Shine is a UK charity focused on disability and health. 

Your philanthropy can help thousands of people living with the lifelong impact of spina bifida and hydrocephalus in the UK today. 

Why Support Shine through a Donor Advised Fund (DAF), Philanthropic Giving Scheme or Trust?

Shine is a UK‑registered disability and health charity (Charity No: 249338) suitable for support through Donor Advised Funds (DAFs), charitable trusts, foundations and private philanthropy. We work with DAF donors and advisers across the UK to deliver measurable impact for people living with spina bifida and hydrocephalus. As an established UK-registered charity with robust governance, donors can invest in Shine’s work with confidence.

Shine can provide due diligence materials, safeguarding policies, accounts, and tailored impact reporting to support DAF recommendations. We are eligible for Donor Advised Fund (DAF) Support and so we accept restricted and unrestricted donations via DAFs and can support anonymous philanthropic giving.

Shine is supported by national funders including BBC Children in Need, Hospital Saturday Fund and leading corporate and charitable partners:

Our charitable purpose

Shine exists to give people living with spina bifida and all forms of hydrocephalus the support they need. These are complex conditions of the brain and spine that cause lifelong physical and neurological disabilities.  Thanks to charitable funding, we offer people with these conditions free, lifelong membership and help them achieve better health, gain better access to services and grow strong support networks.

Spina bifida is a form of spinal injury and can cause weakness or total paralysis of the legs, incontinence and increased risk of accidental injury due to limited sensation. 

Hydrocephalus involves a build-up of fluid on the brain and causes headaches, epilepsy, visual impairment and complex learning disabilities.    

Normal Pressure Hydrocephalus primarily affects those aged over-60. It involves a build-up of fluid on the brain, despite the pressures inside the head often presenting as normal when tested. It can cause difficulty walking, cognitive impairment/dementia, and urinary incontinence.

Without the right support in place, these conditions can significantly impair a person’s ability to enjoy an independent and fulfilling life.

Our demonstrable impact and measurable outcomes

We know you may want to fund a certain aspect of our work, work with a particular age group, or to make an impact in a particular town, city, county or region important to you.

We offer national, regional, or project-driven funding options and can work with you to fund Shine's work that best aligns with your aims. 

Our evidence‑based approach and proven effectiveness

Our work is evidence-based and outcome-driven. Our beneficiaries inform all we do and our team draws upon 60+ years of experience and expertise to deliver the help people need, where they are, when they need us most.

The tangible difference we make

Below, you’ll find impact themes, aligned with a core area of Shine’s work, improving outcomes for disabled people and those with complex neurological conditions their families, so you can consider the type of difference you most want to make for people living with spina bifida or hydrocephalus.

Read more about Shine's Impact 

What You Can Do With Shine

Fund Disability Helpline Support for People in the UK

Help Thousands to Access Expert Advice When They Need It Most

Your philanthropy can help ensure no one faces the complexities of spina bifida or hydrocephalus alone. Supporting our Helpline is one of the most powerful ways to make a real, day-to-day difference to peoples’ lives with Shine. Around 1,000 calls and contacts come into Shine’s Helpline every month. Every year, we support around 5,000 people through our Helpline and through follow-up casework:

·        Preventing the escalation of health issues

·        Supporting self‑management of complex symptoms

·        Improving wellbeing through direct support

·        Building independence through tailored information

·        Bridging the gap between what statutory services are able to offer and real, human need

Each call, including triage, follow-up work and specialist referral, costs approx. £60-£65 to resolve. The service costs around £1 million a year for Shine to run. Your gift can fund access to immediate expert advice, and ensure that schools, hospitals, employers and local authorities properly understand and respond to the needs of those with the complex and often chronic symptoms of spina bifida and hydrocephalus.

Your funding will help thousands of people living with these conditions to secure better care, essential benefits, education adjustments, housing solutions, and critical health guidance.

Fund Shine’s Hospital Clinic-Based Services

Give Families Support around their NHS Hospital Appointments

For funders who want to enhance NHS care and improve families’ experiences, supporting our hospital-based work creates tangible, immediate impact.

At spina bifida and hydrocephalus clinics across the UK, Shine staff reduce pressure on the NHS by allowing clinicians to focus on clinical care. Shine’s work compliments statutory health services by addressing the emotional and practical considerations the families of disabled children face beyond their medical needs.

• It costs around £390 for a Shine Support Worker to attend a clinic session
• Shine attends around 200 clinic days annually
• Through these sessions, we reach over 700 families of children with disabilities and complex symptoms caused by spina bifida and hydrocephalus, many of whom would never otherwise find their way to our services

Your funding can give anxious parents a knowledgeable advocate before and after their appointments, help children understand their conditions, and provide relief for NHS teams by removing additional administrative strain.

