Autumn 2019 Issue 25
Preventing Pressure Sores How to minimise your chances...
Hydrocephalus and Health Getting around, bladders and balance...
Fantastic Family Fundraisers Why parents are giving something back...
Spina Bifida Awareness Week 25th - 31st October 2019
Plus lots more exciting Shine news inside!
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Autumn 2019
An update from Kate… Hi everyone, and welcome to your Autumn Together magazine. Last time, we shared our plans to trial a digital-only publication, and here it is! It’s been another eventful few months here at Shine, which has seen us continue to add to our growing range of services whilst making real progress in raising awareness through our campaigns. Since the last edition, our fight for fortification – which calls for the introduction of mandatory supplementation of flour with Folic Acid – has led to an official government consultation. We excitedly await news of the outcome. In this issue, our health experts have compiled some useful tips and updates, including how to avoid some of the common issues associated with spina bifida and hydrocephalus. And as ever we seize the opportunity to share personal insights and experiences of some of our inspirational members. As Chief Executive, it’s always a privilege to hear members tell their stories, and those from Sophie, Steph and Angus over the coming pages are no exception. You’ll also hear from some of our wonderful parents who’ve stepped up to the fundraising challenge across a range of activities. We’re always delighted to hear from our members, so if you’d like to share your story or would like to see more of something in particular, please get in touch! We’d also be very interested to hear your thoughts on this digital trial. While we hope you find Together just as engaging online as you do in print, should you prefer a paper copy, you can register here. Kate Steele Chief Executive
Make sure you keep up to date If you’ve moved house, changed your phone number or updated your email address since joining Shine, please let us know. As well as Together magazine, we send out regular emails including a monthly news round-up, invitations to events in your region and news of upcoming campaigns, developments and opportunities to get involved with our work. We’d hate for you to miss out! To check your personal details are up to date – or change how we use them to contact you – please call us on 01733 555988 or email* *Always include a phone number on emails so that we can call you back.
Folic Acid Awareness Day 1st May marked our annual Folic Acid Awareness Day and the launch of our new campaign, Folic for Life, a different approach to promoting the need for Folic Acid supplementation. Shine staff took to the streets, holding events across the country to engage the public in conversation, with unanimous positive feedback from those who took the time to find out more. Meanwhile online, our social media messaging reached more than 90,000 people across Facebook and Twitter, whilst a series of short films created for the campaign received more than 5,000 views and helped to dispel common myths about how diet and contraception might eliminate the need to take a supplement.
Autumn 2019
Partners in Shine! Shine members hand-decorated neural tube sculptures and learned about cutting-edge spina bifida research when we joined forces with University College London (UCL) and Photocentric on an educational art project.
Have SAY your
The team at UCL, led by Dr. Gabriel Galea, is trying to understand why the neural tube – which develops into the brain and spinal cord – sometimes fails to close during pregnancy.
We’re looking for volunteers to be part of a virtual focus panel to help inform and develop our products and services. The team will come together across various online platforms to review information and provide feedback to make sure that members’ insights are captured in everything we do so we continue to offer the best experience possible.
Microscopic images of real neural tubes were used to produce digital models which were printed in 3D by Glen Smith-Wymant at Photocentric. Shine members were then given the chance to get creative at our recent Get Involved and Shine event with images from the project submitted to The Royal Society’s photography competition.
To get involved, email our Volunteer Coordinator Helen Allen or call 01733 555988
Hydrocephalus and learning… Following successful pilots in Manchester and Sheffield, the latest in a series of education seminars took place in July across London, Leeds and Birmingham. Around 80 parents and professionals joined us to learn more about the cause of hydrocephalus, treatment options, the impact on learning, and how to maximise the potential of children with hydrocephalus in school. Held in partnership with local Clinical Nurse Specialists and hosted by our longstanding supporters, Irwin Mitchell, the sessions were perfectly timed to help teachers and SEND teams prepare for the arrival of new pupils in September. “It’s been a joy and a privilege to travel across England and deliver these sessions,” said Jan Tippett, Shine’s national education officer. “Our main takeaway is that more time is needed - we’d like to plan full day workshops next year, with networking opportunities and the chance to hear from young adults about their experiences. My advice to parents hoping to attend a similar event in the future is to watch this space. There’s lots more to come!”
