Hi I'm Alexis
Raising awareness of HD is vital to increase the attention and resources our community can offer towards supporting people with HD and finding a cure.
What is your involvement with HV?
I’ve been fundraising for HV by doing fun runs in a campaign called Sweaty4HD. Supporters can choose to donate to Huntington’s Victoria as well as Huntington’s NSW/ACT or QLD. My family live in all three states and several family members have undertaken HD testing in Victoria.
Why is raising awareness of HD important to you?
Raising awareness of HD is vital to increase the attention and resources our community can offer towards supporting people with HD and finding a cure. My family wants to see a cure in the next five years, which we believe is possible if we can harness community and government support, and the approaching revolution in gene technology.
What’s your experience with HD?
My family discovered that my aunt had HD early in 2017. Sadly, her test results arrived in the wake of her death. It was a big shock, and had a lasting impact on us. A huge part of why we think it’s important to raise awareness of HD is because my aunt was not diagnosed or referred to an appropriate specialist until it was too late. My cousin has also tested positive for HD and is an incredibly strong, optimistic and selfless lady. I wanted her to know she was not fighting HD alone – so I started running and fundraising. I’ve been thrilled that the rest of my family has joined in with their own efforts too!