It has been almost a year since we issued our last copy of Together.
In that time, the teams have been so busy offering advice, support and guidance as well as working on key projects, resources and campaigns.
We are, as ever, grateful for all the fantastic fundraising that so many of you have been doing for us. Without you, we just couldn’t provide support and advice to the numbers of people we do.
As demand for our services grows and grows, we need your help now more than ever to continue to provide the best possible service to our members across England, Wales and Northern Ireland. One easy way is to get involved in ‘Go Yellow for Shine’ on 14th June, and encourage your families, friends, colleagues and anyone else you know to ‘Go Yellow’ too. More information on this, and other ways to fundraise are listed later in the magazine.
Once again, Together is packed with news, snippets of information and interesting articles, so grab a cuppa and enjoy the read and, as always, please don’t forget – we are here whenever you need us, and if we can’t help, we will find someone who can!
With my best wishes
It feels like now is the right time to find out more about what you want to hear about from us and how you want to receive information. We use many channels to deliver information, such as our website, online sessions, via email, social media etc. but we want to hear from you so we can better shape our communications plan for our members.
Please take part in our Communications Survey – the more feedback we have, the better we can provide what you want.
Take part now: www.surveymonkey.com/r/shinecommssurvey
The deadline is Monday 1st July 2024
With demand for our services and support at its highest level ever, we must carefully plan where our money is best spent so that we can make the most difference to you, our members and your families, no matter where you live –and one way to do this is to review how we send ‘Together’, which will help to reduce costs.
Many of you currently receive your magazine via email, see it on social media, as well as it being available to view on our website. However, there are still some who receive a hard copy in the post.
Over the course of the next couple of years, we hope to move almost entirely to be digital.
If you currently receive Together by post and want to continue receiving it by post in the future, please let us know by calling 01733 555988 or emailing firstcontact@shinecharity.org.uk.
Joining Shine online isn't just about finding support—it's about forging connections, gaining insights, and discovering new possibilities in welcoming and inclusive groups.
Our range of online groups is bridging connections across England, Wales, and Northern Ireland, catering to the diverse needs and interests of Shine members of all ages. Members come together to learn, share experiences, celebrate achievements, and provide support during setbacks. From condition-specific discussions to casual coffee and chats, bingo nights, arts and crafts, and book clubs, Shine's online gatherings offer a multitude of avenues for members to connect, learn, and grow, and have some fun and laughter!
Barriers such as transport or having to travel long distances are removed so anyone who wants to can benefit from the support and resources available within our virtual community.
We are sometimes asked about peer support programmes, and whether Shine offers members a befriending or mentoring service.
The short answer is that we don’t. However, when we get requests from members to talk to or have a connection with another Shine member with similar conditions, we are happy to arrange a mutual connection between the relevant members.
We will facilitate the initial connection only, and any further contact between both parties is independent of Shine (ie forming friendships via social media platforms / face to face meetings etc.)
Visit www.shinecharity.org.uk/events or contact us on 01733 555988 or email firstcontact@shinecharity.org.uk for more information
Training and educating professionals everywhere!
We’re excited to announce that Shine has launched Shine Academy!
This is an online service offering free training to our professional members. So far, we have launched e-learning modules on spina bifida, hydrocephalus, and SBO / closed dysraphisms. There is also a course on spina bifida especially for antenatal staff, to improve the experiences of parents-to-be from diagnosis until birth.
Shine recently added recordings of the excellent 2021 Professionals’ Conference and are about to add a new course on Normal Pressure Hydrocephalus (NPH), ready for NPH Awareness Week. All the courses are CPD accredited (important for professionals wanting to update their knowledge).
The current courses are aimed at healthcare professionals, but we plan future courses for school and care staff. Feedback so far has been excellent, so if you would like your healthcare professionals to know more about your conditions, encourage them to join Shine as Professional Members and benefit from free, CPD accredited training by sharing this link www.shinecharity.org.uk/professionals
The UK government announced in January 2024 that mandatory fortification of flour with folic acid will go ahead as planned with a 2-year implementation period, which means that fortification won’t come into being before 2026.
Nevertheless, we are yet another step closer to seeing this important health initiative become reality –which is fantastic news.