Fed up with getting lost? A new research study is focused on understanding the impact that hydrocephalus has on navigation. The project, led by Professor Alastair Smith, Dr Trudi Edginton and Professor Catherine Loveday, aims to pinpoint exactly where the difficulties lie. The team is developing a variety of online tests to try and identify the best possible solutions. If you struggle with following directions or finding your way around, find out how you can get involved
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• Emotional support for parents through difficult times • Practical support to promote your child’s development • Information on keeping your child healthy despite multiple health challenges We’re delighted to announce the launch of our Little Stars programme, which has been made possible thanks to an incredible £346,000 grant from The National Lottery Community Fund. The exciting initiative aims to ensure the best possible start for children aged 0-10 with spina bifida and hydrocephalus in England. All Shine members with a child aged 0-10 will be enrolled into the programme. Designed in response to member feedback, the project will continue to evolve with participants having the opportunity to inform and shape its development. In addition to our existing health, education and welfare specialists, we’ll welcome four new dedicated members of staff to make sure that Little Stars offers a focused and proactive early intervention package, meaning participating members receive:
• Support to ensure your child’s educational needs are understood and provided for • Opportunities to build social connections with other families • A range of age-specific communications to support you at key milestones Kate Steele, CEO of Shine says: “We’re delighted that The National Lottery Community Fund has recognised our work in this way. Now, thanks to National Lottery players we will be able to enhance our offer to parents and children and broaden the range of opportunities available to children across England with spina bifida and hydrocephalus. This is important because it helps both the children and the parents to build relationships with others facing similar challenges and to create their own supportive circles of friends and peers.” As part of the project Shine will aim to attend as many multi-disciplinary spina bifida and hydrocephalus hospital clinics as possible, so please look out for us at your child’s next appointment.
Your experiences are important in helping us shape the Little Stars service to meet your needs. Look out for an introductory survey that will be emailed to you soon. To find out more about Little Stars or to find out about similar projects in Wales and Northern Ireland, please email us or call 01733 555988.
Autumn 2019
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Hydrocephalus and Health Many of our members have hydrocephalus only, albeit as a result of many different causes. The condition can cause a wide range of symptoms, and severity can differ considerably between individuals. Whilst some of the challenges presented by hydrocephalus are well documented – headaches and over drainage, for example - others are less recognised, even by doctors. Here, we discuss navigation, balance and bladder issues and navigation. Finding your way is made easier today, thanks to a range of apps available to download to your mobile devices – Google Maps being perhaps the most popular. All you need to know is the postcode or street name that you want to go to. If you’re unsure of how to use these apps, local libraries often run free or affordable courses on computing and smartphone basics. Alternatively you’ll find lots of easy-to-follow tutorials on YouTube. Losing balance is a difficult issue to live with. Unpredictability and a fear of injury can easily affect confidence to get out and about. If your loss of balance is new – or if it happens regularly – we’d recommend seeing your GP and optician. If your vision and blood pressure are as expected, it’s worth getting your shunt checked. People with programmable shunts sometimes find balance improves with an adjustment to the setting. There are a number of other possible explanations, including vertigo, which causes nausea, severe dizziness and an uneasiness when moving. Specialised therapy – known as vestibular rehabilitation – could help minimise these symptoms. Balance can also be affected by changes to the eyes or by physical changes, such as reduced mobility. If necessary, your GP may refer you to a specialist falls or balance clinic for a thorough assessment and treatment plan, and most clinics will have a specialist occupational therapist or physiotherapist who should be able to help. It’s always worth making sure that your balance reactions and core strength are good to give you the best chance of
steadying yourself if needed. A physiotherapist can help by assessing you for any muscle weakness or imbalance and prescribing specific exercises. One simple exercise to help with balance and leg strength is to practice standing on one leg. You can do this while you are brushing your teeth or talking on the phone. Aim to keep your balance on each leg for 30 – 60 seconds. Once you can do it with your eyes open, try with your eyes closed, just make sure you are near something secure to steady yourself! Bladder issues can occur with hydrocephalus and normal pressure hydrocephalus (NPH) as the brain’s control centre for the bladder is close to the ventricle and can become disrupted by the increasing size. Frequency and urgency can be very distressing and for some people can lead to a fear of leaving home. Your GP can help to overcome these difficulties. They can prescribe medication such as Vesicare (if it’s appropriate for you) or provide a referral to a urologist who can help find the cause and offer the best treatment options to relieve your symptoms and improve your quality of life.
