The event focused on establishing the prominence of RSTF. The collaboration behind this launch formed on the common objective to support and financially sustain the lifelong Enzyme Replacement Therapy (ERT) treatment for Rachel Siew. Rachel will be the voice of RSTF to help promote all rare diseases as a national public health priority.
The emcees for the evening, Mr Brian Lariche and Dr Pauline Crawford-Omps spoke about MPS IVA. A stimulating show was presented with many artists performing. A key point was Rachel’s keynote address and a video showing ‘A day in the life of Rachel Siew’ which was filmed by the IACT students. A song composed and recorded for Rachel was performed by Dr James Omps called ‘Tower of Courage’, and a poem was dedicated to Rachel which was recited by a student.
The night continued with music and dancing; performances by Mr Rajan Singham, Managing Director of BAC and the MIRM band, Time Machine, plus a lively mixture of BAC and IACT students themselves, singing and playing great music and including a stand-up comedy act to delight the audience.