Normal Pressure Hydrocephalus (NPH) is different to the hydrocephalus experienced by many Shine members. It tends to develop mostly in older people, it tends to progress, and dementia can develop.
We have seen an increase in the number of people coming to us with a diagnosis of NPH. So, in response, we are developing our services to raise greater awareness and provide more support for our members living with NPH.
Shine is launching our first NPH Awareness Week from 13th – 20th May (this will be separate to our annual Hydrocephalus Awareness Week held annually in March). We will be hosting online events, posting on social media, launching new website information and a new NPH course for professionals.
Our NPH training course will be available free to Shine Professional Members and will be CPD-accredited. Do tell your healthcare professionals, such as your GP and nursing staff if you’d like them to know more
about NPH and they can sign up to become a Shine professional, and access the course here www.shinecharity.org.uk/professionals.
As we expand and improve NPH information on our website, we’d love to include your suggestions. Please email Gill.Yaz@shinecharity.org.uk with what you want to see or might have found useful when you were going through the process of diagnosis or shunt insertion. We already have some suggestions, including the ‘walking test’ and how a lumbar puncture is done.
Shine has a series of members’ stories, called Shine Voices. People often find it helpful to hear how others live their lives with their conditions.
We would love to hear and share your stories so do visit www.shinecharity.org.uk/voices for more information.
Shine’s ‘Touchpoints’ are offered at key stages in your child’s development and are designed to support you and your baby to promote activities for their development and address any concerns you may have. You may already be in contact with a community OT or Physio but our Touchpoints are designed to complement any NHS support you are receiving.
Touchpoints sessions are provided by our specialist Neuro Physiotherapist, Bronwen and our specialist Neuro Occupational Therapist (OT), Kathy, who have in-depth knowledge and experience of hydrocephalus and spina bifida, and are therefore well placed to offer information, guidance and support to both you and your child.
Whilst most people know about Physiotherapy and how this might help your child, fewer people are aware of the benefits of OT:
OTs support children to carry out activities they need, want, or are expected to do, but may have difficulty with due to impairments, injuries or developmental conditions. OTs can help children to become more independent with everyday activities such as mobility, seating and bathing by using problem solving skills and work closely with family members and other health professionals – including Shine’s Physiotherapist and the rest of our Health Team.
Shine will invite you to book a Touchpoint when your child reaches 3 months, 7 months, 12 months and 24 months, and will contact you by both email and WhatsApp. We will send a link to book directly into the therapists’ diaries, making it easy for you to book at a time that is convenient to you.
Booking using the link will create a Teams video call – if you prefer a phone call you can request this at the time of booking.
You can of choose to opt out of Touchpoints at any time by contacting us on 01733 555988 or at firstcontact@shinecharity.org.uk
…These touchpoints are absolutely vital for our children and really have the power to change the direction of their early years care through parental education and empowerment when community physios and OT often have little expertise with children with spina bifida…”
Our new series of confidential, online courses for our adult members
Using their extensive knowledge and insight into living with hydrocephalus and/or spina bifida, Shine’s Health team have recently launched two new series of weekly sessions focusing on ‘Pain Management’ and ‘Wellbeing’.
Shine on Pain is a six-week group on chronic pain and self-management strategies, providing participants with the opportunity to connect with other Shine members who experience long term pain, and to learn new strategies and how they might fit into your life.
‘Shine on Pain’ covers information about pacing and grading activities, explores movement and setting realistic goals when starting anything new, considers the importance of emotional wellbeing and good sleep, occupational therapy strategies and the benefit of community support.
Feedback from our first group has been so positive, with our members telling us that they have implemented strategies from the group into their day to day lives and are now feeling more in control of their pain.
‘I feel more confident about things now’
‘I feel more aware about the pain and the choices I have to manage this’
‘I would highly recommend this sort of course. It was such a relaxed and welcoming atmosphere’.
Shine on Wellbeing is a four-week course. It offers empowering sessions to focus on enhancing mental wellbeing and explore new strategies to better manage mental wellbeing and incorporate these into your daily life. It also covers healthy habits, builds emotional resilience, movement, nutrition, and relaxation. as well as community support both inside and outside of Shine.
