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I'm walking the 2021km for Scottish Huntingtons Association in 2021 - inspired by my nephew, Keir. You can read his story and his appreciation of the support he's received from SHA below. 

But what is Huntingtons disease?  

An INCURABLE neurological condition with complex physical and mental symptoms.

Includes deterioration in motor function which leads to reduced control over movement and a LOSS OF ABILITY TO WALK, TALK, EAT AND SWALLOW.     

 The disease also causes mood and personality changes and, in some cases, serious psychiatric illness.                

As it progresses, people with Huntingtons disease can require 24-HOUR CARE meaning they are no longer able to stay in the family home with loved ones. 

EACH CHILD OF AN HD PARENT IS AT 50% RISK OF INHERITING THE FAULTY GENE THAT LEADS TO HD. 

Excerpt from KEIR's story, printed in SHA magazine -
“My dad Mark had Huntington’s disease and Mum cared for him really well at home for as long as possible. At the same time, she was raising me and my two older brothers, Logan and Morgan, while working as a nurse and studying for a degree. 

Before the disease took hold, Mark worked as a university environmental research assistant and enjoyed boxing to keep fit. He was diagnosed soon after Keir was born and the three boys watched as HD robbed their father of the ability to walk, talk and swallow.

“When I was younger, I didn’t really understand that Dad was very ill. He had severe symptoms but I didn’t know him any other way so to me he was my dad and that’s how he was,” said Keir, from Falkirk.
“Looking back, I realise how bad it was for him and how hard it was on my mum. We had carers coming in and out but eventually Dad went to live in a care home. By then I knew that we wouldn’t have Dad for long and he died in 2017 aged just 42.”

Keir credits the support of his family and SHA’s youth service (SHAYP) for helping him to cope.
“I was about eight years old when I first began meeting up with Grant, my SHA youth advisor,” said Keir. “Knowing what Dad went through, it’s scary knowing that I’m at risk too so it’s good to have Grant to answer my questions, reassure me that I am doing OK, and just be there when I need him.
“He’s helped me to learn more about Huntington’s disease, including what to expect, and he encouraged me to go to the annual summer camps. I’ve been seven times now and have just signed up as a SHAYP youth ambassador so I can support other young people.