A note from Kate, our CEO
Welcome to this Spring edition of Together!
Instead of my usual introduction to Together, I thought I would focus on the recently announced benefit reforms, which are causing a lot of concern across our membership. These reforms initially affect England and Wales, but there will also be work between the UK government and the NI Executive to bring these changes into Northern Ireland too.
Whilst these reforms are unlikely to come in for at least a year, Shine will be working hard to:
• Campaign against the reforms that will disadvantage you
• Respond to Government consultations to represent your views
• Keep you updated on the changes and timelines, when available
• Answer your questions
• Produce guidance to help you navigate through the changes that might affect you
• Continue to offer support and guidance in benefits claims, re-assessments and appeals
• Educate the DWP and others about spina bifida and hydrocephalus
We will also be putting on a series of online drop-in sessions for members to discuss your concerns and share thoughts so look out for further information.
You will notice that we have included quite a bit about fundraising in this issue too, which may seem a contradiction to my message above.
We need our Shine community to get behind us so that we can continue our free services for whoever needs us. You can help by donating a little something if you are able to, and/or encouraging others – family, friends, schools, businesses and anyone else you know – to take part in fundraising for Shine. Shine’s ‘Go Yellow’ day in June might be just the ticket!
Please remember, we are here whenever you need us.
Best wishes
Shine out and about at the British Paediatric Neurosurgery Group (BPNG)
Some of Shine's Health and Services team attended the British Paediatric Neurosurgery Group (BPNG) Meeting in Bristol in March. The event was attended by neurosurgeons and specialist nurses from all over the country.
We were pleased to have had the opportunity to learn about the latest advancements in paediatric neurosurgery and exchange ideas with experts.
Shine’s physio, Bronwen Warner, was invited to speak to the delegates about Shine’s physio service and how we are supporting children and adult members.
Shine staff spoke to clinicians about our services, the benefits of us attending NHS clinics, and the additional support we can provide on the broader social issues, which are important factors for someone’s overall health and well-being.
If you're interested in learning more about research check out the news page on our website and choose 'Health and Research'. www.shinecharity.org.uk/news
Normal Pressure Hydrocephalus
Normal Pressure Hydrocephalus (NPH) is a condition that mainly affects individuals over 60 years of age. It is most commonly recognised by the onset of three symptoms: increased difficulty walking, cognitive changes, and bladder and bowel concerns.
NPH can present in a similar way to other conditions experienced by older adults, such as Alzheimer’s and Parkinson’s diseases. NPH is a potentially reversible cause of dementia, and so it is important to have an early and accurate diagnosis.
This year, we will be hosting our second annual NPH Awareness Week during the week of May 19th to shine light on this condition.
If you are interested in learning more about Normal Pressure Hydrocephalus, the symptoms and treatment associated, and support resources available, you can find out more on the Shine website at www.shinecharity.org.uk/NPH or by calling 01733 555988 to learn more about our upcoming informational sessions.
Shine events
Shine runs a whole host of online events to suit all ages, including:
• Little Stars Zoom sessions – we have two groups (age 5-8 and age 8-12) for little ones and parents/carers to join in some fun online activities and be part of a supportive group.
• FIRE monthly social for teens. There’s something new every month, such as bowling nights, dessert and chat, online fun with Traitorsstyle games.
• Shine Social: Book Group meets every month, with a different book up for discussion each time. Upcoming books include Patience by Victoria Scott, Her Majesty’s Royal Coven by Juno Dawson, and The Bordeaux Book Club by Gillian Harvey.
• Shine Social: Coffee, Chat, and a Quiz or two! A social group run monthly, free for anyone to join. Grab a coffee and, well, join us for a chat and a quiz or two.
• Chatter Matters: a weekly group for chattering about anything that’s mattering to you at the moment. Drop in and meet some of your fellow Shine members.
…plus all sorts of meet-ups in person throughout the year
Sign up to events at www.shinecharity.org.uk/events
Why not try something new
Fancy trying something new for your physical and mental well-being?
