed putting it together and I look forward to hearing your comments.

Hello and welcome to CLDF’s new biannual magazine.

With warm wishes and sincere thanks for your continued support.

As you may know, 2014 was a year of consultation – taking time to listen to you to help inform a new five-year strategy to take CLDF forward into the future. An important piece of feedback was your wish for a CLDF publication with more detail on the depth and breadth of services to help you on your journey with childhood liver disease. So here it is – the pages are full of interesting items including news of a change in a senior honorary role at CLDF; the launch of our Ambassadors scheme for young people; exciting fundraising opportunities; as well as a smart new look for Big Yellow Friday.

Alison Taylor Chief Executive ceo@childliverdisease.org

CLDF’s Christmas Cards Are Back! You may think Christmas is miles away but it’s a lot closer than you think. CLDF Christmas cards are an excellent way of raising funds and also promoting the charity whilst keeping in touch with people during the holiday season. This year, we have a brilliant selection for you to choose from. There are 12 different designs in the catalogue ranging from vintage candles to beautiful festive patterns and footprints in the snow. For a closer look at the options, visit childliverdisease.org/shop and support CLDF this festive season! 02

contents Choices and decisions p6

Celebrating loved ones p16

Yellow Alert app launch

Nurse goes ‘Closer to the Edge’

Scars make me strong

Big business for CLDF

Research project updates

New Honorary Medical Director

Get social

In the news

Big Yellow Friday

New role enhances nursing perspective

Meeting and sharing with others

Didn’t they do well?

Fantastic fundraisers!

Get blogging

Anokh makes his mark

Christmas greetings with a difference

Trusts and foundations

On the radio p17

Your Funds p20

Launching our Yellow Alert app Our Yellow Alert campaign has seen a huge increase in impact recently, with significant media coverage and promotion to healthcare professionals. This heightened awareness led to Hertfordshire Community NHS Trust making Yellow Alert training mandatory for its health visitors, with chief executive Alison Taylor and CNS Louise Hair from King’s College Hospital delivering a Yellow Alert day to over 200 individuals this summer. We need to educate more professionals to spot the signs of paediatric liver disease and have worked with a developer to create a Yellow Alert app. This gives clear guidance on the protocol to follow to ensure fast referral for babies with prolonged jaundice. Created by app developer Exploding Phone with support from The Worshipful Company of Actuaries, CLDF’s Yellow Alert app was launched with Public Health England earlier this month and will be available in both the Apple app store and Google Play store. To download the app, visit childliverdisease.org/yellowalertapp.

CLDF on the campaign trail… Alison Taylor says: e know only too well that there is a serious W shortage of organs and that the gap between the number of organs donated and the number of people waiting for a transplant is increasing. By talking about this issue with their families, individuals can help ensure their wishes are carried out and fewer people will die because an organ is unavailable.

At the British Transplant Games at the end of July CLDF joined forces with many other national charities to raise awareness of the need to increase the family consent rate for organ donation. This “Save a Life a Day” initiative perfectly complements CLDF’s own “Say Yes” campaign, which raises awareness of the need for more families to honour the wishes of a loved one at a very difficult time. 04

CLDF has also been involved recently with the National Institute for Health and Care Excellence (NICE) in a number of consultations and will be taking part in the living liver donation consultation via the Interventional Procedures Advisory Committee, again making sure that your voices are heard in this important area of liver transplantation. During the autumn, CLDF will be working with partners and colleagues to exert further encouragement for the introduction of Hepatitis B to be included in the UK infant vaccination programme, as advised by the Government’s Joint Committee on Vaccination and Immunisation. Please check the website regularly for updates and to sign up to CLDF’s “Say Yes” campaign, visit childliverdisease.org/yes.

Nurse goes ‘Closer to the Edge’ For Annie Thomas, a staff nurse on the Rays of Sunshine Ward at King’s College Hospital in London, attending one of CLDF’s residential events was an inspiration – in more ways than one. “The name of the event says it all,” laughs Annie. “Each one of us went ‘Closer to the Edge’ and I was definitely out of my comfort zone at times! It was truly inspirational.” Closer to the Edge is CLDF’s three-day residential event for 12 to 15 year olds which includes a 24-hour bushcraft session where everyone makes a shelter to sleep in, then prepares and cooks dinner outdoors - things which most of us would find challenging. “These teenagers were amazing,” says Annie. “None of them knew each other, but as soon as activities got under way, relationships started to form. It was great to see.” Although Annie was aware of CLDF before going on Closer to the Edge, she admits she didn’t appreciate fully the scope and impact of its events. “This was another inspirational aspect of the event. It opened my eyes to how CLDF brings people together and how powerful that is. You could see it with these teenagers – sharing their stories, supporting one another and really growing in confidence. Some of the girls showed each other their scars, too, and I think that was really empowering.”

