Incorporated as a registered charity in 1973, The Spina Bifida & Hydrocephalus Association of Ontario (SB&H) is the only organization in Ontario providing support, information and education to children, parents, adults, families and caregivers facing extraordinary challenges as a result of spina bifida and/or hydrocephalus (sb/h). Our programs are rooted in the principles of self-help and personal support. We serve the broader community including: parents receiving a pre-natal diagnosis of spina bifida and/or hydrocephalus; women of child-bearing age needing to know about the benefits of folic acid in the prevention of neural tube defects; adults 55+ affected by normal pressure hydrocephalus (NPH); and a wide spectrum of professionals in the social services, medical, health and education fields. We provide an essential range of programs and services throughout the province. SB&H is not government funded, generating 100% of operating revenue from fundraising activities.
To build awareness and drive education, support, care, research, and advocacy to improve the quality of life of individuals with spina bifida and/or hydrocephalus.
All Ontarians with spina bifida and/or hydrocephalus have access to the services, supports and resources needed to achieve their goals and dreams in a society that is sensitive, supportive and responsive to their needs.
Spina Bifida & Hydrocephalus Association of Ontario is committed to providing services that are responsive to the community while meeting the diverse, lifelong needs of individuals with spina bifida and/or hydrocephalus and their families. In the coming three years, SB&H aims to achieve the following:
With a focus on meeting the diverse and multicultural nature of the community, we will continue to address the needs of those affected by both hydrocephalus and spina bifida over their lifespans.
In order to enhance the quality of life and build self-reliance and confidence, we will provide ongoing education to individuals and families about the conditions and their implications.
In addition to this critical education and awareness work, our services will also include guidance, support, referrals, individual advocacy, help to navigate medical, social and education systems, and access to resources. We will continue to provide individual, peer, and group support in person and through various cost efficient and accessible technologies.
We commit to building on our public education and awareness work to ensure appropriate diagnosis, advance better and more effective treatments, promote prevention strategies and build a responsive and compassionate society.
Through ongoing communication, public awareness, media relations, and social media, we will also build public support, strengthen community engagement, and increase investment in our cause.
By fostering strategic alliances, SB&H will build stronger service linkages and better health care responses, enhance public education and awareness, increase community involvement, diversify funding, and expand organizational supporters, corporate partners, and volunteers.
SB&H’s Medical Advisory Board, representing expertise in spina bifida and hydrocephalus, will continue to identify key issues and devise strategic priorities and alliances related to research, education, care, and treatment.
As a member of the Neurological Health Charities Canada (NHCC), SB&H will also continue to participate in government relations strategies and broader systems change to improve the quality of life of individuals with spina bifida and/or hydrocephalus.
SB&H will expand its revenue streams while creatively accessing resources for programs and service delivery. This includes undertaking broad resource development strategies, fundraising, planned giving, corporate partnerships, government funding, and cost-efficient and strategic events and third party initiatives. Priority will be placed on accessing undesignated, multi-year, and large gift support.
Under the leadership of the Board, the organization will continue to build its profile and reputation among investors, funders and donors while expanding its base of community champions and ambassadors. Resource development staff will implement a focused and outcome-based annual fund development program to support this work.
SB&H will continue to be a resilient and responsive organization with strong Board and staff leadership focused on a mission-driven, team approach.
Operationally, the organization’s infrastructure, systems and policies will be integrated and centralized. Support services and programming will continue to be delivered in a cost efficient and effective manner. Staff and Board will continually build the organization’s resources, capacity, and structure to support service responses and desired organizational outcomes. The organization will regularly monitor its progress and continually improve services and operations for maximum impact.
Approved by the SB&H Board of Directors April 22, 2014.