Race Archive

Anencephaly is the most severe of a group of conditions known as Neural Tube Defects (NTDs). It happens in about 1 in 2,000 pregnancies in the UK and occurs during the first 28 days of pregnancy when an unborn baby’s brain does not form properly in the womb. Diagnosed by ultrasound at the dating scan, anencephaly is sadly always fatal.

Our aim is to engage, empower and enable all our members to have better lives by helping them to share with others their personal experiences of life with spina bifida.  

Shine provides specialist advice and information to professionals working in healthcare and education. We aim to deepen understanding of spina bifida and hydrocephalus to provide the best possible outcome for our members. 

Shine’s Health Development Team are vital to our approach to supporting our members. 

‘Go Yellow’ for Shine to increase awareness and raise vital funds to support the Hydrocephalus and Spina Bifida communities.  

Shine supports thousands of adults living with spina bifida and/or hydrocephalus, across England, Wales and Northern Ireland.

Folic acid supplementation is proven to reduce the chances of neural tube defects by up to 70%. Shine’s Folic for Life programme focuses on raising awareness of the benefits of introducing and encouraging the habitual supplementation of folic acid into daily routines.  
 

Hydrocephalus, a build-up of fluid on the brain, can develop at any time in anyone’s life. It can have a range of physical and cognitive effects, including issues with reasoning, short-term memory, language, visual problems and early puberty in children.  

Shine’s work with teens focuses on promoting understanding that looking after themselves can help to prevent life-threatening health complications as they get older.    

Parents and carers of babies, children and adults with spina bifida and/or hydrocephalus and associated conditions hold a vital role in the lives of our members.