The sessions facilitate open and honest conversations between members about their current feelings and allow our members to test new strategies between sessions and report back on successes and challenges the following week.
What our members are saying about Shine on Wellbeing:
‘We were able to laugh and feel comfortable to speak and be honest’
‘It was helpful to be able to reframe negative thoughts’
‘It allowed me to admit things to myself and to be able to think about how to change – it was very powerful’
‘It has given us some building blocks to explore on our own’
We are planning to run these sessions again. If you would like to discuss this with the Health Team to see if this might be right for you, please get in touch at firstcontact@shinecharity.org.uk or on 01733 555988.
We're excited to share the highlights of a fantastic event that unfolded on the 2nd November in Lichfield, Stafford. This gathering brought together nine teenage members of Shine, along with their siblings and parents, for a day filled with fun, games, and the joy of making new friends.
Beyond the competitive spirit of the games, this event was about forging connections. Friendships
blossomed among our teenage members, with phone numbers eagerly exchanged to ensure that these newfound friendships continue to grow beyond the event. It was a heartwarming reminder that the Shine Youth Club isn't just a club; it's a community where bonds are formed, and shared experiences are cherished.
We're looking forward to seeing our Shine community grow and thrive as we continue to organise more events across the countries.
Please contact Maddie, Shine’s Youth Voice and Engagement Officer on Madison.Powell@shinecharity.org.uk to find out more
Shine's Northern Ireland and Wales Youth Group recently clinched the top spot in the national poetry competition at the TES SEND Show. This remarkable achievement is a testament to the power of collaboration and the profound impact of shining a light on unique perspectives and shared experiences.
Famous poet Michael Rosen read their poem and declared our Youth Group the winners! The poem will soon be published in a booklet, allowing schools across the UK to read it.
Shine youth member, Carys, attended the awards ceremony in London to represent the group, and Emma, Grainne, and Codie showcased the poem at our Northern Ireland Shine Conference.
Codie said “I was nervous reading the poem out, but it was amazing to hear that we had won the competition and that my voice is being heard”.
I wish I was in school right now,
Because any place is better than here.
I’ve missed the drama and the school trip, Lying in bed in pain and fear
I’m falling behind in history
I’m scared I won’t pass my test
How I’ll catch up is a mystery,
But for now, I just need to rest.
My friend has got a new crush,
They didn’t think to tell me.
I didn’t realise I missed this much,
While I recover from surgery.
Beep, Beep, Beep...
…I so wish I could sleep.
My mum and dad, they aren’t so bad.
They know what to say, When I’m feeling this sad.
I've met some friends at Shine, They have the same health condition as me, They understand, I don't need to explain, They help me to be me!
I’m creative and independent
I’m really good at art,
My laugh is infectious, And I have a kind heart.
I’m strong and I’m confident, Even better than before.
I have my head held high,
Walking back through the school door.
Ping, ping, ping, My friends are texting again…
We are celebrating establishment of a dynamic Youth Panel aimed at amplifying the voices of young members of Shine. This presents a unique opportunity to actively contribute to youth-centric initiatives and shape the future for their age group.
“… Hi, my name is Maya. I am 12 years old. I have been an independent wheelchair user since I was three…”
Maya joined Shine just 7 weeks after she was born. Since then, she has grown into a determined, independent, and ambitious young person.
We caught up with Maya after the Young Person’s Wheelchair Forum for Peterborough and Cambridgeshire, where she told those providing the services why having the right wheelchair(s) is SO important and why the one she has currently is such a hindrance to her life.
Here’s what Maya said:
"Hi, my name is Maya. I am 12 years old. I have been an independent wheelchair user since I was three.
My current wheelchair from wheelchair services isn’t right because:
My chair tips when I get in It makes me less able to do things
I need to go really slow on curbs or I will tip out The seat hurts
I get tired quickly because it is so heavy
I tip if I go too quickly, my chair tips forwards or sideways and I fall out
My mum and dad have had to buy all my wheelchairs because wheelchair services always let me down. I used to be able to go on days out, play with friends and enjoy being independent like my brother and friends. Now I am older and can do far less.
