Shine 2024/5 Impact Report
Knowing we’re not alone –connecting with others going through the same things – that kind of support is priceless.”
Improving health and self-management
Living with rare, complex conditions can be overwhelming.
In 2024/25, Shine empowered 1,681 people to better understand their condition and 1,489 now manage their health more effectively.
I think it’s fair to say that the info and support SHINE provided to me helped me to realise I had Normal Pressure Hydrocephalus in combination with Hydrocephalus and work this through with the Neurosurgeon, so I had the surgery at hopefully an early enough stage for it to make a difference in treating the symptoms.”
Shine gives me a sense of belonging, they are a charity that understands all we go through…”
Every day, Shine supports people living with spina bifida and hydrocephalus – conditions that affect the brain and spine for life. We stand alongside our 15,000+ members, and help them to live healthier, happier and more connected lives.
Reducing isolation and building community
Living with a rare condition can be isolating. Before joining Shine, many of our members have never met anyone else with the same diagnosis. The Shine Community is a place to connect, share experiences, and feel understood.
3,497 people told us they felt less alone thanks to Shine’s events and peer support networks.
It’s helpful because it’s a community. So few people live the way that I and other Shine members do. Having a place - a refuge - to speak about experiences or simply be, is comforting.”
Enhancing access to essential services
Spina bifida and hydrocephalus are rare and complex. Mainstream services often aren’t equipped to support people living with these conditions. Shine staff provide expert advocacy and casework and help our members secure vital support.
enabled…
1,632 people to access better care and support
365 to improve their financial situation
Thanks to our flagship partnership with the NHS, Shine staff also supported hundreds of families by attending over 175 clinics across England, Wales and Northern Ireland, offering wraparound care alongside clinical appointments.
133 to secure more accessible housing
We find Shine’s presence at our clinics immensely helpful. For parents, it’s part of holistic care. Whatever we can do medically is matched and more by what you can do to support the family.”
(Paediatric Urologist, Addenbrookes)
I always feel able to talk to Shine because you know me well. College do not understand how my health condition impacts everything, and you really understand so can see that bigger picture. It’s really helpful to me because it means I don’t have to worry about breaking everything down to try to make somebody understand. You just already do, so it means I get the help I need quicker.”
Driving national change
In addition to our frontline work, Shine supports national efforts to raise awareness, prevent neural tube defects, and ensure our members’ voices are heard.
After over 30 years of campaigning, Shine celebrated a major milestone: the UK’s introduction of mandatory folic acid fortification in flour – a move which will significantly reduce the number of babies born with neural tube defects.
This is a huge public health initiative, and we are so grateful to everyone who has played a part in getting this legislation over the line.
A government decision to introduce mandatory fortification will mean a major positive impact for the health and wellbeing of babies born in the future. In many cases, it will be the difference between life and death.”
Shine has been with us every step of the way on our daughter’s journey, even before she was born.
The support they’ve provided has been absolutely invaluable – helping us finally get seen by Neurosurgery through their work with the children’s hospital, and muchneeded check-ins and advice from their brilliant Health Team.
Their website has been a goldmine of information, and the WhatsApp groups and event meet-ups have made the biggest difference.
We honestly don’t know where we would be today without Shine. THANK YOU so, so much to everyone at Shine Charity – you are changing lives every single day.”