Physical activity improves strength, balance, flexibility, and mental health by boosting confidence, reducing stress, and alleviating anxiety. For people with mobility challenges it can be difficult to find something that works for you, but taking on a physical activity is such an empowering way to enhance your quality of life.
Sports like paracanoe and wheelchair basketball offer great options.
Paracanoe, adapted for athletes with physical issues, has training camps at the National Water Sports Centre in Nottingham this spring and summer.
Find out more: https://paddleuk.org.uk/paracanoe Wheelchair basketball is a great sport for anyone of any age.
To find wheelchair basketball clubs, go to britishwheelchairbasketball.co.uk/get-involved or explore local disability organisations.
Seated yoga is also excellent for building strength, staying flexible, maintaining balance, and boosting your mood.
Women’s Health: the importance of screening
All women live with the chance of developing certain health issues; awareness helps in managing the risk. Breast cancer affects around 56,000 women each year1, and cervical cancer poses a threat to health of younger women.
Screening programmes are designed to catch breast cancer and cervical cancer earlier to improve the chances of successful treatment. In 2021, 85% of breast cancers were detected at Stage 1 or 2.
Last year our Health Team surveyed women with spina bifida about their experiences and found that around 1 in 3 women had had difficulties accessing breast screening and around 1 in 4 had found barriers to cervical screening. These included steps and stairs, lack of suitable hoisting equipment, or even height-adjustable examination couches for smear tests.
Some issues raised were specific to breast screening for women who were full-time wheelchair users, women with curvature of the spine, or women with reduced upper body strength. For some it wasn’t feasible to maintain the position the mammography machine needs. As the mammogram uses x-rays, you cannot have assistance in the room on safety grounds while the images are taken. Powered wheelchairs are often not permitted as the controls for positioning the mammogram machine are on the floor. If these controls were accidentally activated by a powerchair, it could cause an injury to the patient. To get into the right position for imaging from a manual wheelchair, the side of the chair needs to be removed, or you need to safely transfer into a special mammography chair or stool.
There is clearly plenty of room for improvement. There’s strength in numbers, so Shine has joined the SIA’s campaign for care equality for disabled women. One issue is the current design of the mammography machine, which requires the patient to be in a certain position. Women need to raise their arm above
their breast, and the breast must be separable from the abdominal wall; this posture must be held throughout the scan. This limitation of the testing can lead to delayed or missed breast screenings. As a result of SIA enquiries, University of York researchers are developing a robotic arm for mammograms for women with reduced mobility/strength.
Visit the SIA website to find out more and please sign the petition: www.spinal.co.uk/campaigns/ourcampaigns/womens-health/
What you can do – know yourself, know your options
It’s important for every woman to check their breasts once a month and to have a good idea of how they usually look and feel. You should see your GP if you notice changes. If you’re currently unable to benefit from mammograms, talk to your healthcare professionals about how to examine your breasts yourself, or ask them to do this for you if it is not possible.
Attend your screening appointments when invited, if you can, and contact your GP to discuss your needs and the best location for you. This might mean attending a different GP surgery, or more distant hospital. If this would make it difficult for you to attend, ask about transport. Booking a double appointment can give you extra time so you don’t feel rushed if screening takes a little longer for you.
You can safely have a mammogram with a shunt fitted but it’s helpful to let screeners know as tubing may appear on scans.
Don’t forget: your health is a priority. You are entitled to adjustments that enable you to use these important screening services.
Continence updates
Our Children’s Continence Service
In the last issue of Together, we promoted our Children’s Continence Support Service, which offers one-toone and group support around managing continence.
We are pleased to report that since July last year, our Children’s continence service has supported 139 children (aged 0-17) and has helped them to better understand their continence and feel better connected to other young people with similar experiences. It’s also helped children and young people to manage their continence with greater independence at home and at school; and feel more confident asking for support when they need it.
Continence support and information for anyone at any age.
Whether you are a Shine adult member, a parent/ carer of a child or young person with spina bifida and /or hydrocephalus please contact the Shine Health Team.