I need help with most things. I have lost confidence and skills due to my unsuitable chair. I am in pain most days because of my chair, and I have to go in my bed until I feel better. I used to love dance. I used to love walking my dog. I used to love wheelchair racing. I am here today to have my voice heard. Things need to change, not just for me but for all children who need a wheelchair.
There needs to be better services and better provision that supports all our needs so we can fulfil our dreams and become who we are supposed to be. Thank you for listening"
Shine says ‘It is so important for young people like Maya to feel empowered and confident enough to advocate for themselves and others. Services are just not meeting needs of disabled people across the UK, but with individuals like Maya speaking out, things will change’.
Your Mum, Dad and Nan must be very proud of you, Maya!
Recently, Chris Greenhalgh, a Shine staff member with spina bifida and a wheelchair user, participated in a ski trip sponsored by Bullen Healthcare, in partnership with Freerider Sports Events. This experience allowed Chris and other wheelchair users to confront their fears and get to grips with the slopes of Italy.
Bullen Healthcare, who Shine partner with to provide our Shine Health Direct service, has long been committed to empowering individuals to lead fulfilling lives. By teaming up with Freerider Sports Events, Bullen has brought to life an adaptive ski trip that introduces participants to the incredible world of skiing. “Knowing that we had experts in adaptive skiing guiding us made the prospect less daunting,” said Chris. Situated in the landscapes of Northern Italy, this initiative was an eyeopening discovery into the possibilities of wheelchair skiing.
As many of you will know, travelling as a disabled person brings its unique set of challenges and considerations. Embarking on a ski trip to Folgaria, Chris and the nine other participants set off from various airports around the UK. The airport experience was good with staff on hand to facilitate a smooth transition through the airport.
Air travel can often feel daunting for wheelchair users but by planning ahead and clear communication with the airlines the journey from the UK to the Italian slopes was smooth. Chris commented, “The airport staff were incredibly accommodating, making the transition through security and to my gate stress-free.” Chris
was fortunate enough to be travelling with a wheelchair designed to stow away in the plane’s overhead lockers, easing his travel worries. “Having a wheelchair that fits in overhead storage is a game-changer for air travel; I felt much more relaxed knowing it was near me”.
For those curious about Chris’s fold up and lightweight wheelchair, more details are available from www.rgkwheelchairs.com/wheelchairs/dailywheelchairs/tiga-fx.html.
Upon arrival in Italy, the transition from the airport to the resort was seamless, thanks to pre-arranged transportation laid on by Freerider Sports Events. Chris noted “The pre-arranged transportation and onhand assistance made the journey from the airport to Folgaria really comfortable". The warm reception at Folgaria set the tone for the days ahead, with the group settling into their hotel.
Folgaria's resort proved to be very accessible. The hotel and ski facilities were equipped to cater to the needs of wheelchair users, one of the advantages of travelling on a specialised and organised trip meant that every consideration had been given to ensuring that mobility was not a barrier to participation.
From accessible rooms and amenities to qualified nurses available on site, as well as supportive and understanding staff, every detail was accounted for.
Adaptive skiing equipment and individual skiinstructors were available and on hand throughout all the time on the slopes. Chris was taught how to navigate both a sit-ski and the ski-lift by experienced and supportive instructors.
The tailored support and understanding provided by Bullen Healthcare and Freerider Sports Events ensured a seamless experience, allowing Chris and the group to focus on the joy of skiing. "Travelling with an organisation that specialises in disabled travel removed many of the barriers and uncertainties that can come with such adventures," Chris shared, underlining the considerable benefits of specialised travel. By travelling with a company that had considered the needs of wheelchair users made the trip far less stressful than previous travel experiences.
When reflecting on the trip and offering advice to others Chris had two clear messages to offer other disabled travellers considering the slopes - resilience and openmindedness.
Adaptive skiing, much like navigating life with a disability, presented its set of challenges. Each time Chris fell, he had to muster the strength to get back up – a process that, while frustrating, reinforced the importance of a resilient mindset.
The trip also reinforced the value of open-mindedness. Undertaking an activity that many would deem risky or unattainable for someone in a wheelchair, Chris and the group broke through significant societal and personal barriers. Things did not always go to plan, so the ability to “go with the flow” and not get too hung up on sticking to routines enjoyed at home made for a successful and happy travel experience.
