About us

Spina Bifida Hydrocephalus Ireland

Some Words About Us

In 1968, a small group of parents whose children had spina bifida and/or hydrocephalus established a voluntary organisation which would highlight awareness of these two conditions and support families, individuals and carers who were affected. Their determination and dedication resulted in the establishment of the Irish Association for spina bifida and hydrocephalus (IASBAH).

These parents were pioneers who laid the foundations for what is now a nationally recognised organisation. Their optimistic spirit encouraged them to affect real change with and for people who had the conditions, their families and carers. In April 2008, the National Association of Spina Bifida Hydrocephalus Ireland Ltd was formed and now trades as Spina Bifida Hydrocephalus Ireland (SBHI).


Spina Bifida Hydrocephalus Ireland continues its tradition as a voluntary organisation, with an elected Board of Directors made up of voluntary members and parents in addition to Branches in some areas which are run by groups of local volunteers. The association has thousands of members nationwide consisting of those with spina bifida and/or hydrocephalus, their parents, siblings, family, friends and carers. Our members have a wealth of knowledge and experience which is invaluable to the association and its future development.

Development and Network

  • Building upon the strong base of being a volunteer-led organisation for 40 years, SBHI became a registered company in 2008 and this opened the door to professionalise the association and gain access to Service Arrangements from the HSE. This means that today we have a staff consisting of a CEO, Operations Manager, Fundraising and Communications Officers, a Family Support Team, a Respite and Recreation Team, Admin Team, an Education and Training Manager (employed under the SSNO from Pobal), a newly appointed Advocacy and Campaigns Officer, and a Resource Centre Team in Clonshaugh, Co. Dublin. SBHI is a member of the International Federation for Spina Bifida and Hydrocephalus (IFSBH), the Disability Federation of Ireland (DFI), The Wheel, Charities Institute of Ireland (Cii), the Neurological Alliance of Ireland (NAI), and the Carers Alliance.

Do something great… FUNDRAISE!

Enhance the lives of over 2,000 people who need vital support.

How can you get involved?

The work of SBHI is only possible with your support.

We place immense value on the volunteers we have, and on the number of people who work tirelessly to raise awareness of spina bifida and hydrocephalus across Ireland.

We also appreciate the energy, commitment, and motivation of our wonderful fundraisers. Each year we need to raise over €300,000 from fundraising activities - this includes everything from church gate collections, to coffee mornings and bake sales; from those who run, bike, abseil, and parachute jump, to schools and businesses hosting events in our name, and everything else between.

How SBHI is structured


Tom Scott - CEO SBHI

Welcome to SBHI, we are delighted that you are visiting our website. If you are here for support, we will work to meet your need in anyway we can. If you are here to support us, we look forward to seeing what you can achieve with SBHI as a volunteer, fundraiser, or donor.

SBHI Board of Directors

Peter Landy


[email protected]

John Henry


[email protected]

Una Keightley


[email protected]

Gerry Bell


Ronan O'Neill


Financial Report

The National Association for spina bifida and hydrocephalus Ireland CLG, trading as Spina Bifida Hydrocephalus Ireland, is fully compliant with the Statement of Recommended Practice (SORP) and the company accounts are fully audited annually. To access the financial statements of the company, please select from the options below:

See financial report

SBHI Branches

Your local support network

  • Dublin
  • Kildare
  • Louth/Meath
  • Wexford
  • Mayo/Leitrim/Roscommon
  • Donegal
  • Tipperary

SBHI Dublin Branch

The SBHI Dublin Branch is run by volunteers who are members or parents/carers to a relative living with SB/H. We work hard to provide the following for all our members and their families:

  • Respite events
  • Transport
  • Social gatherings for adults and childre
  • Exceptional needs funding
  • AGM Funding

We rely solely on fundraising to continue supporting all our members and their families.

