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

Our vision at Dublin Branch, is that people living with spina bifida and/or hydrocephalus can live fulfilled lives. We offer friendship, support, information, social inclusion, funding, respite and more, for anyone who has spina bifida/hydrocephalus, parents, caregivers and family members in County Dublin.

Dublin Branch committee is run by Volunteers, we rely on regular fundraising events to continue to provide for all of our members. If you have an idea for an event or would like to help out at any of our fundraising events please get in touch.

If you would like to register as a member or be included in our regular event updates send an email to: [email protected]


  • Chairperson: Ms. Diane O’Keane
  • Vice Chair: Ms. Karen Gibney
  • Secretary: Ms. Angela Gorman
  • Treasurer: Ms. Louise Larkin
  • Youth officer: Mr. Sean O’Kelly
  • Administration: Ms. Kathryn Caulfield

Support Committee:

  • Ms. Megan McGuckin
  • Ms. Connie Richardson
  • Ms. Ann Richards

Contact Details:

Ms. Kathryn Caulfield (Admin)


Email: [email protected]

SBHI Wicklow Branch

  • Chairperson - Ms Mary DeCourcy
  • Secretary - Ms Fiona Fisher
  • Treasurer - Mr John Graham
  • Minute Secretary - Ms Sinead Bayliss
  • Youth Officer - Ciara O'Donnell

Wicklow Branch support their members in many different ways. Information and education are readily available. We lend support to our members to attend all Branch and National activities (according to funds being available).

We actively encourage participation in social events and also those events which are run to inform on issues such as medical, education, employment to name but a few.

We have access to the SBHI FSW for our region, who works closely with the Branch and our members to ensure that they are getting the service and support that they, their families, and their careers need.

We strive to meet the needs of our members in all walks of life and welcome their opinions and active involvement in the Branch. So, if it is information or just a friendly ear you need the Branch is always only a phone call away.

For further information please contact Branch Secretary, Ms Fiona Fisher - 086 868 6379

Mobile Home for Hire

Wicklow Branch Mobile Home is open to members!

We have a 2 bed mobile which sleeps 2 more on couches if necessary. Located at Borough Mobile Home Park, Rosslare Strand.

Electricity, Gas, Microwave, T.V. etc. (Possible charge for gas cylinders TBC).

Please contact Branch Secretary, Ms Fiona Fisher if interested in booking - 086 868 6379

SBHI Kildare Branch

  • Chairperson - Ms Breda Bell
  • Secretary - Ms Mary Kilgannon
  • Treasurer - Mr Joe Riordan
  • Vice Chairperson - Ms Amanda Reeves
  • Comms Officer - Ms Úna Keightley
  • For further information contact the Branch Secretary, Ms Mary Kilgannon: 086 846 4088 (Text Messages only please)

    Branch Website:

    SBHI Louth Meath Branch

  • Chairperson - Mr Gareth Fitzpatrick
  • Secretary - Ms Jane McDermott
  • Treasurer - Mr Michael Rice
  • Vice Chairperson - Ms Micheline Clancy
  • Youth Officer - Mr Gerard Malone
  • Louth/Meath branch hold regular meetings (usually in Drogheda) where we discuss relevant issues in an informal atmosphere. All members are welcome to, 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:

    Hazel McGeough - [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
    • Secretary - Mrs Tracey Kehoe
    • Treasurer - Mrs Martina Ivory
    • Vice Chairperson - Mrs Bernie Flood
    • Youth Officer - Ms Bernadette 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 further information contact Branch Secretary, Mrs Tracey Kehoe - 087 695 9156 or Vice Chairperson, Ms Bernie Flood - 087 695 9156

    SBHI Mayo Leitrim Roscommon Branch

    • Chairperson - Mr. Liam Newman
    • Vice Chairperson - Mrs. Caroline Henry
    • Secretary - Ms. Noeline Ruane
    • Treasurer - Ms. Helen Gildea
    • Member Advocate - Ms. Mary King

    For further information contact the SBHI Branch Secretary, Ms. Noeline Ruane- 087 250 6762

    SBHI Donegal Branch

    • Secretary - Ms Caroline Lafferty
    • Vice Secretary - Ms Mary Harrold
    • Treasurer - Ms Mary Harold
    • Vice Chairperson - Mr Stephen Lafferty
    • Youth Officer - Mr Marcus Ward

    For further information contact the SBH Ireland Branch Chairperson or Vice-Chairperson: Mr Frank Larkin - 087 740 5617 or Mr Stephen Lafferty - 087 275 9958

    SBHI Tipperary Branch

    • Chairperson - Ms Vera Doherty
    • Secretary - Ms Josephine O'Connor
    • Assistant Secretary - Ms Mary Walsh
    • Treasurer - Ms Martina McCarthy
    • Assistant Treasurer - Ms Bridget Walsh
    • Vice Chairperson - Ms Jacqueline Riordan
    • Youth Officer - Ms Lorraine Doherty

    For further information contact the SBHI Branch secretary, Ms Josephine O'Connor - 087 292 0515