Tom Bull (our Head of Finance at HSF health plan) and I recently visited Spina Bifida Hydrocephalus Ireland (SBHI) to present a cheque for €13,500. This grant was to go towards one of their Applied Knowledge projects which is specifically oriented around developing a spina bifida hydrocephalus information app.
The conditions at hand:
Spina bifida is a condition affecting one in every 1000 children born each year in Ireland, being one of the highest rates in the world. Spina bifida is the most common neural tube defect (NTD), and is known for causing incomplete development of the spinal cord in the womb. The result of this is split vertebrae and a spinal cord and its coverings often protruding through a sack-like bulge on the back.
The results of these defects often lead to a life full of urological issues that impact the functioning of the kidney and bladder, and in some cases hydrocephalus also occurs. Hydrocephalus is a condition where there is too much cerebrospinal fluid in the brain, resulting in an enlarged head and pressure. Long term implications of this include learning disabilities, impaired speech, memory problems, vision problems and many more.
In 1968, a group of parents who had children with spina bifida and/or hydrocephalus came together to establish a voluntary organisation with the aim of highlighting awareness and providing support to families, individuals and carers affected by the condition. These efforts resulted in the formation of The Irish Association for Spina Bifida and Hydrocephalus (IASBAH), now known as Spina Bifida Hydrocephalus Ireland (SBHI).
The charity still practices in the traditional way paved by its original founders, particularly with respect to its members who remain the organisation’s most significant strength. Together they aim to foster an environment in which people with spina bifida and hydrocephalus can lead a fulfilling life through providing essential information, support and advice. Through providing these resources, as well as lobbying the government to improve its services, the overarching goal of the organisation is to work towards building a socially inclusive and equal society for those living with the condition.
The Hospital Saturday Fund is proud to be a supporter of SBHI, and is excited to see what the future holds for them and their mission towards enhancing the lives of those impacted by spina bifida and hydrocephalus.