(TORONTO, ON): June is Spina Bifida and Hydrocephalus Awareness Month in Canada, the perfect time to learn about the reality of living with these complex, lifelong neurological conditions.
“We have come a long way over the last 40 years from the days when newborns with these conditions were not expected to survive,” said Claudio Cinapri, Chair, Spina Bifida & Hydrocephalus Association of Ontario (SB&H). “But, as new needs emerge, SB&H continues to work to ensure all affected Ontarians have the access to the services, supports and resources they need to achieve their goals and dreams. I encourage citizens across the province to get involved in our June Awareness activities and meet some of the amazing members of our community.”
Hundreds of Ontario families live with spina bifida, a neural tube birth defect occurring within the first four weeks of pregnancy, and hydrocephalus, involving an excess of cerebrospinal fluid (CSF) in the brain. Affected individuals and their families face medical complications, physical and social barriers, and financial burdens.
SB&H is raising public awareness about spina bifida and hydrocephalus (sb/h) in June through these initiatives.
Spirit Wheel Walk Run (SWWR): Fostering the connections and acceptance that are so important to people living with sb/h, this event is sweeping the province. Participants set up their own SWWR routes, teams and related events, and proceeds benefit SB&H programs.
Adult Spina Bifida Support Group: This new pilot group offers support, networking and friendship for adults aged 35 years and older. Since most individuals with spina bifida now enjoy a full lifespan, there is a growing need to support adults around issues like employment and healthcare.
Folic Acid & Normal Pressure Hydrocephalus (NPH) Campaigns: Public education about folic acid, which reduces the risk of spina bifida and other neural tube defects by up to 70%, has dramatically reduced the incidence of spina bifida. NPH, a little-known condition affecting one in 200 adults aged 55 and older, is readily treatable but often misdiagnosed as Parkinson’s or Alzheimer’s disease.
Strong. Brave. Human. T-shirts: Designed to prompt dialogue, the shirts can be ordered from SB&H.
Bookmarks: Pick up What Is It? bookmarks from your local library to learn about sb/h.
For more information, please visit www.sbhao.on.ca.
SB&H Director, Development & Promotion
Phone: (416) 214-1056 or 800-387-1575