We are the peak body for SMA in Australasia. Providing timely access to best practice resources, support advocacy and access to treatments for the SMA community.
Our vision is for our community to be aware of SMA and supportive of those individuals and their families.
To pro-actively care, support and provide best practice resources for all SMA communities.
Care: for those directly and indirectly affected by SMA, i.e. people living with SMA and their families and healthcare professionals.
Provide: to assist in providing services to those affected by SMA, or helping them navigate the system for services.
Support: to provide a holistic approach and support the mental, physical and emotional wellbeing of those living with SMA.
Improve the care and access to treatment for all Australians living with SMA, by offering a range of community based initiatives that result in the SMA community being cared for, heard, supported and empowered.
Empowering our community to be ambassadors for SMA to educate the wider public, to increase the profile of the condition.
Ensure the voice of the SMA community is heard by advocating to key stakeholders to achieve access to carrier screening, timely diagnosis, and access treatment options.
Support research initiatives that improves diagnosis, treatment and preventions for SMA.
Maintain and grow sustainable fundraising practices to enable us to achieve our mission.
Tolerance: towards others without passing judgment.
Differences: acknowledge these within our community.
Accountability: for actions and decisions.
Understanding: to SMA families and each other.
Respectful: of personal choices and decisions.
Honesty: to our families and within our business.
Communication: to become aware and share best practice SMA related information and resources for the community.
Inclusiveness: to include all families living with SMA, in the wider SMA community.