As always, contact us at firstcontact@shinecharity.org.uk or 01733 555988 for more information
Campaigning for better continence care
We know that the need for good continence support during childhood is greater than ever, and that’s why we’ve signed the charity Cerebra’s petition calling on the government to develop national, fit-for-purpose guidelines for paediatric continence services for disabled children.
Read Cerebra’s report, and add your name to their petiton, at https://shorturl.at/CeD7a
Thank you to the funders who are supporting this work:
Registered charity in England and Wales (802052) and Scotland (SCO039557)
Shine ON Groups
May is Bladder Cancer Awareness Month!
Look out for important information and help raise awareness.
Thanks to the lottery for funding our ‘Shine on Pain’ and ‘Shine on Wellbeing’ groups.
Shine on Pain is a 7 week Zoom group, designed to explore management strategies for people experiencing long term pain.
• 7th May - 25th June (with a 1-week break on 4th June) @1pm
• 26th August – 7th October @10am
Shine on Wellbeing is a 5 week Zoom group, designed to explore strategies to look after your mental wellbeing.
• 9th July – 6th August @1.30pm
• 30th October – 27th November @11am
You would need to be available to join all sessions to get the most out of the group. Please note, expressing interest doesn’t guarantee a space in the group. Shine will contact you to discuss your individual needs and ensure this is the right fit for you.
MaiahMeet
Growing up with spina bifida and hydrocephalus hasn’t been easy for Maiah. During her years at school and college, she has faced some cognitive challenges due to her hydrocephalus such as problem solving, especially in Maths, and social aspects like making friends and navigating day to day life.
“I want to highlight not only my achievements but also the challenges and problems for people who live with hydrocephalus and a shunt, raise awareness of shunt malfunctions, and to anyone who is going through this, know you are not alone.”
At a recent check-up, the MRI scan showed her shunt was malfunctioning and she needed emergency surgery. This came as a shock to Maiah as she hadn’t been experiencing any symptoms that she was aware of to show anything was wrong. She has just had surgery to fit a programmable shunt, which has thankfully gone well.
accessible for people in wheelchairs, and is better equipped to let the college know what she needs to overcome some of these.
“I am a performer who loves being on stage, dancing, acting, and singing.”
We first shared Maiah’s story in 2022, when she had just performed on stage at the 2022 Commonwealth Games Opening Ceremony in Birmingham. That arose when Shine mentioned a dance opportunity in Birmingham and her mum encouraged her to take the leap. She loved it and kept going. “It’s all thanks to Shine really.” Maiah hopes that it has highlighted the talents of disabled people, and if chosen you should take the opportunity to shine!
“…I am a performer who loves being on stage, dancing, acting, and singing…”
Maiah currently attends a performing arts college in Wolverhampton. She had a tricky start to college life, from facing obstacles such as the transport, nursing involvement for personal care, to being on the right course.
Shine have supported and advocated for Maiah to ensure that college were doing all that they could regarding accessibility, offering information and advise on how best to support her learning as well as practical knowledge on supporting her independence and rights within college. This was alongside Kate, Maiah's Outreach teacher from Wolverhampton outreach services who has known her for many years, who says Working with other professionals to ensure Maiah has an inclusive education with all she needs to thrive has been challenging but she has blown us all away with her resilience and passion for performing arts.
Shine Support Worker, Laura
Maiah now has the confidence to speak up about the barriers she has encountered, like the stage not being
Maiah enjoys being part of Shine’s teen groups. She has joined some Zoom sessions, and attended a face to face meet up last year. She finds it comforting meeting other young people going through similar experiences and can relate to them.
Now age 18, Maiah is transitioning into life as an adult and learning how to become more independent. This year she has begun using the bus and train by herself to get out and about and go to college. Before she needed support with navigation. Her mum or carer used to go with her and have helped her become independent. She travels to Birmingham every other weekend and loves browsing the New Street Station shops!
She is also learning how to self-catheterise, which is another big step for her.
Maiah feels she has a bright future ahead and is learning how to navigate day to day life as an independent adult living with spina bifida and hydrocephalus – and she is smashing it!