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Autumn 2019
Sophie’s
story…
I’m Sophie, and I have a hidden disability. To look at me you wouldn’t know that I was any different, but I guess that is both the blessing and the curse of my condition. Doctors say that I am a bit of a conundrum. When I was 13 years old, I developed two severe curves in my spine and had to have my spine fused - after the surgery I developed chronic fatigue syndrome and missed two years of school, eventually muddling through my GCSEs.
I was worried my condition was incurable, then all of a sudden I had my life back (despite a further ten surgeries on my shunt in the years since then).
I managed to get my degree in veterinary nursing and was working at my local vet practice full time, but things started to go …We have as much pear-shaped…again. My new zest for right to try things as life was wonderful but it was also a everyone else – we might curse. I wanted to do everything but I just have to do it in a struggled with exhaustion and anxiety. I fought it for a long time before I was slightly different way… forced to leave work.
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But then, towards the end of my A-levels (English exams), I started falling over. At first I laughed it off as clumsiness but soon it got worse, to the point where I could no longer walk unaided. Eventually I was diagnosed with hydrocephalus - an accumulation of fluid was putting pressure on my spinal cord and the signals from my brain to my legs weren’t getting through. My doctors decided to fit a shunt, a decision that saved my life. On the day of the surgery I was admitted to hospital in a wheelchair, two days later I was walking out. The relief I felt was indescribable. For so long
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A brain injury affects every part of your lifestyle and it is often hard because it is a hidden disability in most people. People look at me and don’t know anything is different, meanwhile my brain is working over-time just to keep up with the normal functions and stimuli of life. From a mental health perspective, things do change after brain surgery. For me, it was Post Traumatic Stress following many long hospital stays, but I’m lucky to have a very supportive family who have helped me find new things to focus on, including art, animals and travel. Sure, long haul flights aren’t much fun once the pressure gets to me, but now I take several shorter flights, or explore by coach. I’m committed to educating people about hidden disabilities, and what we can achieve. We have as much right to try things as everyone else – we might just have to do it in a slightly different way. Yeah, I’ve got a lifetime doctor’s ban from boxing, jumping out of a plane and bungee jumping, but trust me, I have and will continue to find ways to get my adrenaline pumping. Nothing will stop me from living my life. I’m back at work doing the job I love, working part-time and on specific jobs that play to my strengths and make me feel like a part of a team.
Autumn 2019
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Steph’s story…
I was born in Leicester in 1961. My mum was told by her midwife that something was wrong, but they weren’t clear about what. A few weeks later, mum spotted a lump on my back, and realised I hadn’t been moving my legs. It wasn’t until she took me to a clinic at six weeks old that she learned the truth - I was referred to a specialist who confirmed that I had spina bifida. “Will my daughter ever walk?” mum asked. “She’s probably never even going to sit up,” was their response. Growing up, I didn’t really realise I was disabled. I couldn’t walk, so I crawled, or my parents carried my everywhere – I just thought that was normal. My parents did a brilliant job bringing me up, and never treated me differently to my brother.
because it put me amongst children who were like me. I’ve never let spina bifida stop me. I married my husband Graham 20 years ago and we have three children. I recently retired after 17 years working for Leicestershire Police and had to decide what to do next.
