Why the Rett Syndrome Association of Australia needs friends
The Rett Syndrome Association of Australia Inc.(RSAA) invites members of the wider community to become Friends of Rett Syndrome and use their influence to further the work of the RSAA and act as influencer on behalf of Rett syndrome in Australia.
Rett Syndrome is a very rare condition affecting about 1 in 15,000 live births and so, in Australia, Rett Syndrome is largely unknown. Through its members, the RSAA has had some success in raising funds to support research, specialist clinics and clinical trials. However, raising awareness is absolutely vital and the RSAA is reaching out, beyond the Rett Syndrome community, to partner with people in the business and industry world and especially in government.
Being able to influence government, especially as new treatments and drugs emerge from research, could make the difference between receiving the life changing treatment and/or drugs and not receiving them.
The RSAA is a very small charity managed entirely by volunteer parents, grandparents and other community members with a personal interest in Rett Syndrome and its members have limited ability to do more than they are currently doing to support Rett Syndrome in Australia.
Friends of Rett Syndrome as Influencers
If you are someone who
- works in a relevant ministerial office
- works in University research groups specialising in Rett syndrome related conditions
- is on a P&C Committee that has a local State or Federal member on its committee or steering group
- belongs to a sporting club that has members in very influential private sector roles e.g., senior staff in a bank.
- is a neighbour of someone in the above mentioned groups
- may have gone to school with someone in the above mentioned groups
then you might be able to represent or assist the RSAA to influence the government to support research or large corporations to add Rett Syndrome to their community outreach programs.
Let’s get started!
If you believe you can be a Friend to Rett Syndrome you can contact any member of the RSAA committee by sending an email to their attention at [email protected] and discuss how you would like to help.
We would love to hear from you!