To discover more about Maiah, follow her on Instagram @maiahbb_06
PenelopeMeet
Penelope’s parents share an insight into their daughter’s journey so far. It has been one of incredible strength, resilience, and unwavering determination.
"Our beautiful daughter Penelope was born in October 2014 with spina bifida and hydrocephalus. Our journey began long before that when we found out about her condition during the 20-week anomaly scan, a moment that filled us with worry and uncertainty. But we knew we had to be strong for her.
When Penelope was born at Kings College Hospital, she immediately underwent back closure surgery and had a VP shunt put in place. From the very beginning, Penelope faced numerous challenges, but her spirit was unyielding. She learned to walk, though only for short distances, as she tires quickly and uses splints for support.
“…Shine has been a tremendous support for us as parents, especially in the early days when we had no idea what to expect…”
One of the most challenging hurdles was teaching Penelope to self-catheterise. It was a difficult process, filled with frustration and tears. But with lots of encouragement and perseverance, Penelope has mastered it, taking a significant step towards independence. We always encourage her to push herself, and we believe this is why she has done so well with her condition.
Penelope's weekends are filled with activities she loves. She participates in gymnastics, giving it her best shot despite the struggles. She also loves swimming, where she feels unrestrained by her physical limitations. Every week, she attends Guides, which she absolutely loves, and recently, she came second place in a cake competition, a moment of pride for all of us.
If you ask Penelope her favourite thing to do, she
will excitedly tell you about her love for holidays. We cherish visiting new places and experiencing the world together. Even though the most normal of tasks can be tricky, we always find a way to make it work.
We are incredibly proud of all that she has achieved.
Shine has been a tremendous support for us as parents, especially in the early days when we had no idea what to expect. They have provided invaluable information and guidance. Currently, we are trying to find funding for a new trike for Penelope, as she has outgrown her current one, and Shine has been helping us with this. In the last year, Penelope has been attending Shine’s Little Stars Zoom events, which she very much enjoys. She takes comfort in knowing she is not alone as she grows up and becomes more aware of herself."
Penelope's story is one of courage, resilience, and the power of love and support. Her determination to push herself and our unwavering encouragement has helped her achieve so much. Penelope's adventurous spirit and positive outlook on life will undoubtedly lead her to even greater heights as she continues to grow.
On 20th June 2025, we're all going yellow to raise awareness of spina bifida and hydrocephalus and bring in some vital funds and we want to make it BIGGER and BETTER than ever.
Everything raised will go towards keeping Shine’s specialist services available for everyone living with spina bifida, hydrocephalus and related conditions. More details can be found at www.shinecharity.org.uk/goyellow
Get involved
Whether you wear something yellow, bake yellow cupcakes, sow sunflower seeds or sell lemonade - whatever you do, just GO YELLOW! We’ve got everything you need to make the day special – posters, quizzes, craft, and plenty of ideas.
We’re also running some Shine-y events that week, like our Go Yellow Picnic in the Park. Come along to Queen Elizabeth Park in Stratford, London or to Rowntree Park in York both on Saturday on 21st June (book on the Shine website under ‘Events’).
These are great opportunities to meet other members and get to know some of the Shine team better, as well as celebrating our amazing Shine community.
We’re here to look after you!
Contact the team on 01733 555988 or at fundraising@shinecharity.org.uk to get your Go Yellow fundraising pack.
Or if you’d like to talk through some ideas, get in touch!
Invite your family, friends, colleagues, community, nursery or school to join #GYFS too.
We’ve got template letters to tell your work or school all about Go Yellow and why it’s important, plus lots of inspiration to make it a great day for everyone.
Going Yellow I’m for Shine
Craft Yellow...
Candles or knitting, whatever their talent, ask your colleagues to get crafting and hold a craft sale
Wear Yellow…
Invite colleagues to come to work or work from home wearing a yellow item of clothing
Drink Yellow...
Bake Yellow...
Bake (or buy we won’t judge) yellow cupcakes and hold a bake sale
If you’re taking part in a virtual meeting, download our ‘Go Yellow’ background Go withYellow pets…your
Why not get your furry friends involved!