I was visiting my son in London when he asked what I was going to do next. I told him I’d always wanted to write and he told me to go for it. That’s when I decided to write a book about my experiences. I just want to share with people what …I’ve never let spina it was like back when I was born and bifida stop me. I married explain to people what it’s actually like my husband Graham 20 to live with it now.
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years ago and we have three children…”
It was only as I got a bit older, I started to realise I was different. I remember very clearly, I was eight or nine years old, and I saw a letter on the table that said “The Chronically Ill and Disabled Person’s Act”. I didn’t know what it meant, so I asked my brother. “That’s you,” he said. That’s when it dawned on me. Regular schools couldn’t accommodate my needs, so I was sent to boarding school when I was 11. It was probably the best thing that could have happened to me,
I called the book Crotch Height Perspective - that’s how life looks from my wheelchair. I came up with the name when I went to watch the Rocky Horror Picture Show. I didn’t know much about the show before I went, so I was just sat there watching the men stood in their stockings! Recently, I met up with an old school friend who has brittle bone disease – I asked her “If you could change one thing about your life, what would it be?”. She said she’d want better teeth, and I said I’d want feet that fit into shoes properly. Neither one of us said we wouldn’t want to be disabled. Steph’s book is available to order here through Amazon.
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Autumn 2019
Fantastic Family Fundraisers Together is a great platform for Shine to share stories about our members, their experiences and achievements. In this issue, we pay particular tribute to some of our many wonderful parents who are some of our most dedicated supporters.
Freya and Amy “…I want to give something back to Shine as they helped me…” (Freya) Freya has had many difficulties since she was born. She caught a severe case of measles at 17 weeks. It was touch and go and we were passed from pillar to post as they struggled to give us an explanation. She was also diagnosed with motor dyspraxia with hypertonia, joint hypermobility, club foot and vitamin D insufficiency. Her dad, Nick, and I were convinced there was something else going on. We pressed for an MRI scan to no avail, then, after Freya continued to struggle at school, they finally agreed. They had found a cyst and excessive fluid on her brain. It was one of the worst days of my life when the surgeon told us she was going to need brain surgery. Our little girl was born with a cyst and hydrocephalus and it dawned on us that we could have easily lost her to a silent killer. After surgery and an infection she recovered well. It was two months before she could return to school on a part time basis and she continues to
face many challenges since her surgery. Shine have supported our family since Freya’s diagnosis and we wanted to raise money so that others could benefit from the support and advice we’ve received. Through a series of cake sales, raffles, awareness events and other fundraising activities, Nick, Amy and Freya have raised over £3,000 so far. Amy most recently braved a Skydive – we can’t wait to see what she has in store next!
Autumn 2019
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Leanne, Matt and Ellie-Mai “…I can’t believe how much she’s done in a very short time. My little miracle…” Last year, myself and Leanne planned our first child together. To our delight we were blessed to be having a baby girl who we have named Ellie-Mai. On our 11 week scan it was picked up that she would have spina bifida. It was a step into the unknown – we understood that ours and Ellie-Mai’s life would be difficult at times and different from the normal life we know. Ellie-Mai was born early to help stop the build of brain fluid by being able to have a shunt fitted sooner. She is expected to have severe learning disabilities and be severely handicapped. This doesn’t effect in any shape or form the love we have for our baby girl.
Matthew gets a warm welcome at the end of the race!
