Who we are? Spina Bifida Association Malaysia
SIBIAM was set up in July 2007 as a non-profitcharity organization including patients, parents (families) and volunteers. Our main objective is to look after the interest of children and adults with Spina Bifida and its related disorders through practical and meaningful 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, etc.
Our motto is “ALWAYS BY YOUR SIDE”. “The Willing Spirit” represents the passion of the association to motivate and to encourage spina bifida people to stay strong will themselves to live as healthily as possible.
Our mission is to improve the life chances of a person with Spina Bifida through practical projects. We actively develop, seek funding for and coordinate projects that are made available to individuals with Spina Bifida (and their families) in Malaysia. We work collaboratively with parents, volunteers and medical personnel in representing the Malaysian Spina Bifida community.
Our vision is to become a one stop solutions provider for Spina Bifida patients, family members and friends, through which we can provide an avenue for open communications among members. This is also a platform for the patients 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.
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 the conditions affecting life of people with Spina Bifida.
- To provide counseling services to people with Spina Bifida, their family members and carers.
- To provide support in terms of medical counseling, physiotherapy needs and medical equipments to support people with Spina Bifida patients.
- 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 Spina Bifida patients, family members and friends.
- To provide an avenue for open communications among people with Spina Bifida, patients, family members and friends.
- To offer a platform for people with Spina Bifida patients 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 organization so that more best practices in care management, medical treatment and resources can be shared amongst the global Spina Bifida community.