Yellow games...
Use our lucky squares game or sweepstake to create a bit of competition at work
Host a lemonade stand or serve other yellow drinks in the office kitchen Dye it Yellow!
Dye your hair yellow for the day (or longer)
Schools and STARs
Our Education service
"Thank you for being with us and all the continuing work you do. We are so grateful that you prioritised our school... thank you for all you do for them and other families, children and adults".
SENDCO, primary school
From nursery up to university, Shine’s Education service aims to support young members achieve their potential. As many of you know, spina bifida, hydrocephalus and related conditions affect people in different ways – likewise, they can affect learning capabilities differently too. It's why Shine offers this important service to make sure young people are being supported in education, academically and socially, in the best way possible for them.
How can we help?
Over the past year, Shine has helped 559 individuals with enquiries about education. Often, we meet young members just beginning at primary school, or going from primary to secondary, and worrying about the transition and how they’ll cope. Teachers haven't always come across the conditions, so often aren't fully aware of their impact on learning. The most common concerns are issues with concentration, memory, understanding of language, and information processing. These can also be compounded by missing classes for essential medical appointments, especially if absences are long-term.
It is Shine’s job to help! With sensitive adjustments, we can support learning, peer group relationships, and the wider family too.
STAR awards
Our approach is holistic, looking at an individual’s needs and their education environment.
Learning situations can be as unique as the individual, so we tailor our service to help younger members, and their schools, create a supportive environment for learning. We offer 1-2-1 advice on a range of topics including health, learning techniques, goal setting, and socialising. We also have online and face-to-face peer group meet-ups. For parents, we offer advice and guidance on all aspects of school life, including additional needs support in school, help with plans* for individual support and transition, information sessions, and peer support groups.
*England, Wales and Northern Ireland use different terminology for these plans
England Education, Health and Care Plan (ECHP)
Wales Individual Development Plans
Northern Ireland Statement of Educational Needs
For schools, we provide training on the conditions and work with them on how to support an individual student’s needs. We offer more generalised support such as classroom strategies, curriculum flexibility, and general professional development. And for schools that demonstrate outstanding commitment to helping young people, we’ve developed our STAR Awards.
Shine's STAR School Awards is a recognition programme. The award highlights exceptional teaching, innovative programmes, strong community involvement, and a commitment to pupil success.
To achieve the award, schools must complete seven commitments, including things like training for school staff, a school assembly, a disability-inclusive display, and various others. Once completed, schools receive a certificate and a plaque in recognition of their work.
“…Shine is an outstanding charity that has provided invaluable support to our school on our journey to achieving the SHINE School Award. Their guidance and assistance for both staff and parents have been truly exceptional, making a significant impact every step of the way…” SENDCO, from school achieving the STAR Award.
If you’re wondering about school and need some advice, then let us know – contact the Education Officer on 01733 555988 or firstcontact@shinecharity.org.uk. Or hop on our website to see how we can support you.
Heather Meet
Heather Hughes (from Llanfairpwlgwyngylll – the village with the longest name) life changed forever when she was 51 years old.
In April 2019, Heather was coming out of a theatre when she felt an enormous pain in the back of her head. She thought she had had a brain haemorrhage. She knew something serious had happened, and it had. She had suffered a Subarachnoid Haemorrhage and ended up being transferred from the local hospital to the Walton Centre in Liverpool.
She fell unconscious in Walton and had to have surgery on her brain - this left her with hydrocephalus and needing a VP shunt. She had never heard of hydrocephalus and was not sure how this would affect her life. In May of that year, her shunt was fitted, and after five weeks, she was allowed home.
She then suffered four mini strokes on her left-hand side and ended up in hospital again. A MRI found a clot in her brain.
Heather hit rock bottom and needed help. She was given emergency support from the local mental health team and counselling to assist her in coming to terms with everything that had happened to her.
It was then she was told about Shine. She got in touch and was advised about Shine’s Facebook Group and became a member.