Chris’s key takeaways to make the most of an adventurous trip like this are:
Preparation: Chris highlighted the importance of considering and understanding your own needs thoroughly, and just as important - communicating those needs with the people who can help you.
Flexibility: Chris stressed how flexibility and the willingness to adapt to imperfect situations is vital, viewing them as part of the adventure rather than as setbacks. Be willing to step out of your comfort zone whilst being open, and okay that things might not turn out as you expect them to.
Chris’s reflections on the trip shed light on the broader significance of such experiences, “The last week was an experience that surpassed any expectation I had... At 40, I didn’t think I’d try new things again, and this week opened my eyes to more possibilities yet again, and I couldn’t be more grateful to everyone involved for the opportunity.”
Chris’s adventure to the Italian Alps, alongside Bullen Healthcare and Freerider Sports Events, showcases a story of resilience and new adventures, and highlights something that is available to anyone navigating the complexities of life with a disability, if skiing is indeed something you wish to try.
Applications for next year’s sponsored trip happening in January 2025 are now open! Learn more and apply here: https://www.bullens.com/skitrip
Please note: The selection process for the trip is undertaken by Bullen Healthcare against a pre-agreed set of selection criteria.
For more tips and guidance on planning your holiday, including accessible travel considerations, please visit Going on Holiday - a guide if you have spina bifida and/or hydrocephalus.
www.shinecharity.org.uk/getting-outand-about/going-on-holiday
Travelling when you have spina bifida or hydrocephalus can raise some worries about your journey and your health while you are away. You might need a little more preparation, but for most people it will be possible to travel and have a holiday you enjoy!
Tryb4uFly with Queen Elizabeth’s Foundation for Disabled People
Queen Elizabeth’s Foundation for Disabled People (QEF) is a national charity who work with children and adults with physical and learning difficulties.
QEF acknowledge that flying can be a daunting process for disabled people and their ‘Tryb4uFly’ service aims to reduce this uncertainty and enable people to fly more confidently.
QEF have a range of free resources including video guides for powered wheelchair users or people with hidden disabilities. They also have a checklist to help plan your journey.
With centres in Leeds and south London, QEF offer assessments with a qualified health professional who uses air fuselage to recreate the cabin environment, allowing for a realistic assessment of your mobility, transfer and seating needs. The appointment lasts around 45 minutes. They can then make recommendations regarding any equipment needs and will provide a report with details for you to make your own decisions.
QEF give the option to hire a range of equipment for your flight to make your journey more comfortable, which can be cost effective than buying your own. This equipment can be couriered within the UK a few days either side of your flights.
To book an appointment call QEF on 020 8770 1151 or email mobility@qef.org.uk or visit here for more information
Navigating the airport and plane is one part of travelling with confidence, another way of travelling with confidence is to ensure you have all the up to date information about your condition.
You might want to ask your hospital for a copy of your most recent scan on a USB memory stick so if you need a scan on holiday, they can compare it to your last one. It can also be helpful to identify where your closest Neurosurgical centre is by searching on the internet.
Get any prescriptions you need ahead of time, with
spares in case of delay or misplacing these and a copy of your prescription, in case you need to show why you are travelling with certain medicines.
Ensuring your Shine Hospital Passport is up-to-date can be helpful when travelling in the UK or abroad. You can access it here:
www.shinecharity.org.uk/passports
It is important to ensure that you have appropriate travel insurance, with accurate information about any consultants you see and how often you attend appointments. You should ensure your policy covers you for all the activities you plan to do on holiday –things like winter sports are often not included. Small errors or leaving things out can be costly if you need to make a claim.
The Global Health Insurance card (GHIC) replaces the European Health Insurance Card (EHIC) now the UK has left the EU.
When your EHIC expires, you can get a GHIC from the NHS website here
Magnetic security wands have been reported to reset certain programmable valves, although this is very uncommon. Let the airport security staff know that you need to follow the same precautions as people with heart pacemakers and take your Shunt Alert Card with you. The whole body scanners, which use X-Rays or millimeter Waves, should have no effect on your shunt.
www.shinecharity.org.uk/shuntalertcard
Remember to keep hydrated while you are away –bottled water is best if you are abroad and to check your skin – a change in routine and temperature can mean you are at risk of sores or cuts.