If you have any queries about our events, if you would like to volunteer with the Branch or support our fundraising efforts, please contact:

Chairperson: Anthony Keogh Mobile: 089 601 8998 Email: [email protected]

Administrator: Diane O’Keane Mobile: 087 343 7398 Email: [email protected]

Committee Members:

  • Chairperson - Anthony Keogh
  • Treasurer - Joanne Savage
  • Members Dev Co-ordinator - Sean 0'Kelly

Support Committee:

  • Megan McGuckin
  • Louise Larkin
  • Jennifer Fay
  • Stephen Morrison
  • Angela Doran Gorman

SBHI Kildare Branch

  • Chairperson - Ms Breda Bell
  • Secretary - Mrs Caitríona Doyle
  • Treasurer - Mrs Amanda Reeves
  • Vice Chairperson - Mrs Úna Keightley
  • Branch Email: [email protected]

    Branch Website:

    SBHI Louth Meath Branch

  • Chairperson - Mr Gareth Fitzpatrick
  • Secretary - Denise O’Hehir
  • Vice Chairperson - Mr Gerald Malone
  • Membership Development Officer - Ms Mairead Meehan
  • The SBHI Louth/Meath Branch hold regular meetings (usually in Drogheda) where we discuss relevant issues in an informal atmosphere. All members are welcomed and encouraged to attend.

    These meetings are a valuable source of friendship, camaraderie and support. Guest speakers can be arranged on request. It's important that we keep in touch, to let each other know what's happening locally, and to help each other out when we have problems.

    We have a SBHI Family Support Worker for our area who is available to help members and to liaise with health officials, schools, employers etc. on our behalf.

    We are aware that members look for information on medical procedures, shunt problems, benefits, education, access, transport, travel, socialising, employment etc. Our SBHI FSW can be contacted through the branch committee, or directly by the following details:

    Paige Parker - [email protected] - 086 819 4790

    The branch organise social outings and arrange for members to attend respite/independence training and weekends away. We are also fortunate to own a mobile home in Bettystown, where members and their families can relax for a week during the summer. We have added a 'safe play area' to the rear of the mobile.

    We sometimes help with extra tuition for members who are having difficulties at school or who have fallen behind because of illness or hospital admission.

    Branch Secretary

    For further information please contact: [email protected]

    SBHI Wexford Branch

    • Chairperson - Mr Ray Smith
    • Vice Chairperson - Mrs Bernie Flood
    • Secretary – Mr Cormac Funge
    • Treasurer - Ms Martina Ivory
    • Member Development Officer – Ms Aoife Nolan
    • Public Relations Officer – Mary Flood

    SBHI Wexford Branch is based in the sunny south east and is run by a group of friends for the benefit of others.

    The Branch provides physiotherapy and home tuition on a one-to-one basis in the person's home after a referral has been made to the Branch. In the past the Branch has organised computer training, also on a one-to-one basis in the home, as well as running swimming lessons in the Ashdown Park Hotel on Friday nights.

    The Branch has a mobile home in Rosslare Strand, which is available for a week's holiday or a weekend break.

    Raymond Smith


    For more information, please contact Vice Chairperson, Mrs Bernie Flood - 087 695 9156

    SBHI Mayo Leitrim Roscommon Branch

    • Chairperson - Mrs. Caroline Henry
    • Vice Chairperson - Ms. Helen Gildea
    • Branch Administrator - Ms. Noeline Ruane
    • Member Development Officer – Ms. Megan Murphy

    For more information, please contact the Branch Administrator, Ms. Noeline Ruane, at: 087 250 6762

    SBHI Donegal Branch

    • Chairperson – Jonny Stewart
    • Vice Chairperson – Marcus Ward
    • Treasurer - Ms Mary Harold
    • Vice Treasurer – Catherine Ward
    • Secretary – Maria McBrien
    • Assistant Secretary – Ann Bennett
    • Youth Officers – Cathal Bennett, Erin Harold

    For more information, please contact Jonny Stewart: 086 214 6381

    SBHI Tipperary Branch

    • Chairperson - Ms Vera Doherty
    • Secretary - Mr Anthony Withero
    • Assistant Secretary - Ms Martina McCarthy

    For more information, please contact [email protected]