Who we are :

Parents of children with Sturge-Weber Syndrome and adults with Sturge-Weber Syndrome getting together to compare experiences, support each other and learn about SWS from each other.

What we do:

• Provide support and information to individuals with Sturge-Weber Syndrome and their families throughout Australia.
• Encourage a family support network and link families in close geographical regions or with similar circumstances; with respect to confidentiality.
• Provide a means of maintaining contact and providing information through a regular newsletter.
• Be a resource for health professionals interested in supporting families afflicted with Sturge-Weber Syndrome.

How we do this :

• Phone support
• Email support
• Link with the Sturge-Weber Foundation, USA
• Source of SWF literature
• Referrals from health professionals
• Maintain a confidential database of Australian SWS families
• Quarterly newsletter called "Reaching Out"

Funding:

We are a non-profit group who rely on donations and grants for funding. There is no cost to members. If you would like to donate to the support group please contact us.

Newsletter:

A quarterly newsletter called 'Reaching Out' is provided free to members. This contains family stories, articles about treatment options, and general information.

To subscribe to 'Reaching Out', email us at aswsg@alphalink.com.au with your postal address.

Reaching Out is a newsletter written by SWS families for SWS families. If you would like to share your story or contribute in some other way to the newsletter please contact the editor on the above email address.

Contact:

Jo Stanford

Coordinator Australian Sturge-Weber Support Group
and Australian Representative of the Sturge-Weber Foundation, USA

Email: aswsg@alphalink.com.au

Phone: (03) 9762 4630
(before and after hours)