My name is Jo, I'm 30 years old, and last year I discovered that I am "gene positive" for Huntington's Disease; meaning that at some point in my near future, I will start to exhibit symptoms and one day I will inevitably die of this rare, degenerative disease.

I devastatingly lost my Dad (whom I had inherited it off) very suddenly, at the too-young age of 50, to a heart attack. I never got the chance to talk to him about it.   

Huntington’s disease is a rare, inherited illness caused by a faulty gene in a person's DNA. It is a disease that that causes the progressive breakdown (degeneration) of nerve cells in the brain. It causes movement dysfunction, cognitive disorders, and psychiatric decline. Once symptoms begin, the disease gradually progresses, so living with it means having to adapt to change, taking one day at a time, until death through related complications.

This is my DNA. It is literally in my blood, and will effect how I live the rest of my life.
There is literally nothing I could ever do that would change it, so why treat it like a death sentence?
It has just made me see that I needed to live the life I want, and appreciate everything to the full.

Not enough is known about this disease, but I want to be one of the people to change that.
We NEED to be sharing the information, experiences and opinions on this.
There is NO CURE. BUT ten, even five years a lot of time for there to be some great leaps in research. There already has been, in the last twenty.

So, at the end of 2023, will be trekking, climbing, camping and kayaking my way through the avenue of volancoes, in Ecuador, at an altitude of 4500m! I will be ground camping with a team of 10 strangers. This will physically be one of the most challenging things I have EVER done. But I am going to do it, while my body is still fit enough to do so! 

This is me. Raising awareness, facing the challenges I will face through the rest of my life head on, as well as facing exciting new ones, raising funds for the important work the HDA do and seeing some amazing things while I do it!

(I have listed full information  regarding Huntington's Diease and the HDA below, after my story, so please, have a look and learn all about it!)

The Huntington's Disease Association supports anyone who is affected by Huntington's disease across England and Wales. We pursue the best possible care; provide training & advice to families and professionals; raise awareness, and promote research towards better treatment and care.