Heather suffered another mini stroke on the right-hand side in March 2021 and this left her with a slight droop on her face. One of her work colleagues noticed that she was starting to become low in her moods and introduced her to cold water swimming.
Fast forward, and Heather now swims in the sea about three or four times a week. “I am totally hooked, and it is addictive. It has given me a new lease on life, and I can say hand on heart that cold water swimming has saved me”.
“…I can never thank this Shine Facebook Group enough as they were and have been a massive help to me - by helping me to understand what living with hydrocephalus means…”
“I can never thank this Shine Facebook Group enough as they were and have been a massive help to me - by helping me to understand what living with hydrocephalus means. The support I have been given has been amazing, and I soon realised that life was going to be different”.
Heather decided that she wanted to do something to show her appreciation to the group and Shine and to organise a fundraising event.
In June 2020, she had planned her fundraising event. However, COVID-19 had other ideas, so this event was put on hold. It finally happened in October 2022, and she raised £2,500!
In Spring 2024, she set herself another challenge to raise more funds for Shine. She decided to swim the 3.2km length of Llyn Padarn in Snowdonia, Wales. “I am no athlete and believe me swimming 3.2km in cold water was a big challenge”.
She started training whilst on holiday in Corfu, and by the end of the fortnight, she swam for two hours solid and completed 300 lengths of the pool. She continued her training with a trial run a few weeks before her challenge.
In September 2024, she set off from Penllyn Bridge in Brynrefail and headed off to the end of the lake in Llanberis. The current was against her, but she finally made it after 2hrs and 7mins.
“It was extremely emotional as my friends and family cheered me as I reached the end. When I stood up, my legs were like jelly and just gave way under me, but what a feeling of achievement knowing that I had completed my challenge and raised £2148 for Shine”.
Heather is now thinking of her next challenge! A huge thank you to Heather for supporting Shine!
Supporting Members Shine Legal Service in Action
Milly’s seemingly normal birth took a worrying turn when a health visitor noted a red mark on her back at two weeks, prompting GP advice. However, at her 6–8-week check, the GP dismissed it without note.
At nine months, Milly became severely ill, exhibiting developmental regression and increased head circumference. Tests revealed Dandy-Walker Syndrome and a dermal sinus tract, leading to a spinal infection and subsequent surgery complicated by sepsis.
Now a young child, Milly faces ongoing challenges including likely permanent left leg paralysis, bowel issues, and cognitive delay. Seeking answers, her mother contacted a spina bifida solicitor for advice. It was one of the two firms in the Shine legal service.
She needed help to understand if and what had gone wrong with the care Millie received during and after birth and what next steps could be.
Expert evidence revealed critical failings in Milly’s care: the birth mark’s significance was missed at birth, spinal abnormalities weren't considered, and no X-ray or paediatric referral occurred.
Had these steps been taken, timely surgery to remove the sinus tract would likely have prevented the devastating spinal infection and paralysis, potentially also limiting the extent of later brain surgery.
Shine Health
In a significant admission, the GP’s Letter of Response acknowledged the breaches of duty and their direct link to Milly’s injuries.
With liability established, the legal team is now focused on securing Milly’s future. They are gathering expert reports to fully understand her present and future needs for services, equipment, and support.
The legal claim aims to provide Milly and her family with a life as close as possible to what she would have had without the negligence.
This includes securing suitable accommodation, for therapies, access to appropriate education, financial independence for her adult life, and comprehensive care packages for both her childhood and future, ensuring her lifelong wellbeing and financial security.
Read more about Shine legal service here www.shinecharity.org.uk/legal
This year, Shine Health Direct is proud to celebrate 10 years of delivering care and convenience to over 1,000 members. Since 2015, our free, flexible home delivery service has been providing urology, stoma products, and prescription medications –discreetly and efficiently straight to your door.
Lesley, a Shine Health Direct Personal Advisor, shares, “I love connecting with members and knowing we’re making a real difference in their lives.” With monthly check-ins, personalised service, and flexible delivery options, Shine Health Direct is here to support your needs.