See our page about footcare for more advice www.shinecharity.org.uk/ practical-advice/foot-care-advice
Most of all enjoy your holiday!
Sophie was born with a dimple and strawberry mark on her sacrum. Her parents were told it was fine but at about 3 months old she had an ultrasound scan of her spine. Unfortunately, the scan couldn’t see the spinal cord, so she was told she needed an MRI. That MRI never took place.
At age 10, Sophie started experiencing urinary incontinence. She was sent for an MRI scan of her back, and it showed she had a tethered spinal cord. She had surgery which went well but within a couple of months she started having severe pain in her back and legs and the incontinence continued.
Within 12 months, she also developed sporadic loss of sensation in her legs and episodes of not being able to walk. Sophie was only 12 and became very withdrawn because of her symptoms. She needed a wheelchair for when her legs weren’t working properly.
Sophie’s parents approached Shine’s legal service
because they felt her tethered cord should have been diagnosed when she was a baby.
The solicitor investigated a claim for the delay in diagnosis of a tethered cord and the hospital admitted that they should have performed an MRI and diagnosis would have been made by the time she was 6 months old, and she would have had surgery by age 3 at the latest.
Five years later a settlement was reached, and Sophie received a seven-figure sum in compensation for treatment, care and accommodation that would enable her to use a wheelchair in her own home.
For further information and to contact Shine’s Legal Service visit www.shinecharity.org.uk/legal
Health Direct a dedicated home delivery service that provides Shine members with all of their urology and stoma products and prescription medication, efficiently and discreetly to their door or to a place that is convenient for them.
We have worked hard to develop this innovative service so that it will benefit Shine members. Registering with Shine Health Direct is a breeze. Just tell us what you need, and we handle the rest – even liaising with your GP! Your dedicated personal advisor will reach out to you on a pre-arranged date, ensuring a seamless ordering process for your products and medication. Sit back and relax as your essentials are swiftly delivered to your doorstep by a local driver or courier – discreetly and without hassle.
Shine has had almost 1,000 new members in the past 12 months. Some of this growth can be attributed to the lack of access to the right public services at the right time and so people, quite rightly, are turning to
The statistics shared on the back page show how many individual members we have supported over the past 12 months. What the figures don’t do is show the work that goes on behind the scenes in lobbying and campaigning for improvements to statutory services, which are so disjointed no matter where you live. Shine members deserve better!
Two words that none of us want to hear …but something we all need to know about as several Shine members with spina bifida have been diagnosed with bladder cancer. We have information on the website for members www.shinecharity.org.uk/bladdercancer and for your GP, but we need to do more.
In the general population, bladder cancer mainly occurs in people over 60, so GPs may not suspect it in much younger adults with spina bifida.
The symptoms are often vague. Pelvic pain, blood in the urine, difficulty passing your catheter or recurrent urine infections could all point to bladder cancer. Without the correct information GPs may overlook the symptoms, viewing them as ‘part of life with spina bifida’.
Some studies looking at bladder cancer in people
Shine is a member of several high-profile campaign groups, including:
The Care and Support Alliance; Disability Benefits Consortium; Carer Poverty Coalition; Wales Neurological Alliance and Northern Ireland Children’s Partnership), We also respond to Government consultations, all of which gives us an opportunity to add your voice to highlight the needs of our members, and call for change at a national, regional and / or local levels.
with spina bifida or spinal cord injury suggest recurrent urinary tract infections (UTI) could be a factor in the development of bladder cancer. Having a bladder augmentation (clam cystoplasty) may also carry a small risk of developing cancer.
Collecting as much information, from as many of you, as we can, will help us plan our campaign to increase awareness and develop information for GPs to alert them to the symptoms, so that investigation and treatment can be started at the earliest opportunity.
Look out for our survey, which we’ll email to all our adult members with spina bifida early this Summer.