I have been fundraising for Shine to raise awareness of spina bifida and hydrocephalus and raising money to bring support to other families that will be blessed in the future with a child with these conditions. I have been running 10K races including Great North Run and Great Manchester Run, arranging Wear Yellow at School and Charity football games raising £1296.25 so far! I wish to thank everyone that’s supported us and thanks to Shine. Matt Stothers – Ellie-Mai’s Dad
Val and Susie “…These events are my way of remembering my beautiful girl, who too, loved helping others…”
(Above) Susie with friend, and TV personality Claire Sweeney
I first started to raise money for Shine (then ASBAH) in 1969 when my daughter Susie was born. They helped us so much, as we’d never heard of spina bifida before – as Susie grew up, she loved to raise money for charity and used to make paper flowers to sell with the money she’d raised helping to buy equipment for our local hospital. She’d help any charity which asked for help, but her favourite was always Shine.
Susie used to say to me, “Mum, when you feel sad or lonely, go out and help somebody – when you help somebody, that helps you” . How right she was. Sadly, we lost Susie in 2001 at the age of 32 – I was devastated and upset, but her wise words stayed with me. I wanted to do something positive in her memory, and so in 2002, I held my first Susie Sunshine Walk. I’ve held one every year since, and am so glad that the money raised is helping families across the UK – Susie would love that too, Shine liked the idea so much, they have even started holding their own Sunshine Walks across the country - I'd really recommend taking part, it’s a great way to meet other people and families who’ve shared the same experience. This year, I went one further, holding a Susie Sunshine Summer Dance which raised over £800, taking our total to over £4,600. I’ve found people so helpful when planning my events and received such goodwill. These events are my way of remembering my beautiful girl, who too, loved helping others and I will continue helping Shine who were there for me all those years ago when I didn’t know who to turn to.
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Autumn 2019
ShrethdedSkinategpaurkps Angus was born with spina bifida myelomeningocele. He has all the associated issues you might expect - he walks with an ankle foot orthotic and uses a wheelchair over longer distances. This aside, he’s the most determined kid we’ve ever known and has spent his life surpassing everyone’s expectations. Inspired by Aaron “Wheelz” Fotheringham, Angus, now aged 8, is hooked on a sport called WCMX (Wheelchair Motocross). WCMX competitors use their wheelchair on the skate park, and last year, Angus told us he wanted to pursue it further – he held his own fundraiser, a sponsored wheel, to raise enough money for a lightweight wheelchair to help him get started, then with help from another charity, purchased his own bespoke WCMX chair. He hasn’t looked back since. In August, he travelled to Cologne to compete in the world championships, placing 5th in the under 16’s beginners division. Considering he only took up the sport a year ago, we were immensely proud of him – the journey it’s taken him on is amazing and we’re astounded by the progress he has made and how his confidence has grown. It’s made him even more resilient through falling, and learning to always get back up. We’re also incredibly grateful to Lily Rice, a gold medallist and women’s world champion and her dad Mark, who’ve taken Angus under their wing from the start – it’s so important that kids with physical difficulties learn to become competent and capable adults and this sport has the potential to change millions of children’s lives for the better. Despite Angus’ physical difficulties he leads a full, active and joyful life. He has many special interests
and passions. Whilst he isn’t skating he adores animals - especially snakes! - basketball cards and fossils. We know he’ll continue to break down barriers and enjoy his life and we feel really lucky to have him to give us this perspective on life. We wanted to share his successes to inspire other families and kids with spina bifida to pursue their dreams. The medical side of SB can be so overwhelming for when you first receive a diagnosis, it’s hard to see the amazing gift you are really getting. We had no way of knowing how amazing Angus would be and wish we had been able to chat other parents who had older kids.
Autumn 2019
Everything you need to know about Pressure Ulcers Pressure ulcers are damaged areas of skin caused by pressure. They can happen when part of the body is in contact with a surface for long enough to stop or slow the blood supply, starving the area of oxygen and nutrients, and causing skin and tissue cells to die. Anything pressing against your skin can cause an ulcer – tubes, calipers and braces, or even sitting on something like your phone or a remote control. The problem can be worse for anyone who needs to remain in one position for long periods. And since moisture can also cause skin damage, continence problems can further increase the risk. Any part of your body that’s put under pressure can develop an ulcer, but they’re most common on the bony parts, such as the heels, elbows, base of the spine and buttocks.
