SIBIAM was set up in July 2007 as a non-profit charity organization including persons parents (families) and volunteers. The association was co-founded by Prof Dr Amaramalar Selvi Naicker and Dr Yang Mee Eng ( a SB person herself) with a small group of parents who came together with burning desires to support children and adults affected by these conditions. Our main objective is to look after the interest of children and adults with Spina Bifida and its related disorders through practical and meaningful programs and projects. We are also engaged in motivating and encouraging our members to stay strong and live a healthy and meaningful life. We work towards helping people with Spina Bifida realize an active and independent life as members of the community through our planned projects and programmes, such as home visits, conferences, campaigns, family days.

Our motto is “ALWAYS BY YOUR SIDE” represents the association’s goal supporting and encouraging the SBH to stay strong, healthy and independent.

Our mission is to improve and enhance the quality of life of individuals living with Spina Bifida & Hydrocephalus and their families. With the support of dedicated healthcare providers, parents, families, caregivers, and volunteers who are committed to helping SBH thorough:

• Awareness and Education
• SBH support and funding
• Collaboration & Networking
• Advocacy
• Fundraising

Our vision is to become a one stop solutions provider for persons with SBH, family members and friends, through which we can provide an avenue for open communications among members. This is also a platform for the persons and their loved ones to obtain and share relevant information on disease management. Lastly we want to be in a position to organize more and also support activities related to Spina Bifida.

Our Goals

SIBIAM works towards helping people with Spina Bifida realise an active and independent life as members of the wider community. Like most community organisations we rely on government, philanthropic and corporate support. Many of our projects and programs are funded by individuals and family contributions. Any assistance makes a difference to the life of our Spina Bifida community, including allowing us to undertake the following:

• • To create awareness about Spina Bifida and Hydrocephalus and the conditions affecting their lives.
  • To provide support in terms of counseling, physiotherapy needs and medical equipment to support people with SBH.
  • To provide support to SBH and family members to become one stop solution provider to new members at their locality
  • To provide referral services to healthcare professionals who are specialised in SBH care.
  • To create awareness in the general public about the prevention of Spina Bifida especially about the importance of consuming sufficient folic acid during pregnancy.
  • To become a one stop solutions provider for people with SBH, family members and friends.
  • To provide an avenue for open communications among people with SBH, family members and friends.
  • To offer a platform for people with SBH and their loved ones to obtain relevant information on disease management.
  • To organise and support activities related to Spina Bifida.
  • To connect with other global Spina Bifida organisation so that more best practices in care management, medical treatment and resources can be shared amongst the global Spina Bifida community.