We are also working with other charities and networks:
“This is serious SH1T”, led by the Spinal Injuries Association, aims to ‘stop harmful neglect of those being denied essential bowel care in medical settings’. Find out more https://spinal. co.uk/campaigns/our-campaigns/this-isserioussh1t
The Leeds University-led project to develop a toolkit to prevent pressure ulcers at home. Find out more https://ctru.leeds.ac.uk/pupstudy
Spina Bifida Awareness Week ............................ 14th – 20th October 2024
World Spina Bifida & Hydrocephalus Day .................... 25th October 2024
Hydrocephalus Awareness Week ......................... 10th – 16th March 2025
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Whether you wear something yellow, bake yellow cupcakes, sow sunflower seeds or sell lemonade - whatever you do, just GO YELLOW.
By going yellow with your school, workplace, friends or family, you’ll be helping increase awareness of spina bifida and hydrocephalus and raising vital funds so that Shine can continue to provide specialist advice and support services to those affected by the conditions.
More details can be found at www.shinecharity.org.uk/goyellow
Join #TeamShine on Saturday, June 15th 2024 and take on this iconic bucket list challenge of climbing the three highest Yorkshire peaks of Pen-y-Ghent, Whernside and Ingleborough in the beautiful Yorkshire Dales National Park.
Click or scan this code to find out more and to sign up now!
The aim is to complete the challenge in 12 hours, taking in over 5,000ft of ascent and descent over roughly 24 miles.
As you walk along, you'll enjoy incredible sights as you take in the stunning Yorkshire Dales and Pennines scenery. You can expect to see some amazing panoramic views from the summits over the Dales and on a clear day even as far away as Morecambe Bay, the Lake District and more!
You'll join other Shine walkers on this trek and be supported by qualified, first aid trained mountain leaders and marshals provided by our partner OverLimits.
If you’re looking for something a little bit easier? Why not try our Yorkshire One Peak Challenge taking you on a circular trek up Pen-y-ghent? Find out more here
THANK YOU!…and Good Luck!
Lots of luck to everyone who is taking on a new challenge for Shine - from bike rides and climbs to coastal walks and marathons. We can’t wait to share your successes! We want to say a HUGE thank you to everyone who ran, swam, walked, trekked and were generally active for Shine over the past year!
Join #TeamShine at Parallel Windsor - UK's national celebration of disability, inclusion and wellbeing on Sunday 7th July. Walk, push, wheel or run. Sign up today! https://bit.ly/ParallelWindsor4Shine
In the past few months, so many people have been fundraising for Shine. Unfortunately, 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! If you’d like to Get Involved with supporting Shine, take a look at our website or contact one of the team by emailing fundraising@shinecharity.org.uk or calling 01733 555988.
Griffin Cycling Club 20 members, completed cycling challenge
£15,500
Irene and Daughter Selling Christmas crafts Conor Handel Sponsored hand cycle challenge
Will Dougal Wobbly Weavers 5 friends in Norfolk organised their own sponsored walk
James Quick Took part in three marathons. His daughter Daisy has Hydrocephalus
Quick Taking part in Brighton Marathon this year and ran the Great Birmingham Run 2022 and 2023
Shine offers babies, children, teenagers and adults living with hydrocephalus and spina bifida, and their families, support, advice and opportunities to connect with others to share experiences and create friendships across our growing community.
Members with Hydrocephalus
,410
Number of adults 4,913
Members with Spina Bifida and Hydrocephalus
Number of 0-12s 748
Number of 13-17s 203
Number of 0-12s 678
Number of members with related conditions Number of
Number of adults 1,984
Number of 13-17s 179 Members with Spina Bifida / Spina Bifida Occulta
Number of
Number of members with Normal Pressure Hydrocephalus
559
In 2023/24, Shine provided direct, 1-2-1 advice and support to 4,506 individuals and families in total
58 prospective new parents
1,379 Shine Little stars (0 – 12 year olds)
366 teenagers (13 – 17 year olds)
2,289 adult members
207 Parent / carers
243 others (siblings and other family members, volunteers, professionals)
539
The most requested support was on health and well-being, lifestyle, finances and education.
Shine - with you from before birth and throughout the whole of your lives
Go to www.shinecharity.org.uk/jointoday or call 01733 555988 to join us!