Y oung people with a childhood liver condition can and do flourish. I’m so grateful to CLDF for giving me an opportunity to see a different side to the liver world. Annie says that for some teenagers who became ill when they were very young, coming to terms with their liver condition or transplant can be difficult. “They may

Annie Thomas have no memory of being ill at all, so having to take daily medication or do things differently to friends can be really tough, but these events enable them to talk through any worries with peers who really understand.” Annie was also inspired by the young people not letting their medical history define them. “They were just living life to the full, taking on each challenge. And when the rain came and we had to pack up our camp, not one of them complained. We were all soaking wet, but got on with the job and had a laugh. It was brilliant.” For any healthcare professionals unfamiliar with CLDF projects, Annie recommends finding out more. She explains: “I’ve seen a much deeper side to CLDF’s work now and can make a stronger connection with what I do. I went back really excited, thinking about how my patients would benefit from these events and telling parents about them, too. Young people with a childhood liver condition can and do flourish. I’m so grateful to CLDF for giving me an opportunity to see a different side to the liver world.” If you’re a nurse and interested in supporting CLDF residential events, please contact Laura Varma at CLDF on 0121 212 6009 or email stm@childliverdisease.org.

Choices and decisions So when does adolescence start? There are early bloomers, late arrivers, speedy developers and slow-but-steady growers. In other words, there’s a wide range of what’s considered normal. Most of us think of puberty as the development of adult sexual characteristics: boobs, periods, pubic hair, voice breaking and facial hair. As well as physical changes (between the ages of 8 and 14 or so) you can also go through changes that aren’t readily seen from the outside - the changes of adolescence. “Trying on” different looks and identities and becoming very aware of how you differ from your peers can result in episodes of distress and conflict. When faced with these changes as well as a liver disease, you have added pressures when you need them least. Rich, our young people’s officer, is here for you whether it’s a chat about your favourite box set or issues that are getting you down. We have leaflets on alcohol, contraception, tattoos and piercings and are just about to launch a new social media platform called Hive, so watch this space. To find out more visit cldf-focus.org or give Rich a call on 0121 212 6024.

Scars make me strong Some young people can be very body conscious and scars may affect the image they have of themselves. Over the past few months CLDF has been encouraging young people to share their scar stories to support those who might feel less confident. Fiona, 20, who has had a liver transplant, says: “My scar means so much to me. Although it’s a constant reminder of a distressing time in my life, it represents so much more. It represents what my family went through and all the nights spent beside my hospital bed. It represents the care given by the medical professionals who saved my life. It shows me every day that I survived and reminds me of my strength.” Fiona’s message to others is: don’t let your scar hold you back. It’s so important to remember what it represents. For more inspirational stories visit cldf-focus.org/scarsmakemestrong.

Big business for CLDF Whether you’d like to fundraise with colleagues, customers or suppliers, or your employer is seeking a new charity partner, there are lots of benefits, to supporting CLDF’s work. From sponsoring events or activities to holding ad-hoc fundraising days, we have plenty of ideas – here are just a few to get you thinking… Charity of the Year

Choosing Children’s Liver Disease Foundation as your charity partner can provide many business benefits, inspiring greater team work, motivation and loyalty.

Gifts in Kind

Whether prizes for auctions or raffles or donating your products or services, every donation helps raise income or reduce our costs.

I t was wonderful to embark on this corporate partnership with CLDF. Although our reusable, ecofriendly bags have raised funds for charities before, this is the first partner charity we have worked with, and enabled greater support from CLDF directly.

CLDF’s events

Run, walk, cycle or even skydive for CLDF, entertain clients at our Chefs’ Gala Dinner or turn your office yellow on Big Yellow Friday.

Employee Fundraising

There are plenty of ways for staff to fundraise, both in and out of the office including bake sales, dress down days, quiz nights and team challenge events.

Sponsorship

We have lots of opportunities for your company to support events or initiatives which will give your company brand exposure such as our prestigious Chefs’ Gala Dinner.

Matched Giving

Lots of companies offer to match money raised by staff. If you’re raising funds for CLDF it’s worth finding out if your company has a Matched Giving scheme. It could double your donation.

To have such support made the fundraising a lot easier to manage and share. Our staff have really enjoyed the planning of our bake sales, bikeathon event, and the Charity Ball in particular. It brings the team together on a fun, creative project; allowing them to think of and participate in some fantastic events and fundraising ideas. We certainly recommend CLDF as a great charity partner. Barrie Turner, Managing Director at Jutexpo Ltd

e have worked with CLDF for several years now, W supporting them in raising money for Big Yellow Friday. Each year we have completed different activities such as wear yellow, baking yellow cakes and collecting funds in the city centre. The feedback from the participants and the staff is excellent. They have thoroughly enjoyed all the activities, getting involved with the charity and, very importantly, knowing where the money raised is going to and who it is helping. onna Wilkes, The Royal Bank of D Scotland Group Visit childliverdisease.org/corporatepartnerships for more information. 07

Research into alpha-1 antitrypsin deficiency Charis explains: “Alpha-1 antitrypsin deficiency results in the production of abnormal proteins, which form polymers in liver cells. These polymers cause liver damage, ultimately leading to cirrhosis, with the only treatment being liver transplantation.” A new technology called cellular reprogramming has allowed Professor Vallier’s group at the Cambridge Stem Cell Institute to convert small pieces of an alpha-1 antitrypsin patient’s skin into stem cells which then develop into liver cells. These cells recreate many features of human liver disease, allowing detailed molecular study to take place for the first time.

CLDF funds a range of research projects which enhance understanding of childhood liver disease. Through the William Hollway PhD Fellowship, CLDF has supported Charis-Patricia Segeritz to study the relationship between alpha-1 antitrypsin polymers and liver disease.