Don’t forget your feet! The heel is the second most common site for pressure ulcers, but they are preventable. Where possible, keep your heels free of pressure. Good quality, well-fitting shoes are essential. You may want to ask your GP to refer you to an orthotics centre to have shoes made especially for you - the styles are much better than they used to be! Always use your footplates to support your feet and stop your legs from ‘hanging down’, which is bad for the circulation. If you wear orthotics (splints) make sure they fit well and are not rubbing. In collaboration with PUPIS, Swansea Bay University Health Board.
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How to prevent pressure ulcers: Check your skin Check your skin at least twice a day, using a mirror for those hard-to-see areas. Be aware of any redness on your skin, especially where sensation is limited - this could be the first sign that you need treatment. As sores can quickly become infected and difficult to treat, the earlier you take action, the better. Keep moving Change your sitting position frequently during the day and try to relieve pressure from your bottom for at least part of each day. If you think you might get distracted, set an alarm to remind you to move about every 30 minutes. Eat well Make sure you eat a nutritious diet and drink plenty of fluids to keep your skin strong and healthy. The perfect fit Make sure you have a well-fitting wheelchair with a pressurerelieving / reducing cushion. If you have calipers or other mobility aids, make sure they also fit properly. And if you’re still growing, be certain that your equipment is adjusted regularly. Take care You’re more at risk when you’re poorly – it’s harder to move and you may not eat as well as usual, both of which make it harder for your skin to cope with pressure. You can’t always avoid illness, but look after yourself if you’re feeling below par. Seek advice When you see a reddened area of skin, call your GP for advice straight away. Don’t wait to see if it improves on its own – if left untreated they can get worse or take a lot longer to heal.
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Autumn 2019
Get Involved and Shine! More than 50 guests attended our first ever Get Involved and Shine event, hosted by the University of Bedfordshire this July.
The event, which was designed to promote health, wellbeing and the benefits of an active lifestyle, gave members the opportunity to try their hand at a range of accessible activities, and the chance to meet others with spina bifida and / or hydrocephalus.
Dr Andrew Mitchell is Head of School of Sport Science and Physical Activity. He said, “It was our pleasure to host this event with so many visitors on campus throughout the day.
With members travelling from across the United Kingdom to attend, we’ve had some wonderful feedback, and plans are already underway for an even bigger event next year.
“Numerous parents told me that this was the first opportunity their child had to try wheelchair basketball and cheerleading or frame football and their able-bodied siblings and parents also had a try, which was great to see.
Shine would like to thank the following for their varied and vital contributions to the day: • Andrew Mitchell, Rachel Champion and the UoB team • Russ Shaw & the Flitwick Eagles (Football) • Fiona Carey from Hereward Heat (Wheelchair basketball) • Teela Hughes from Music 24 (Music Therapy) • Katy North Academy of Dance & Cheer • Jane Butcher from Fit For Your Life (Yoga) • Gabriel Galea, UCL & Photocentric • DOG A.I.D. (especially the amazing Coco!) • Remap charity • Horizon Sports Club • Carers in Beds • The Disability Resource Centre • Tony from Eat Gelato (Ice cream van) • Ezee cabs • Waitrose & Lidl, Goldington Rd Bedford, for providing refreshments • Our fabulous Shine volunteers • And all who attended – members, family, friends, supporters!
“I have had lots of great feedback saying that the team of academics and students were inspiring, insightful and approachable. “As someone living with spina bifida, it was a very proud moment for me as Head of School and I have no doubt that as a team, albeit small, we made a real impact on these families and that was my goal. “A big thank you to my team for their time, expertise, compassion and professionalism.”
