Hi I'm Emily
Increasing awareness of HD and it’s devastating impacts on not only those suffering it, but the families of those affected too is one of the first steps to change
What is your involvement with HV?
In 2019 my involvement with Huntington’s Victoria began when I ran a Half Marathon in the Great Ocean Road Running Festival. I chose to fundraise for the event and raised over $2,000 for Huntington’s Victoria.
Why is raising awareness of HD important to you?
Raising awareness for Huntington’s Disease is important to me as I have discovered it is relatively unheard of in the general public.
Increasing awareness of HD and it’s devastating impacts on not only those suffering it, but the families of those affected too is one of the first steps to change. The more people who know about HD, will help offer greater support. This support will give much needed hope to all involved & the sooner a cure can be found.
What’s your experience with HD?
In 2012 my grandmother was diagnosed with HD, I was only 10 years old. Like much of the public, our family had never heard of the disease. Living in a small rural town in Northern Vic, my family felt quite isolated at the time. To see my grandmothers continual decline is heartbreaking and the fact that there is no cure available to her today. I also see the impact the disease has on my family (especially my grandfather) as they support her the best they can.