Charis continues: “Together with researchers from Professor David Lomas’ lab, I found that the polymers are trapped inside diseased liver cells. I also identified some of the genes and proteins that liver cells activate in response to alpha-1 antitrypsin. These biomarkers could be used to diagnose alpha-1 antitrypsin and represent new areas for drug development. Blocking the activity of these factors with drugs could be a promising avenue to prevent the development of the alpha-1 antitrypsin deficiency in the future.”

Social research project nears completion the University of Worcester. Shahreen has interviewed young people, their parents, plus young adults diagnosed in childhood, covering diagnosis and treatment, how they’ve coped with their condition, taking medication, impact on their social life and relationships with health professionals. Shahreen says: “An important finding focused on the need for appropriate information, which can vary from person to person during different stages of their journey with childhood liver disease. For example, the needs of parents of a baby newly diagnosed with liver disease will vary from a young person’s need for information about the side effects of their medication.

As well as funding clinical and laboratory-based projects, CLDF has recently moved into social research. One of these projects is finding out more about young people living with a liver disease and is being conducted by Shahreen Bashir of Aston University, led by Dr Pam Lowe, also of Aston and Professor Elizabeth Peel from 08

“ Receiving support from CLDF has made a huge difference to me; many excellent pieces of health research struggle to materialise into practical changes which can help those affected, but I know the results are directly going to CLDF who can make a real difference.” Both these projects prove just how vital CLDF research projects are. Visit childliverdisease.org/research for more information.

New Honorary Medical Director government policy. I’m looking forward to providing medical advice to the CLDF team and enhancing its already strong links with medical professionals and networks.” Professor Thompson takes over from Dr Patrick McKiernan, Consultant Paediatric Hepatologist at Birmingham Children’s Hospital, who said: “It has been a real honour to have performed this role for eight years and there have been many, many highlights. I’ve particularly enjoyed working with both Chief Executives and the trustees; their enthusiasm and professionalism is outstanding and Tom Ross’s chairmanship has been very supportive. I must also pay tribute to Professor John Iredale, who steers the Scientific Committee so effortlessly and effectively. We have seen some wonderful research projects come to fruition over the years and I’m sure there will be many more.”

Professor Richard Thompson, an Honorary Consultant at King’s College Hospital in London and Professor of Molecular Hepatology at King’s College London, has been appointed CLDF’s new Honorary Medical Director. A specialist in the field of cholestatic liver disease, Richard has identified several genes that cause liver disease, published many scientific papers and spoken at numerous international conferences. He has worked with CLDF since 1998 and for several years has been a member of its Scientific Committee. Richard said: “CLDF’s provision of information, support and research funding is absolutely vital, as is its role representing patients and their families to influence

“ CLDF is very much part of the paediatric liver disease family and my career within this field can in part be traced to a CLDF event I attended in 1990 and which enthused me so completely. I know Richard will do a fantastic job and hope that he enjoys the role as much as I have.” Alison Taylor added on behalf the charity and the board of trustees: “We are indebted to the professionals who support us, none more so than Dr Patrick McKiernan, who has been a stalwart champion of the charity, giving his time and insightful advice so generously. When we’ve needed professional expertise, he’s always answered our call and we feel incredibly fortunate to have had that support. As we move forward we’re excited to be working with Professor Richard Thompson, who has a huge amount of expertise and is a very well respected member of the paediatric liver community. We’re grateful to him for joining us and taking on this new challenge.”

Reaching out to professionals Over the last year CLDF has been out and about attending a range of conferences and events aimed at healthcare professionals. These are an important part of our awareness-raising and networking programme and range from the British Liver Nurses Forum to annual conferences of the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN), its European counterpart ESPGHAN, plus the Community Practitioners and Health Visitors Association (CHPVA). Chief executive Alison Taylor says: “These events give us fantastic opportunities to meet large numbers of

healthcare professionals in one location, talking to them about our work and how it might help them with patients in clinic or out in the community. It’s also a perfect opportunity to ask them what they need and how we might be able to help them in the future. Many of these events provide us with a chance to catch up with eminent specialists from across the paediatric liver world to discuss new developments which may one day help our young people and their families.” CLDF recently attended BSPGHAN’s Associates and Trainees conference and will be attending the CHPVA conference this November in Manchester.

Get social There are many fantastic things about social media, from speaking to an old friend you haven’t seen in years to seeing a photo that reminds you of the good old days.

Our plan is to bring everyone who wants to fight childhood liver disease together as one. By using your own personal social media networks you can share our stories, shout about our campaigns and make more people aware of childhood liver disease than ever before!

So if you haven’t already, join us on facebook.com/cldfonline and twitter.com/tweetcldf, where you will receive the latest and greatest CLDF updates and connect with our amazing liver community.

(For those that are following us and don’t seem to receive our updates in your news feeds, the more you engage with our posts by liking, commenting and sharing, the more they will start popping up.)