“…The time and effort of
so many people that was spent in making sure all the children / young people had an amazing time and the information shared. We met some truly amazing people…”
“…It gave a lot of
opportunity to try things, learn things and meet other people…”
so al g us k ill in l e w h a e . e nc h in lau ep W 20 e! Sh e c ss 20 c b ro ne ary spa yd e ru is H ar Febch th Aw in Wat
We’re inviting everyone to go ‘Back to Front’ and get behind Spina Bifida Awareness Week, which runs from 25th - 31st October 2019. Please help us to raise awareness of spina bifida by making a #BackToFront pledge on social media to bring the ‘back to the front’ of people’s minds and tell someone about living life with the condition. Director of Fundraising and Marketing, Teresa Hicks, says: “We’ve worked hard with a cross section of members to understand what you want people to know about living with spina bifida. “It’s a complex condition and it would be fair to say that no two experiences are exactly the same. But the common theme throughout was that people with spina bifida want to tell the world that they can do every day things, just in different ways. “Of course there are challenges, but we hope to share the message that with the right support and expertise, we can tackle these and live as full-a-life as possible.” Pledge cards – which are useful tools for starting
conversations – can be downloaded here. And anyone who goes on to share their pledge on social media with the tags #BackToFront and @ShineUKCharity will be entered into a free prize draw for the chance to win a £50 Amazon voucher (T&Cs apply). You could also host a Back to front event at your workplace, school or social clubs! By collecting sponsorship for wearing your clothes back-to-front – and encouraging others to do the same! – you’ll not only raise awareness, but also funds to help us continue to reach out and help our members. Poster templates to help promote your fundraiser are available here. With your help, we’ll spread the message that people aren’t defined by a diagnosis of spina bifida, and that we can lead full and rewarding lives just like anyone else.
A limited-edition t-shirt has been launched to mark the campaign. Order yours today by calling 01733 555988!
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Autumn 2019
Shine is almost entirely funded by the public. We raise money through donations, legacies, community fundraising, events, retail and corporate partnerships. Here are some of your latest achievements...
Superhero Tri! They came, they saw, they conquered! Shine’s very own superheroes Sophie, Quinton and Theo took part in our first ever Superhero Tri this August competing with friends, family and a famous face in the UK’s only fully accessible triathlon. Using a range of devices, the teams, swam, cycled and walked their way past the finish line and alongside our guest competitors, paratriathlete Lizzie Tench and challenge specialist Shaun Gash, who together raised over £6,700 for Shine. We extend a huge thanks to our corporate partners at Fieldfisher and Price Waterhouse Cooper for their incredible support, and to our newest ambassador, Hollyoaks star Sarah Jayne Dunn who completed the course with Theo and his family. If you fancy yourself as Shine’s next Iron Man or Captain Marvel, why not get your name down for next year’s event, or, if you can’t wait that long, sign up now for the Winter Wonderwheels challenge on Sunday 1st December.
Theo, family & Sarah Jayne Dunn
Wonderwheels is suitable for everyone, and although we can’t guarantee as much sunshine, you’ll have every bit as much fun as you cycle, walk, run or push your way around Dorney’s spectacular lake. Choose between 1k, 5k or 10k distances on a fully accessible course. Email us for details!
Shaun Gash & family
Quinton
Sophie
Lizzie Tench & Tim Bird
A Great Day Out! Our annual sunshine walks took place across the country over the summer, with family and friends pulling on their yellow t-shirts and turning out in force to raise over £1,700. These popular, leisurely strolls, which culminate in a picnic and the chance to connect with other families are growing in popularity each year. If you’d like to arrange a walk near you, contact us!
Autumn 2019
Action Men! A big shout to Allister Preston, who took on an eyewatering 182 mile cycle challenge, the Wainright Coast to Coast, raising a fabulous £380 for Shine who’ve supported his nephew, and daughter Lily’s best friend Luke, who was born with hydrocephalus. Meanwhile, in Pembrokeshire, Joe Butler, a personal trainer, was inspired to fundraise for Shine after witnessing the efforts of his client, Shine member Amelia (pictured). He pulled on the famous yellow vest to take part in his local Triathlon, raising over £380. “I wanted to give back to the cause and show people in Amelia’s situation that it’s not impossible to keep fit and active”
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Give as you Shop Only 3 months until Christmas! Thinking of buying presents online soon? Whether you’re doing your Christmas shopping, buying birthday presents or ordering the groceries, you can raise money for Shine with every order you place! Just sign up via the below quick links, and when you shop online they will add a donation at no cost to you.
