Shownotes Transcript
Kate and Mandy chat with Dalal, founder of SATB2 Connec)t, an advocacy organisation for people and families affected by SATB2 Associated Syndrome.
SATB2 Connect was inspired by Dalal’s experiences with her daughter Naomi, who has the rare genetic condition. Started in 2021 (during COVID, a few days before Christmas!) SATB2 Connect was created to support those living with SATB2 Associated Syndrome and its symptoms. SATB2 Connect aims to raise awareness, advocate, raise funds and drive research to educate, support and collaborate with researchers, medical professionals, therapists and families.
Dalal talks about the diagnosis journey, finding her ‘advocacy gene’ and reaching out to specialists and researchers at the University of Sydney to partner with them on much-needed SATB2 research, and student project opportunities in OT, speech and biomedical engineering.
Dalal also shares her dreams for the future in supporting people and families with SATB2, including specialist clinics and support and respite options. Thank you Dalal for sharing your story with us.
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