@tweetcldf

/cldfonline

Register for the latest CLDF updates Since CLDF became a charity 35 years ago, things have changed considerably, not only within the charity but in the world of childhood liver disease as we learn of latest developments and share them with you. To keep up with the most recent news, you can subscribe to our updates via childliverdisease.org/register.aspx. By joining our CLDF database, you’ll never miss hearing

Share your story Hearing how people deal with childhood liver disease can be very valuable, offering insight and hope as well as practical advice. This year we’ve been asking families to share their stories on a liver condition or situation each month. There’s been a great response and some very powerful stories, which we know families find really valuable. This comment by Yasmin after reading Wendy’s story about being mum to a little girl with biliary atresia sums it up perfectly: “ This story brought tears to my eyes. We are living the day to day of liver disease and it is inspiring stories like these that help you soldier on. Thanks!!” To share your liver journey and read other people’s visit childliverdisease.org/share-your-story. If you would like to share your experiences, pose questions or give advice when you can, why not visit our online community hosted by HealthUnlocked. Visit healthunlocked.com/cldf to register and join in. 10

about the fantastic events we run and how we can all fight childhood liver disease together. Be safe in the knowledge that any details you provide will meet all data protection criteria and at no point will be shared with a third party. Your details will only be used by us to keep you informed and you can change your preferences at any time by calling us on 0121 212 3839 or emailing info@childliverdisease.org.

Join #TeamCLDF at next year’s London to Paris Cycle Ride 31st August – 5th September 2016 If you’re looking for a new challenge or want to (literally) go that extra mile for CLDF then this is definitely one not to miss! Contact a member of the fundraising team on fundraising@childliverdisease.org or call 0121 212 6022 to find out more info and sign up today

In the news Over the past few months CLDF has maintained a strong presence in the media, largely thanks to our families being willing to tell their amazing stories in order to raise awareness of childhood liver disease. Earlier this year Real People magazine featured the touching story of Jack who not only married his partner, Debbie while the family were in hospital while their baby son waited for a new liver, but lost a stone so that he could be a living donor for little Jack Junior. And Emma, mum to Freddie who has Alagille syndrome, spoke movingly to the Sunday Express magazine about the reality of caring for a toddler with this rare condition. The resulting two page article was a wonderful opportunity for people who may never have heard of children’s liver disease before to find out about its implications and the work of CLDF.

Regional newspapers are also very valuable to CLDF. Kerrie was interviewed by her local newspaper about the importance of spotting the early signs of liver disease in babies after they noticed her story on our website. “ It was only a quick telephone interview but if it prompted just one family to ask their GP about prolonged jaundice then it was certainly worthwhile,” says Kerrie. Your fundraising activity can also make great press stories for us. When Katie became our youngest ever skydiver by doing a parachute jump on her 16th birthday, the Gloucestershire Echo interviewed her mum Paula and sent a photographer along to snap them both! “ We were happy to be in the paper – it made people more aware of children’s liver disease,” said Paula. “ We sent copies to our family, friends and even the hospital!” We can only generate this kind of awareness with your help. If you think that your personal story might be worth sharing or if you have a fundraising event coming up which you would like us to help publicise, please contact our press officer, Mairead on press@childliverdisease.org.

A great Big Yellow thank you We would like to say a huge thank you to each and every one of you who supported Big Yellow Friday 2015. We were absolutely thrilled that you raised the fantastic total of £104,966 and made this year our biggest to date, with over 3,500 people up and down the country taking part in hundreds of events and activities. Some of the wonderful (and imaginative!) events which took place included a fancy dress toddle waddle, dressing up as a giant block of cheese, custard pie throwing, guess the blond quiz as well as running over Tyne Bridge dressed as ducks. It was great to see so many of our wonderful supporters get involved and go the extra mile. You were all amazing! The money raised is truly incredible and accounts for over 10% of CLDF’s annual income. Find out about the life changing projects you helped fund at bigyellowfriday.org. The fundraising team are excited to launch Big Yellow Friday 2016. Now entering its 9th year and, after much discussion and consultation with our Big Yellow Friday fundraisers, our national fundraising day has had a mini makeover. We really hope you love the new design as much as we do. Thank you again and here’s to 2016!

A BIG THANK YOU TO

for kindly sponsoring Big Yellow Friday 2016!

BIG YELLOW FRIDAY SPREAD THE is Children’s Liver Disease Foundation’s national fundraising day and a chance for you to show your WORD AND support and join in our yellow themed fun. DOWNLOAD WHAT WILL YOU DO? THE POSTER From bake sales to bike-athons, custard pie throwing to comedy nights, every fundraising event has the power to transform lives. There are lots of ways for everyone to join in at home, school, or work, and we’ve got everything you need to get started… Today, many children are alive thanks to the tireless work and campaigning of Children’s Liver Disease Foundation. We rely on fundraising activities and donations to deliver our vital work, so join us on Friday 4th March and help transform the lives of children and young people affected by childhood liver disease, today and in the future.

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Newly created role enhances nursing perspective Lindsay Hogg, principal specialist nurse at Birmingham Children’s Hospital’s liver unit, has taken on a newly created consultative role at CLDF. As well as providing specific nursing advice where needed, Lindsay has started a programme to review CLDF’s extensive suite of literature against the latest developments, advice and research. This also involves talking to other medical professionals to make sure that the literature is as up to date as possible. She has also worked on new literature for young people growing up with a liver condition or transplant and earlier this year provided nursing support on a Talk, Tell, Transform reunion event. Lindsay says: “I’m enjoying helping CLDF and I’m also finding it a very valuable experience for my work at Birmingham Children’s Hospital. Talking with these amazing young people and their families outside of the ward environment is broadening my view and that’s incredibly beneficial.” Laura Varma, support team manager, adds: “Lindsay is a great asset to have on our team, providing a nursing perspective that will not only benefit our work with children, young people and their families, but also help us to understand more clearly what CLDF can do to help nursing professionals in their work.”