A regular at Shine member Emmy’s gym, Nigel Hammond recently entered the South East Strongest Man contest to raise money for Shine - in honour of Emmy’s daughter Willow who was born with spina bifida and hydrocephalus. Willow had a front row seat as Nigel faced legendary challenges such as the Viking Press, and proved you’re never too young to fundraise as together, they raised a whopping £1422.
EASYFUNDRAISING GIVE AS YOU LIVE AMAZON SMILE
Christmas cards now available! A new range of Christmas cards have been launched this year and are available to buy NOW! Each pack of 10 cards costs £3.50 (plus P&P). Order yours today by calling 01733 555988.
Remember a loved one… Have you seen our new Shine Stars tribute pages? Shine have partnered with Much Loved to bring you a place to remember your loved one online.. You create a personal special place by adding comments, pictures, music, videos and much more. You can also light a virtual candle and set up online fundraising collections to mark a special occasion. You can do this all on our personalised Shine Stars Tribute Pages. It is simple to set up and completely free! Celebrate your loved one today by creating your own tribute page here
Shine Events for Members…
To find out more or book up for an event, phone us on 01733 555988 or email events@shinecharity.org.uk. We also put details of events on our website www.shinecharity.org.uk
Southern Region: Visit to Houses of Parliament (Adults) Westminster, London 12th October Visit to Design Museum (Adults) Kensington High St, London 3rd November Christmas Party Wacky Warehouse, Willenhall 1st December – 10am to 12pm Meal and Bowling (Adults) London o2 8th December Cambridgeshire 0-5s Groups Shine HQ, Peterborough 9th October, 13th November and 11th December 10am to 12pm
Northern Region: Shine Teenies Jake’s Sensory World, Netherton 4th November
Wales: “Are you sitting comfortably?” Pressure sores seminar + more Scout and Guide Headquarters, Swansea 17th October South Wales Ser Bach – Halloween Fun Tredegar House, Newport 24th October
Paediatric Health Hub TBC, Llandarcy 6th November North Wales Ser Bach – Christmas Party Venue TBC 1st December West Wales Social Group – Christmas Lunch Cardigan Golf Club, Cardigan 3rd December
South Wales Ser Bach – Half Term Event Venue TBC 21st February 2020 Volunteering Celebration Event Venue TBC 3rd March 2020 Paediatric Health Hub TBC, Pontypridd 4th March 2020
Northern Ireland:
Paediatric Health Hub TBC, Pontypridd 4th December
Children’s Group TBC, Belfast 12th October
Swansea Social Group – Christmas Lunch Towers Hotel and Spa, Swansea 5th December
Adult’s Group Bellini’s, Newry Date TBC
South Wales Ser Bach – Christmas Party Cantref Farm Park, Brecon 7th December Christmas Party TBC, Newport 18th December Paediatric Health Hub TBC, Carmarthenshire 8th January 2020 Paediatric Health Hub TBC, Llandarcy 5th February 2020 North Wales Ser Bach – Half Term Event Venue TBC 15th February 2020
Physiotherapy Day Venue TBC 25th October Family Conference The Junction, Dungannon 26th October Children’s Group Jethro Centre, Lurgan 9th November Adult’s Group Bellini’s, Newry Date TBC Physiotherapy Days Venue TBC 27th and 28th November Christmas Party TBC, Belfast 7th December
Here to help...
Please do send any comments or enquiries to us: P: Together Shine, 42 Park Road, Peterborough PE1 2UQ
01733 555988
www.shinecharity.org.uk
ShineUKCharity
Twitter.com/SHINEUKCharity
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