19. Meg Salisbury - Celebrating Rare Disease Day and raising a child with KAT6A

Inspirational Tales

My guest on this episode is Meg Salisbury, who joined me to celebrate Rare Disease Day. In 2016, Meg's daughter Ginger, was the 1st person in Australia and only the 34th person in the world, to be diagnosed with the rare genetic disease KAT6A. As of the beginning of 2022, there are now 13 people diagnosed with KAT6A in Australia. Meg is on the board of the KAT6A Foundation and also liaises with researchers in Melbourne at Murdoch Childrens Research Institute (MCRI) and Walter and Eliza Hall Institute of Medicine (WEHI), who are working on KAT6A. She also offers support to Australian families, in particular when their child is first diagnosed with KAT6A. In this interview Meg discusses what Rare Disease Day is, why it is important to speak out and raise awareness for rare diseases and what we can do to help. She also shares many insights into how KAT6A affects Ginger, the challenges and joys of being Ginger's Mum and how the parents of children with KAT6A have banded together to help each other. Meg is an absolute gem. She is an open book and is more than happy to answer questions and offer advice to those who need it. Meg's Details: Instagram: @megmajella Facebook: Meg Salisbury KAT6A information: Website: kat6a.org Instagram: @kat6afoundation Facebook: kat6afoundation Podcast Details: Website: inspirationaltales.com.au Instagram: @inspirationaltalespodcast