How £5 a month can transform lives… By making a regular gift to Children’s Liver Disease Foundation of just £5 a month or more, you will be making a big difference to children and young people with a liver disease and their families every day.

I will help to support thousands

of children and families. Here’s Yes! my life changing gift...

fighting childhood liver disease

Give a little – help a lot! Every penny of your gift will change lives:

One parent says: “It is wonderful to know that our monthly donations help to provide support to other families living with childhood liver disease. We know what a lifeline this is. For us, this is an easy and convenient way to give back. We want our daughter to be able to access special support for teenagers in years to come.” 

Why a regular gift? CLDF was started by families for families and we rely on voluntary contributions to deliver our life changing work. By setting up a regular gift, you will join hundreds of amazing people who are helping to shape the future and transform the lives of thousands affected.

£25 funds 6 Yellow Alert packs informing parents and professionals how to spot the early signs of childhood liver disease – early diagnosis can save lives.

Make a regular gift today and help change thousands of lives...

Children’s Liver Disease Foundation Direct Debit Regular Gift Form Return to — CLDF, 36 Great Charles Street, Birmingham, B3 3JY or Set up your gift now online at childliverdisease.org/donate Bank/ Building Society Branch name:

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691213

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Thank you so much for your life changing support – together we can make a big difference.

Signature(s):

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Donation Details

£5 funds a special information pack with key leaflets to support newly diagnosed families Bank/Building Society account number

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01 /_ _/ _ _ _ _ or 15 /_ _/ _ _ _ _

Gift Aid Declaration: I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for each tax year (6 April to 5 April) that is at least equal to the amount of tax that all the charities or Community Amateur Sports Clubs (CASCs) that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 25p (or the current basic rate) of tax on every £1 that I give and that Gift Aid cannot be claimed where my family or I receive a personal benefit. I confirm that my declaration covers this and any future donations I may make to CLDF. I understand that I may cancel my declaration at anytime by informing CLDF and that I must inform CLDF if I change my name, address or if I am no longer eligible to make donations under Gift Aid.

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CLDF Regular Giving 2015.indd 1-2

It’s easy to set up your gift at childliverdisease.org/donate or call us on 0121 212 6022.

24351 24 July 2015 9:39 AM Proof 6

fighting childhood liver disease 24/07/2015 14:46:51

Meeting and sharing with others Paul and son Charlie proudly show off their shelter at Wild Camp

During our consultation families told us they would like CLDF events to last longer so we have piloted two weekend events with the aim of offering one in each of the four nations by 2017.

Ellie says:

Laura Varma, support team manager at CLDF, says: “Along with other family days dotted around the UK and our residential trips, we are creating as many opportunities as we can for people to get together and share their journey. They really are a great way for people to support each other – whatever their age.”

recently diagnosed with autoimmune liver disease, picks up the story:

But don’t just take our word for it. Here’s what Ellie, aged 12, felt about her trip on CLDF’s Closer to the Edge: “ When I arrived at the CLDF office my nerves were at their worst as I’m really bad at meeting new people. However, I didn’t need to worry as the trip was amazing! Everyone made so many friends and had so much fun! I especially loved the 24hr bushcraft survival because I love being outdoors and sleeping in the woods. It was much less scary then I thought it would have been! “When I got home, I felt great. I will never forget this amazing experience. I loved how close we all were by the end. We had only known each other for a matter of days yet in the dorms, we were sharing our stories! To anyone thinking about going I would say do it, you will not regret it. You make so many lifelong friends it is truly worth it!” In August we took ten children aged between 7 and 11 years old and their parents into the woods for a 24-hour Wild Camp in Oxfordshire. Paul, whose son Charlie was

o anyone thinking about going I would say do it, you T will not regret it. You make so many lifelong friends it is truly worth it!

“Both Charlie and I really enjoyed the experience. Building a fire, collecting the materials to make a shelter and preparing a small flock of pigeons (deceased, thankfully) for supper were just some of the challenges we had to tackle. Having served in the military I’d been on exercises like this, but I was curious to see how the children would cope - especially with the pigeon prep - and I was astonished at how receptive and engaged they were. “This was the first time outside hospital that we have been able to meet parents in the same situation as us and it was especially good for Charlie to meet children who are going through the same issues as him. For both of us it was a truly great weekend – the kind that makes a lifetime memory.” For more information on all CLDF events visit childliverdisease.org/familyevents or call 0121 212 6024 to speak to a member of the support team. PS - and if you missed the release of this year’s Talk, Tell, Transform digital stories, do take a look at these inspirational young people. Visit cldf-focus.org/Talk-Tell-Transform-2015.

