Hi I'm Kirsty

I believe more education and awareness is key to ensuring that people with Huntington’s, and their family, are able to engage with community life.

What is your involvement with HV?

I have been a big follower of HV for years, I’ve always been keeping track of what’s going on. In 2019 I decided to run 10km at the Run Melbourne event to raise money for Huntington’s Victoria, I was blown away by the generosity of everyone and was so happy to be able to support the work of HV. Later that year I attended the Huntington’s Gala Ball along with my cousin and a group of my friends and had the best time dancing and being around such a welcoming community.

Why is raising awareness of HD important to you?

Huntington’s has had such a huge impact on my life and my family’s life, but I have realised that most people are completely unaware of Huntington’s Disease and I’m generally met with a blank face when I talk about it. I work in the disability sector and have seen how Huntington’s Disease is still relatively unknown in this area as well. I’ve seen how Huntington’s can isolate people from the wider community and I believe more education and awareness is key to ensuring that people with Huntington’s, and their family, are able to engage with community life.

What’s your experience with HD?
My aunty had Huntington’s Disease and passed away in 2009. Even though there is only a 50% chance of inheriting the gene, all three of her children were diagnosed with Huntington’s Disease. My cousins are incredibly important to me and it’s been hard to watch them go on this incredibly tough journey. Raising awareness of Huntington’s Disease is the small part I can play in supporting my family.