Fund Shine’s Specialist Education Service

Level the Playing Field for Children at School

If your philanthropic priorities include children’s rights, inclusion or education inequality, your support here will directly transform children’s life chances through removing barriers to education for disabled children and children in need of SEND support.

Every year Shine provides specialist, personalised educational support for 500–600 children, ensuring they receive the adjustments they need to learn, thrive and reach their academic potential.

• A typical intervention costs £200–£300. Through Shine, this is free to families of children with disabilities and symptoms caused by spina bifida and hydrocephalus.

We also train schools and teachers so that children’s cognitive, physical and sensory needs are properly understood and supported.

Your funding can help equip schools with training and knowledge for SEND inclusion and support families navigating SEND systems, laying the foundations for more independent futures for children growing up with spina bifida and hydrocephalus today.

Fund Shine’s Paediatric Continence Service

Teach Children to Manage Continence with Confidence and Dignity

This is one of Shine’s most sought‑after services and one of the most under‑served areas of healthcare in the UK.

Continence issues affect many children with spina bifida. Without support, they can face shame, social exclusion, missed schooling and long‑term health complications.

• Shine supports around 300 children a year with personalised continence care.
• Delivering this service costs £55,000 a year (under £200 per child for life‑changing support).

Your funding will help children understand their bodies, manage their continence safely, and participate fully in school, friendships and play. Recent national campaigns have highlighted the serious lack of continence services, meaning your investment fills a critical gap in UK health provision.

Fund Shine’s Patient Information Service and Sector-Leading Educational Resources for Professionals

Equip Families, Clinicians, Teachers and Employers with Specialist Knowledge

If you care about empowering people through accurate, evidence-based information, this is an exceptionally high‑impact area to support.

Shine produces a wide range of resources that are niche to the general public but absolutely essential for our community - from guides on adulthood with spina bifida to hydrocephalus resources for new parents, to our widely used Shunt Alert Cards, which help keep people safe in emergencies.

All resources are provided free of charge to Shine’s beneficiaries, ensuring no one is excluded.

• Shine distributes over 500 shunt alert cards a year to children and adults with hydrocephalus
• Delivering our information service costs approx. £112,940 a year and demand for our services continues to rise

By funding the development, printing and distribution of our resources, you will place vital, specialist knowledge into the hands of thousands of people who need it to live safely and well.

Fund Shine’s Public Health Awareness & Prevention Work

Prevent Future Cases of Neural Tube Defects

If your philanthropic focus includes prevention, maternal health or public health messaging, you can help us reach more people with life‑changing information about folic acid and pregnancy planning.

Your support will help Shine:

• Deliver public health awareness and nutrition‑led prevention campaigns
• Engage communities that may be disproportionately impacted, particularly those who may have been previously labelled ‘hard to reach’
• Provide accurate, evidence-based and accessible folic acid information
• Help Shine continue to bring our unmatched expertise to national prevention efforts

By funding our prevention and awareness work, you will play a part in preventing neural tube defects, so fewer babies are born with preventable health issues. With your funding, we can build greater public awareness of simple, proactive health steps.

Fund National Change Through Research and Policy Influence

Support Shine’s Research & Campaigning Work

If you are passionate about systemic change, evidence‑based practice and shaping the future of care, supporting Shine’s research is a powerful investment.

Your funding helps us:

• Gather lived‑experience data from members
• Produce major studies (e.g., 1000 Voices, the world’s largest study on ageing with spina bifida)
• Improve clinical pathways
• Influence national policy
• Conduct upcoming research into emergency care for shunt failure and electrical stimulation therapy for children with spina bifida

Every research project requires philanthropic investment to fund staff time, analysis, and dissemination to clinicians and policymakers.  Your funding can help us to shape better policies, more responsive healthcare, and long-term systemic improvements for thousands of people.

Invest in the Future of UK Healthcare with a Transformational Gift

The NHS provides regular, proactive care for children with spina bifida and clinics, but from 18 years old onwards, adults with spina bifida and hydrocephalus face fragmented support, with many relying on emergency services when symptoms reach crisis point. 

A transformational gift would enable us to establish a network of multi-disciplinary clinics dedicated to proactive care for adults with spina bifida and hydrocephalus across the country.  This model already exists at Chelsea and Westminster Hospital, but its capacity and location cannot match the nationwide need for proactive, preventative healthcare and regular check ups. Clinics like this cannot exist without investment from funders who want to make a meaningful, long-term impact on UK-healthcare.

The chance to have regular, proactive check-ups with experts can transform the lives of people with spina bifida and hydrocephalus, maximise their independence and reduce the risk of health crises. This system would reduce the burden on the NHS.

With your investment, we can pull together the evidence base to prove the value of services like these and convene the right people to get this initiative off the ground.

Know what you want to fund? Contact: Laura Myatt, Trusts & Foundations Manager

Struggling to narrow it down? An unrestricted gift to Shine makes a difference because it gives us the flexibility to apply your funding wherever it is most needed.  Contact us to find out more.