Celebrating loved ones no longer with us

CLDF holds its children who have sadly died close to its heart and we have recently launched a tribute fund which helps families and friends remember their loved ones. Setting up a Sunshine Tribute Fund is a wonderful way of remembering and celebrating someone special. You can create a memorial page so that you, your friends and family can easily make donations, light candles in remembrance and leave personal messages. Sunshine Tribute Funds offer the opportunity to acknowledge their life and the impact that they have made in a very personal way while supporting the work of Children’s Liver Disease Foundation. For more information visit childliverdisease.org/sunshine. CLDF held its biennial Remembrance Service and Family Picnic at the National Memorial Arboretum in Staffordshire in August. The service was conducted by a humanist celebrant who did a wonderful job and at the end of the service doves were released. This event gave us not only the opportunity to remember and celebrate children who had died, but also to remember organ donors who had given the gift of life to some of our children. During the service families remembered their special person by writing on a butterfly and families who couldn’t attend the day also sent butterflies in so their loved ones could be remembered too. These are now on display in our office. Lauren, whose sister Mollie passed away in April of this year at just 20, attended the service. She says: “The service was perfect, so beautiful and peaceful. We were

honoured to have been a part of it and are so grateful to CLDF for making it such a special and memorable day. This is why we continue to fundraise for CLDF, so that they can continue to provide support to families like ours in all the wonderful ways that they do.” To see the overview of service visit childliverdisease.org/remembrance2015. For more information visit childliverdisease.org/bereavement or contact our families team on 0121 212 6023 or email families@childliverdisease.org.

In loving memory Natalie Jane Close

25th October 1973 - 2nd September 1974

David Acott

4th June 1997 - 11th March 2015

Theo Frazer Hickman 12th April 2015 - 11th July 2015

Mollie J Barton

18th October 1994 - 29th April 2015

Kim’s experience of ‘going live’ “ I wanted to help raise awareness of liver disease and try to get people to understand that it’s not all related to drugs and alcohol,” she said.

CLDF featured on radio stations around the country in June as we announced the results of our research into misconceptions about young people with liver disease. The research revealed that the majority of people surveyed thought that it wasn’t possible for a child to be born with liver disease or that it could affect a previously healthy child. Chief Executive, Alison, was joined by 19 year old Kim, one of our Young Ambassadors, in a London radio studio from where they were interviewed by stations around the country. It was a new experience for Kim who admits this is a subject she feels very strongly about.

“ Going into a radio studio was exciting and the people there were really nice and made it fun! “ The first interview was definitely the scariest because we didn’t have much time to prepare. To begin with I also found it a bit strange to be interviewed by people I couldn’t see! “ After a few interviews though I got into the swing of things and became more confident. The live interviews were a bit more nerve-wracking than the pre-records because I didn’t want to mess it up but once I had done the first one I felt relieved and prepared for the next! “ The whole thing was a great experience and something I would definitely do again.”

Didn’t they do well? Joey Grigg King has moved to adult services and attended his first clinic without his parents. Michael Anthony passed all his National 5 exams. He is continuing on to 6th year and has been accepted at college two afternoons a week to study for an HNC in electrical engineering. Congratulations to all our children and young people who competed in the transplant games. Katie Murphy did a skydive on her 16th birthday and raised £295 - our youngest skydiver. Bethan Lloyd Williams has done a zip wire challenge with her sister and raised over £400. Finlay Mowlem did a cycle ride with his dad and his friend and raised over £1,000. Flo Craig got 3 A*s and 1 A at A level. Joanna Howe got into Liverpool Uni.

Jordan Clarke got 3 As at A level and is off to medical school. Katie Mullholland got ABC in her exams. Katie Baldry graduated and got a job as a reception teacher starting in September. Alex Torrance got his AS exam results (an A and 2 Bs) – after a tricky year of missing a lot of school. Elle Wilkinson got mostly all Distinctions and a couple of Merits for her Extended Diploma in Art Design. She is off to York College. Emma Redgate has represented Team GB at the World Transplant Games. Jodie McBride did a sponsored hair cut for us earlier this year and raised just under £500. Forbes Young cycled 24 miles over 15 hours for CLDF along with his mum Donna and dad Ross! Together they completely smashed their target of £250, raising over £900. If you’d like to put someone forward for the next edition of Liver Life, give Rich a call on 0121 212 6024 or email ypo@childliverdisease.org. 17

Fantastic fundraisers! Here are just a few of our amazing supporters who have been fundraising for us over the past few months. If you’re inspired, check out our website childliverdisease.org/fundraising for ideas (big and small) of how you can help us to make a difference. Emma McDonald & Freddie’s Fundraisers The McDonalds went above and beyond for CLDF by organising ‘Freddie’s Ball’ in honour of two-year-old son Freddie, who has Alagille syndrome. The evening raised an incredible £26,130, the most ever raised from a family event. Congratulations and sincere thanks to everyone involved.

Clive Barzillia Some of you might remember Clive Barzillia and his specially-made, yellow Stormtrooper outfit from Big Yellow Friday. Clive decided to celebrate his son Isaac’s birthday a bit differently this year, and raffled off his Stormtrooper helmet to raise awareness and donations.

Mary McManus 75-year-old Mary McManus not only ran the Glasgow 10k this year but she also raised over £600 to support CLDF in honour of a friend’s grandson. What an amazing lady!

Andy Sledge Andy Sledge took part in the Bristol 10k earlier this year and raised a wonderful £465 in memory of his sister Helen.

Carly Beckett Carly’s younger sister Lily who has a childhood liver disease was her motivation for signing up to the Brighton Marathon. Not only did she complete the run in just over 5 hours, she also raised over £2,200. Thank you Carly for sharing this achievement with us!

Muppett Grandad Muppett once again took on his annual sponsored walk in honour of his grandson Amos. This year saw Muppett take on canals and castles to complete his ‘Walk for Amos’ and raise over £800 towards our vital work.

