CEO, Julie Cini founded the Spinal Muscular Atrophy Association of Australia, Inc., after losing both her children to Spinal Muscular Atrophy in 2005 and 2007.
The Association is run by a dedicated small volunteer committee of six. These volunteers represent various fields and bring their own expertise to the table.
SMA Australia is an incorporated Association within the state of Victoria. We are eligible for tax concessions and have tax deductibility status for donations above $2.00. SMA Australia also has authorities to fundraise in Victoria, New South Wales, Queensland, Western Australia, Tasmania and South Australia.
SMA Australia aspires to be the first choice for families and health professionals seeking information about SMA. It is comforting to these families to know we solely deliver information and services pertaining to the disease – We are actively seeking treatment options for families and health professionals to adapt.
The purposes of the Association are:
- To promote awareness of Spinal Muscular Atrophy to the general public, professional services and support networks.
- To promote and provide ongoing support and information to families and sufferers of Spinal Muscular Atrophy.
- To establish a specialist pool of equipment not provided by hospitals, to assist families with Spinal Muscular Atrophy to ease the burden of the disease.
- To help promote and fund care options, possible treatments and research of Spinal Muscular Atrophy.