The Society for Research into Hydrocephalus and Spina Bifida (SRHSB) was founded in 1956 by a group of physicians and surgeons interested in developing treatments for the conditions. At the time, spina bifida, a spinal condition which develops early in pregnancy resulting in various degrees of paralysis and disability, occurred in over 15 per 10,000 live births, making it one of the most common serious birth defects. In most cases it was accompanied by hydrocephalus – an accumulation of cerebrospinal fluid in the brain which can cause progressive brain damage leading to serious disability and death if left untreated.
Until the mid 1950s there was no effective treatment for hydrocephalus, with efforts to alleviate the effects of spina bifida proving frustrating.
However, an American engineer, John Holter, seeking a treatment for his son, Casey, who had hydrocephalus, experimented with valved devices and developed the Holter valve, a silicone valve which could be sterilized and mass produced.
The introduction of the Holter valve was a vital boost to research into the treatment of hydrocephalus and spina bifida, raising prospects of reducing the major life-limiting element of the conditions. Hydrocephalus was the life – limiting condition associated with spina bifida, and a practical treatment for hydrocephalus meant that active treatment for spinal, orthopaedic, bowel and urological problems of spina bifida was now worth considering. In recognition of his invention, John Holter was made a member and later Honorary Member of SRHSB. He went on to be awarded DSc by the University of Sheffield, UK and Hon CBE by the UK Government.
The Society was then founded by a small group of clinicians with Mr George MacNab, chief paediatric surgeon at Great Ormond Street Children’s Hospital, London as first President. From then on the Society grew rapidly into the high – profile international body that it is today, including both scientific and clinical communities. Scientific meetings are held annually. Though the Society is UK – based, over 20 meetings have been held in centres outside UK. Members are drawn for approximately 30 different countries.
Since the early days of the Society, John Holter was a member and friend, and his generous donation established the Casey Holter Memorial Essay Prize and Lectureship. Recent winning topics have included chiari malformation, basic research into causation of spina bifida, neuronal migration, tethered cord, intracranial pressure / volume relationships, social impact of childhood disablement and many more. This year the Casey Holter Lecturer was Professor Andy Copp of London whose topic was the developmental biology and genetics of neural tube defects, and the role of folate and inositol in their prevention.
The Society works with Spina Bifida Hydrocephalus Scotland and SHINE, the UK organisations for people with spina bifida and / or hydrocephalus, to promote adoption of best practice throughout. We are raising awareness of the importance of folic acid in the prevention of NTD’sThe Society works with Spina Bifida Hydrocephalus Scotland and SHINE, the UK organisations for people with spina bifida and / or hydrocephalus, to promote adoption of best practice throughout. We are raising awareness of the importance of folic acid in the prevention of NTD’s.
SRHSB Mission Statement:
To foster knowledge, understanding and research into prevention, treatment and management of hydrocephalus and spina bifida.
This society has always been inclusive of all aspects of clinical care and scientific research into CSF biology, hydrocephalus and neural tube defects including but not limited to:
- Innovations in clinical approaches to hydrocephalus and spina bifida (e.g. ETV-CPC, in utero surgery)
- Advocacy for hydrocephalus and spina bifida in the public domain
- Education and awareness of hydrocephalus and neural tube defects
- Clinical and basic research into hydrocephalus and spina bifida
- Facilitate collaborations for research into hydrocephalus and spina bifida
- Folate fortification advocacy and awareness including Government lobbying
- Linking healthcare professionals involved in the treatment and management of hydrocephalus and spina bifida.
- Sharing experiences from all aspects from underlying biology, clinical aspects, treatment, management and day to day living including, physiotherapy, occupational therapy.
- Giving a voice to people with these conditions to interact with scientists and clinicians