Paul Rose It doesn’t come much tougher than the Samworth Brother’s Charity Challenge, but Paul and his friends were happy to take on the challenge to support CLDF. After running, cycling and canoeing their way to the finish line they have raised an incredible £3,500!

Emily Harris Emily Harris, a budding musician, was inspired to support CLDF after her cousin had a liver transplant. Emily organised a special concert where she played the harp and raised a wonderful £800 for CLDF.

Andrew Hurle Andrew Hurle and 11 of his friends took part in the Darlington 10k in August and raised over £1,000. Andrew’s daughter Annabella, who is two years post Kasai (and doing great!), was there to cheer the team on with her twin sister Sophia and mummy Beth.

Richard Frape and Richard Palya Richard Frape and Richard Palya were two members of CLDF’s very first RideLondon team, joining 11 others in riding 100 miles from London to Surrey. With a £1,000 donation from their company Therapak they have raised over £3,000. Congratulations to them and all of Team CLDF on this amazing achievement.

Barry Nicholson In memory of his daughter Katherine, Barry Nicholson took on an epic challenge – cycling an amazing 432km from CLDF’s office in Birmingham to the Transplant Games in Newcastle in the space of just 3 days!

Lorna Peggie Lorna Peggie raised £200 for CLDF from her sale of ‘Grans Hats’ at her local college and her granddaughter Ada’s nursery. Ada is four years old and has biliary atresia. Here she is rather reluctantly modelling one of Lorna’s lovely hats!

“Your Funds” - a special way to make a huge difference In return for your commitment to setting up “Your Fund” we will provide you with a range of benefits including a dedicated page on CLDF’s website as well as lots of support to help you achieve your fundraising target. We will also update you regularly on the impact your fundraising is having on our work.

Finley’s fundraising in full swing

“Your Funds” give you complete flexibility to fundraise for CLDF your way. Not only can you name your fund after your family, child or local community, but you can also choose which area of our work you support.

We set up Finley’s Fund when our son Finley was “ diagnosed,” says Rob. “As well as raising thousands to help CLDF it has made our lives a lot healthier and happier and we’ve achieved things we never thought we would. When your child is diagnosed with a rare condition you can feel very alone, but through fundraising we have had such amazing support from our local community. “ Setting up Finley’s Fundraisers has really helped us communicate the work of CLDF as well as raise vital funds to support other children and families affected.” If you or your family are interested in setting up “Your Fund”, please contact the fundraising team on 0121 212 6022 or email fundraising@childliverdisease.org.

Get blogging Blogs are a wonderful way of us giving you a bit more detail on CLDF events and activities but also for you to share your experiences with us. There’s no stringent brief for a blog – you can pretty much talk about anything to do with childhood liver disease. For example, so far this year he have had grandparents John and Joyce sharing the secrets of Big Yellow Friday success, Bethan confessing her fear of heights before taking on a zip wire challenge, Steve describing the pain of cycling around the Isle of Wight, Ben explaining how he turned his computer gaming hobby into a CLDF fundraiser and Shahreen talking about why she wanted to get involved in research into childhood liver disease. We have also been privileged to hear the experience of many parents who have responded to our calls for stories on particular liver conditions, as mentioned on page 10. We know that this is something which many of you enjoy reading so thank you all for taking the time to do this. If you haven’t seen our blogs and would like to know what you have been missing go to childliverdisease.org/blog.

Over the past 12 months the blogs section has become one of the most popular on our website. 20

Meanwhile if you have a subject you would like to blog about we would love to hear from you. Contact Rich at communications@childliverdisease.org.

Anokh makes his mark at Leeds “ Such programmes are incredibly helpful in guiding both assessment and improvement, but the key to making a real difference is working closely with all the people involved at every stage. Although hospital systems may and do change from time to time, the people working within it are the true constants. Working with clinical nurse specialists Lynne Henderson, Jackie Jennings and Sue Morgan to develop and promote my role has been one of my many highlights so far.” Since joining Leeds Anokh has achieved a huge amount including helping to develop a youth forum across Leeds Teaching Hospitals Trust, working with multiple agencies to link young people to appropriate support, developing events and activities, building links with other hospitals in the region and becoming manager for the Leeds’ transplant games team.

I believe sharing best practice and supporting one another is really important to developing a great experience for young people, wherever they are in the country. Anokh Goodman with John Dunwell and Gerard Shields at the 2015 British Transplant Games

Having the chance to create a new job from scratch is something most of us would jump at. And that’s just what Anokh Goodman, young person’s key worker in the liver services department at Leeds General Infirmary has done. And in some style! “ Making a sustainable difference is my goal,” says Anokh. “And creating new ways for young people’s voices to be heard is what drives me forward.” All successful jobs are built on strong foundations and for Anokh, who joined Leeds in May 2014, this meant an initial period of researching what was needed to enhance the experience of young people moving from children’s to adult services. “I was also keen to find out and learn from what others within the supra regional liver units were doing. I believe sharing best practice and supporting one another is really important to developing a great experience for young people, wherever they are in the country.” Anokh was impressed with the ‘Ready, Steady, Go’ programme developed by Southampton Children’s Hospital, which puts a young person right at the heart of their transition and this is being utilised by Leeds.

