So after saying I will never run for Charity, I finally have a reason to, I just wish I didn't.

In the last few weeks my Mum has been diagnosed with final stages of Huntingtons Disease (HD).

If there was Top Trumps on the worse disease you could get, then this one would be up there. It's a fairly 'new' disease and as such, does not receive a lot of funding or recognition. HD is a relatively rare, inherited, fatal disease that gradually kills off nerve cells in the brain, leading to loss of language, thinking, reasoning, memory, co ordination and movement. 

Huntington’s disease, is a degenerative condition described as having motor neurone disease, schizophrenia, Parkinson’s and Alzheimer’s disease all at the same time. It causes changes in the brain affecting movement, feelings, thinking, eating and speech.

Huntington’s affects generations of families. Anyone who has a parent with Huntington’s has a 50:50 chance of inheriting the faulty gene that causes the disease; it doesn’t skip a generation, so if a child tests positive they will develop Huntington’s. It’s like tossing a coin.

 As Huntington’s is so rare and little known, people with the disease and their families can often feel isolated and can struggle to access the support and services they need. There is also historic stigma associated with the disease. Huntington’s Disease Awareness Week aims to help bring the disease out of the shadows.

Funding is extremely low for the disease and awareness even around medical staff is poor. 

And that's where I come in. My goal is to firstly raise awareness of this horrible disease but also to raise funds to enable more research into a cure. I do this all in my mum's name. She has given me so much in my life and now its time to do something for her. I decided to put my running to good use and by entering 4 to 5 marathons within 12 months, I hope to raise funds and also awareness. My plan is to hold various charity events (bingo, quiz nights, cake sales etc..) I am entering the following marathons as part of a year long challenge:

Milton Keynes 6/5/19

Berlin 29/9/19

Portsmouth 23/12/19

London 2020* all being I get a place in the ballot or charity place

I know this sounds corny and we have all heard this before, but I genuinely mean this - if you can spare any funds no matter how much, then please sponsor me.

Thanks to everyone in advance. And please click on the links below to find out more about Huntington's Disease.

www.hda.org.uk

Thanks for taking the time to visit my JustGiving page.

*So lockdown happened and I was unable to run London Marathon that would have finished this challenge - I instead ran 3 more virtual marathons and have now started the 3 peak challenge. I am still hoping to end this challenge by running VMLM in October for HDA. My story is still the same as below, but my has deteriorated in lockdown, she can not move and is wheelchair bound, and dependant on care 24/7. Her memory is nearly gone, but there are funny moments still to be had. Like when she was sat in her wheelchair in the lounge with my sister and she thought she was at a Tom Jones concert waiting for him.

I managed to run the ACTUAL London marathon last October and finish this challenge...however I have only just begun! I am now running Brighton in 2022, Abingdon and Portsmouth marathon to raise funds and awareness. I also have something very special planned in 2023 to round off this latest challenge.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.