Northcott Spina Bifida Group

Run by Northcott Disability Services, the Northcott Spina Bifida Group provides support and information to individuals with spina bifida and their families living in NSW and the ACT.

Services include:

Supporting members by facilitating contact between families and individuals.
Producing a bi-annual publication, Torque magazine
Distributing information to families, teachers and the general public.
Conducting an annual Spina Bifida Awareness Week campaign (1-7 September)
Subsidising the purchase of incontinence aids and equipment
Maintaining a fully accessible holiday home at Budgewoi on the Central Coast (PDF of flyer)

Click on the link below for more information...

Northcott Spina Bifida Group

What is Spina Bifida?

Spina bifida is a neural tube defect (NTD) and means “split or divided” spine. Spina bifida occurs when the spinal cord fails to complete its development in the early weeks of pregnancy
Spina bifida is the second most common physical disability in Australia. (3)
In Australia each year, one in 1000 pregnancies are affected by a NTD such as spina bifida. (1)
In the year 2004, 58 pregnancies were affected with a NTD in NSW and in the year 2005, 54 pregnancies were affected with a NTD. (2)
There is no cure for spina bifida and people are affected in a variety of ways including walking difficulties (from reduced sensation in the legs to paralysis), bowel and bladder problems and hydrocephalus.
Approximately 90 per cent of children with spina bifida also have hydrocephalus, which results in a build-up of spinal fluid within the brain. (3) This fluid needs to be drained away by a long narrow tube called a shunt, which is inserted into the brain. Hydrocephalus can affect memory and learning ability.
Treatment options for spina bifida and hydrocephalus include shunts, orthopaedic surgery, walking aids, bladder surgery and self-catheterisation.
Some people with spina bifida require a wheelchair for mobility whilst some others use orthoses or braces. Others may also require long term orthopaedic and physiotherapy treatment to strengthen weak muscles and prevent joint deformities.
The cause of spina bifida is unknown however research indicates that up to 70 per cent of cases of spina bifida may be prevented by increasing the intake B-vitamin folic acid at least one month before conception and during the first three months of pregnancy. (3)

References
1. Dr Carolyn West, Staff Specialist at the Spina Bifida Rehabilitation Unit at The Children’s Hospital at Westmead
2. NSW Public Health Bulletin – NSW Mothers and Babies 2000
3. www.asbha.org.au

News

Support Children and Adults with Spina Bifida

The Northcott Spina Bifida Group has recently developed Spinasaurus toys to raise funds for services to support children and adults with spina bifida and to increase the awareness of spina bifida in the community. The stuffed toys feature the Northcott Spina Bifida Group mascot Spinasaurus, who has a break in his spine to represent spina bifida and costs $10.00 each, plus $4.95 for postage and handling.

The toys will be available for sale from August 2007 and officially launched during Spina Bifida Awareness Week 2007 (September 1 to 7). Northcott’s central office in North Parramatta will also sell the toys throughout the year. To purchase a Spinasaurus toy, or for more information, please contact Kayleen Flood on (02) 9890 0990.

Spina Bifida Checklist and Emergency Health Contacts Card

Spina Bifida Checklist The Northcott Spina Bifida Group recently worked in partnership with the Greater Metropolitan Clinical Taskforce and South East Sydney Illawarra Area Health Service to produce a Spina Bifida Health Checklist and Emergency Contacts card.

The advantage of this card over larger health diaries is that it folds down to credit card size with a plastic cover and can easily fit within a wallet or purse. The card also contains specific information about spina bifida and relevant health and emergency contacts to assist people with spina bifida to better manage their health.

A number of cards have already been distributed to Spina Bifida Clinics across NSW and people are encouraged to work alongside medical staff to complete the relevant information.

If you do not attend a spina bifida clinic, but would like to receive a card, please contact Kayleen Flood on (02) 9890 0990. There is no cost for the card.

Spina Bifida Awareness Week (September 1-7)

Spinosaurus with Students The Northcott Spina Bifida Group works in partnership with Northcott’s Marketing, Communications and Media Department to develop an awareness campaign each year. This involves celebrating the achievements of people with spina bifida as well as reminding people about the importance of taking folic acid at least one month before conception and during the first three months of pregnancy.

Spinasaurus, the Northcott Spina Bifida Group mascot, who has a gap in his spine to represent spina bifida, visits school and hopitals across NSW to educate the community about the disability.

Spina Bifida Associations

Australian Spina Bifida and Hydrocephalus Association (ASBHA)
www.asbha.org.au
International Federation for Spina Bifida and Hydrocephalus
www.ifglobal.org
Association for Spina Bifida and Hydrocephalus (UK)
www.asbah.org
The Spina Bifida Association of America (SBAA)
www.sbaa.org

Contact Us

Kayleen Flood (Administration Support)
Phone: (02) 9890 0990
Fax: (02) 9683 2827
Email: kayleen.flood@northcott.com.au