“ Each day is different,” Anokh says. “I may visit a new young person on the ward, attend an outpatient clinic, have a one-to-one with someone moving into adult services, or signpost a family to additional services to help them at home or college. Building relationships is absolutely key to every aspect of my role, both from the young people’s point of view as well as all the different departments within the hospital service. And this is what makes this job so rewarding; bridging the gap between the two and helping young people to find their voice is essential.” Anokh has also got to know the team at CLDF, attending several events including the National Conference and Family Day plus a recent Talk, Tell, Transform reunion. “ The CLDF team has been really supportive,” he says. “It’s very much a two-way relationship. I can promote the growing range of services the charity has for young people and also feed in to help inform future services.” A common theme running through all of Anokh’s work is his focus on people. “This is where everything starts for me,” he explains. “Everyone has been incredibly receptive to what I’m doing. And as for the young people and their families – they’re amazing! Not every young person sees moving to adult services as a challenge and that’s great. For those who do, if our service helps to ease that process I’ll be a very happy man.”

Christmas greetings with a difference Today another two children will be diagnosed with a childhood liver disease. Instead of sending your friends and colleagues a Christmas card, why not write them a festive greeting here and make a donation to help transform the lives of thousands of children, young people and families affected.

Christmas Poster Appeal

CLDF has launched a fun alternative to sending Christmas cards. We will provide you with a festive poster to display in your office, classroom or community group. All you need to do is encourage your friends and colleagues to write their festive messages on the poster in return for making a donation to Children’s Liver Disease Foundation.

Thank

36 Great Charles Street Birmingham B3 3JY

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all at AS from RISTM dation ERRY CH sease Foun And M Liver Di n’s re Child

Registered charity number 1067331 (England & Wales); SC044387 (Scotland)

T: 0121 212 6022 fundraising@childliverdisease.org www.childliverdisease.org

Kindly sponsored by www.admiraldesignandprint.co.uk

It’s a really simple way of both raising funds and awareness of childhood liver disease and our work. To obtain your Christmas Poster pack contact the fundraising team for further details at fundraising@childliverdisease.org or call 0121 212 6022. Our thanks go to Admiral Design & Print for kindly sponsoring.

Kick-start your Christmas with CLDF by joining our Santa Run Team! Taking place on Sunday 6 December the fun run is set to bring Christmas cheer to Victoria Park, London. Great for all the family with a 5k and 10k route to choose from, dogs and buggies are welcome. Have fun and change lives this festive season visit childliverdisease.org/challenges to register, or call a member of the Fundraising Team on 0121 212 6022.

Ambassador scheme for young people CLDF is setting up opportunities for its young people to become ambassadors and Flo, one of our first, shares her story: “ I first became involved with CLDF a few years after my initial diagnosis and can’t express how life-changing it has been for me. “ In the first few years I couldn’t see beyond the seemingly endless hospital admissions, appointments and tests. CLDF allowed me to meet other people in similar situations, and it completely changed my outlook. I looked up to my older CLDF friends who were happy and doing well and it made me determined and driven. I worked hard and did well in my A Levels and have just started university. “ A CLDF ambassador is a young person who, like me, wishes to help others living with a liver disease. I want to try and be a positive role model for the new generation of CLDF young people, like those I met when I was younger. I believe this is a really important scheme that will help ensure that no children with liver disease have to feel alone.” There’s lots of ways to get involved in the ambassador’s programme from cheque presentations, talks in schools to volunteering at family events and Hive. Flo took part in The One Show’s Rickshaw Challenge for BBC Children in Need 2014

To register your interest contact Rich on 0121 212 6024 or email youngpeople@childliverdisease.org.

Thank you to our trusts and foundations Without the generous support of charitable trusts and foundations, Children’s Liver Disease Foundation would be unable to reach many of the children, young people and families who rely on our services. We would like to thank the 33 charitable trusts and foundations who funded our work last year, donating over £86,000 to our projects. Our funders included BBC Children in Need, who supported our Talk, Tell, Transform project, The Adint Charitable Trust who funded our work in hospital wards and clinics and the PF Charitable Trust, who supported our Closer to the Edge residential event. We are always looking to build relationships with new trust and foundation partners. If you know a trust or foundation that may support our work, please contact Olu, our Trust and Grants Fundraiser on 0121 212 6004 or send an email to trustfund@childliverdisease.org. 36 Great Charles Street, Birmingham B3 3JY 0121 212 3839 | info@childliverdisease.org childliverdisease.org | cldf-focus.org Registered Charity Number: 1067331 (England & Wales); SC044387 (Scotland) Registered Company Number: 3431169

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Have fun with CLDF!

Here are some mind teasers to get you thinking … Try not to think of the obvious things, but try thinking of the things beyond them…

Word Search Organs in the human body... can you find them all?

H G N

D M S M S

K M

Q N

H M

M G M

R M

R M S

A M

M A

G Q C

M D

W N

Q G

W E

O C G

N Q

F W X

B M

H O C W

G M N

L W Y

D M

G H

O H

W W A

V W O C

O Q

S W N

D M

H G

B W Z

N M M U

HEART LUNGS BRAIN LIVER SPLEEN EYES STOMACH APPENDIX KIDNEYS BLADDER OESOPHAGUS

The dot test Connect the dots. Seems easy, right? But wait, there are 2 rules: 1. You have to connect the dots with ONLY 4 straight lines and 2. You can NOT lift your pencil. Answer can be found at childliverdisease.org/liverlife.