SATB2 - Associated Syndrome Awareness Day - Yearly on August 22nd 2021

Teleigha ross made this Freedom of Information request to Local Government Ministerial-Mayors Advisory Panel

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Response to this request is long overdue. By law, under all circumstances, Local Government Ministerial-Mayors Advisory Panel should have responded by now (details). You can complain by requesting an internal review.

Dear Local Government Ministerial-Mayors Advisory Panel,

WHEREAS, SATB2-Associated Syndrome (SAS) is a rare genetic condition resulting in a change of the SATB2 gene found on the second chromosome, in either a deletion of the gene, a mutation of the gene, or a duplication of the gene,

WHEREAS, there are roughly 500 confirmed cases worldwide, with an estimated prevalence of 1 in 30,000-50,000 individuals,

WHEREAS, individuals with SAS often experience medical problem and concerns, including, but not limited to, developmental delays, speech issues up to and including lack of speech, bone density issues, feeding difficulties including the need for feeding tubes, teeth abnormalities, and epilepsy,

WHEREAS, while the public is aware of other rare diseases and conditions, there is limited awareness of SAS, the burden of awareness has fallen to the shoulders of those impacted by SAS either indirectly or directly,

WHEREAS, the non-profit, SATB2 Gene Foundation, is dedicated to increasing awareness and education of SAS as well as supporting research efforts in order to support and benefit individuals with SAS and their families and support systems, and

NOW, Therefore, I, and satb2 Gene Foundation hereby proclaim, August 22, 2021 as SATB2-Associated Syndrome (SAS) Awareness day in Australia and world wide.

If you could help me to help our son with more awareness we would be forever grateful, Thankyou

Yours faithfully, Teleigha Ross and Adam Ross - Parents to our amazing little Derek Ross 4yrs with Satb2 !