Shine needs YOUR help
If you ask people to name a charity, it’s usually well-known household names with big profiles. For niche charities like Shine, it’s different. We rely on people, not profile, to attract charitable support.
Do you have a personal connection that could help us to raise vital funds for Shine?
In 2025, we are asking our members and supporters to spread the word.
If you do one thing after reading this article, ask someone you know to support Shine, and help us to be there for anyone living with spina bifida and hydrocephalus.
Often people feel that they don’t have the ‘right’ connections to ask people for support, but our supporters and fundraisers come from all walks of life.
Here are a few ideas for how you can help:
1 Could you recommend Shine at work?
Many organisations offer staff the opportunity to nominate causes for charitable support.
You are probably familiar with Charity of the Year schemes, where a company chooses a cause to support, and staff rally round to raise funds.
Less well known are ‘Corporate Foundations’ or ‘Grant schemes’ where companies make grants to charities nominated by staff or offer matchfunding (where companies agree to donate a £1 for every £1 raised, for example) for staff who undertake fundraising activities for a particular cause. Examples include banks like Lloyds, Barclays and HSBC, Coca-Cola, American Express, PricewaterhouseCoopers, Alan Boswell Group, the Davies Foundation and the Access Foundation.
Find out about charitable giving programmes (sometimes known as ‘Corporate Social Responsibility’) where you work and see if there’s an opportunity to nominate Shine for support.
2 Could you recommend us to a local community group?
Often golf clubs, rotary clubs, masonic lodges or local sports teams are on the lookout for good causes to support. They are unlikely to come across Shine in a google search, so a personal recommendation is the best way for them to find out about our work.
3 Could you recommend us to someone looking for a challenge?
If you know a keen cyclist, runner or walker looking
for a new challenge, suggest they explore the ‘events’ section on our website www.shinecharity.org.uk/getactive to see the different activities we have available.
It works!
In the last year, personal connections have raised vital funds for Shine. People have chosen to support us through a sponsored hand cycle challenge, a Christmas craft store, raffles, walks, treks and runs, dress down (or up) days at work and birthday celebrations.
What difference can your help make?
Fundraising for Shine is a chance to raise awareness of spina bifida and hydrocephalus and support the vital work we do.
Funds you help raise could keep our helpline running, cover the costs of social events for members or sponsor a Shine Support Worker to attend clinics at your local hospital.
Most importantly, funds you raise mean we can be there to offer support, information or advice, free of charge, whenever people need us.
What Shine can offer?
If you’d like to introduce someone to Shine, ask a question or get some resources explaining our work and impact, please email fundraising@shinecharity.org. uk and we’ll get back to you as soon as we can.
If you are able to help, thank you! We really do appreciate it.
Thank You to our Fabulous Fundraisers!
It’s been a tremendously busy beginning to 2025:
Thank you to everyone who took on the challenge to GIVE IT UP! for January 2025, you truly inspired us! In total we raised £472 from the campaign.
We’ve had a bumper crop of running events happening – Bath Half Marathon, Barcelona Marathon, London Landmarks Half Marathon, Brighton Marathon and Brighton and Hove 10K, not to mention the London, Paris and Manchester Marathons.
Even when you weren’t running you were cheering our runners on – more than 2,000 of you supported our amazing London Marathon runners by donating. Thank you!
Regular givers have donated £21,011 since our last issue of Together, all of which goes straight towards Shine’s specialist services.
We can’t name everyone personally, however on behalf of everyone at Shine we’d like to say a HUGE THANK YOU to each and every one of you for everything you did and all the money you raised!
The Shine Lottery continues to be popular. If you haven’t played yet, check it out and be in with a chance of winning up to £25,000 plus other prizes: www.shinecharity.org.uk/lottery
Our virtual balloon races have raised significant amounts for Hydrocephalus Awareness Week, Empowering Young People and Supporting Adult Members.
Businesses have been getting involved in many ways and we’d love to work with more! Check out page 13 if you’d like to know how your business or employer can help.
Everything raised from these activities goes straight into providing our members with the advice, information and support they need. Every donation to Shine has the potential for profound impact.
Because of your generosity, since the last issue of Together, we’ve been able to:
Help 603 members get expert health advice and support the professionals involved in their care
Provide 165 members with advice and in-school training to support their learning and inclusion in education
Run several family events and peer support groups for new parents, children and older adults, including information sessions as well as social groups, like Book Club
Offer one-to-one support for 30 new parents who often feel at ‘breaking point’
Support 309 members with access benefits and guidance on effects of the upcoming welfare reforms
You've made all this possible by fundraising or donating – thank you!
Are you ready to take on an unforgettable challenge?
Shine's Yorkshire 3 Peaks Trek is your chance to conquer one of the UK’s most iconic hikes - 12 hours, 24 miles, and 5,000ft up hill and down dale, taking in the glorious landscape of the Yorkshire Dales National Park.
But this won't be a dilly-dally through the Dales. When you sign-up you'll be taking on the challenge of raising funds to support Shine's community. Everything raised will go towards supporting individuals, families, and friends living with spina bifida, hydrocephalus, and related conditions.
We’ve got spaces for individuals, and we’ve opened group spaces now too. Whether you want to take on the challenge with family, work colleagues, or a group of friends, now is the time to book - places are limited!
Shine's Sweet and Savoury Bake Sales
Everyone loves freshly baked treats and finding time to share a cuppa and a catch-up. So, why not host a bake sale for Shine? By baking and selling delicious goodies, you can support Shine's incredible work and make a real difference to so many.
When: Saturday 19th July, 06:30 - 19:30
Where: Horton in Ribblesdale, Settle, North Yorkshire Registration Fee: £30 Minimum Fundraising Pledge: £250
Find out more https://tinyurl.com/ShineY3P
To help you, Shine has a ‘Bake for Shine’ starter pack, filled with cake toppers, bunting, ideas and a Shine cookbook. All you have to do is register at https://shinecharity.tfaforms.net/f/bakeforshine, commit to raising some money and we will pop a pack in the post.
If you’re feeling inspired, here are some more ways to get involved:
Donate… give once, give monthly, give while you do your groceries or shopping, give by playing Shine’s lottery. Every donation helps!
Involve your community… are you part of a book club? A music group? Any kind of group can get involved in helping your Shine community.
Take on a challenge… if your goal was to get active this year, there's any number of runs, treks, swims we can offer you.
What about work? Do a bake sale at work or sign your team up to one of our virtual balloon races Or take on Go Yellow! (see page 8 for more info). There are lots of ways to get your colleagues involved.
Check out our website for some ideas or get in touch with our friendly fundraising team to sign up or find out more on fundraising@shinecharity.org.uk or 01733 555988. Visit www.shinecharity.org.uk/getinvolved
Awareness UPDATE
Hydrocephalus Awareness Week took place from 10th – 16th March 2025. We loved reading all of your stories and experiences in our #LivingWithHydrocephalus campaign so thank you for sharing these with us and our community!
We launched our Emergency Care Survey to collect the member insights that we need to shape the project and campaign to making emergency care safer and more effective for everyone affected by hydrocephalus. This has closed and we will be reviewing the results shortly.
Our resources are always available to share with those around you, friends, family, employers, colleagues and anyone else. Visit www.shinecharity.org.uk/hydrocephalushub Save the dates 2025!
NPH Awareness Week
19th- 25th May 2025
Read about NPH Awareness Week 2025 on page 2 of this issue
Go Yellow for Shine Friday 20th June 2025
Read about our Go Yellow campaign and how you can get involved on page 8
Spina Bifida Awareness Week
20th – 26th October 2025
Our annual campaign for all things Spina Bifida – look out in the coming months for how you can get involved
How can YOU get involved?
Whether you or someone you know or care for has spina bifida, hydrocephalus or a related condition, we would love for you to get involved and support Shine to increase awareness, celebrate individuals living with these conditions and raise vital funds so we can continue to provide free specialist support. Keep an eye on our socials media channels, website and on your emails to learn more!
