Red hair is clearly in Rachael Brooking's genes, but another more sinister thing is passed down through her family — and that is why she is organising a gingers' world record attempt.

Ms Brooking's red-headed mother died of Huntington's Disease, a genetic progressive disorder that affects generations of families.

She has organised the ranga rally in her home city of Orange, in central-west NSW, in honour of her mother and to help her brother, who has inherited the debilitating and ultimately fatal condition.

Driven by her family's devastating story, she is hoping the money and awareness raised will help towards finding a cure for a disease that is often surrounded by stigma and shame.

Huntington's disease: One family's story

While Huntington's Disease has no connection to the colour of someone's hair, it affects many aspects of a sufferer's life, and people with it suffer physical, emotional, intellectual and psychiatric effects.

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Because it can cause jerky movements and slurred speech, it is often mistaken for someone being on drugs and alcohol.

"The disease is a bit of a brutal combination of some of the higher profile diseases such as Alzheimer's, Parkinson's and Motor Neurone Disease," Ms Brooking said.

For her family, it meant her mother's personality started to be affected and the ability to do tasks such as driving got difficult, but the family did not know what was going on.

"Mum was a gorgeous vibrant redhead who loved music and art and had a real zest for life in her younger years, and with the progressive onset of Huntington's she changed," Ms Brooking explained.

Organiser of the Redhead Hunt 4 HD rally in Orange, NSW, Rachael Brooking and her three children. ( ABC Central West: Melanie Pearce )

Huntington's Disease (HD) facts Usual onset is at age 35-45, but there are cases of juvenile HD, or it can appear as late as 70

Usual onset is at age 35-45, but there are cases of juvenile HD, or it can appear as late as 70 Life expectancy is generally 10-20 years from the onset of visible symptoms

Life expectancy is generally 10-20 years from the onset of visible symptoms The defective gene is passed from parent to child at conception

The defective gene is passed from parent to child at conception If a parent has the gene, each son or daughter has a 50/50 chance of inheriting HD

If a parent has the gene, each son or daughter has a 50/50 chance of inheriting HD Early physical symptoms include fidgeting, twitching, restlessness and clumsiness

Early physical symptoms include fidgeting, twitching, restlessness and clumsiness Emotional or intellectual signs include short-term memory loss, less ability to organise tasks, depression, apathy, irritability and impulsiveness

Emotional or intellectual signs include short-term memory loss, less ability to organise tasks, depression, apathy, irritability and impulsiveness In later stages signs include involuntary movements like jerks and twitches of the head, neck, arms and legs or rigid muscles

In later stages signs include involuntary movements like jerks and twitches of the head, neck, arms and legs or rigid muscles Walking, speech and swallowing become more difficult as the disease progresses Source: Huntington's NSW

The legacy of diagnosis

When Ms Brooking's mother was diagnosed with Huntington's Disease, the family was left reeling, knowing it could have been passed on to younger generations.

Every child of a person with Huntington's has a one in two chance of having the gene; unfortunately, Ms Brooking's brother tested positive, along with others in her extended family.

She does not have the gene, meaning her three children cannot have it.

This month is Huntington's Disease Awareness month, and as well as activities around Australia, Ms Brooking has organised a range of activities in Orange, culminating on September 30 with the Redhead Hunt 4HD Guinness World Record Attempt.

She has no exact number of participants because people do not need to register, but people have indicated they will travel from as far away as Sydney, Albury and Canberra to try to get the most number of natural redheads in the one place.

Ms Brooking has also secured red-headed actor and writer Stephen Hall as master of ceremonies for the event.

As well as the festival atmosphere of jumping castles and food stalls, the money raised will go towards research into Huntington's.

The Huntington's gene was isolated in 1993, but so far there is no cure.

Building connections and breaking barriers

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The publicity and social media buzz around the redhead rally and other events to raise awareness has also helped connect families affected by the disease.

Huntington's NSW regional support social worker Julie Leto works with those families and the 600 people in NSW and the ACT who have the disease.

She said the figure was an underestimate, partly due to the stigma surrounding the disease and a lack of reporting.

"People aren't aware of it in their family so they aren't aware of the inheritance coming to them, and other people just haven't yet got to the point of being involved in any services, so we're not able to count them as numbers," Ms Leto said.

However, Ms Leto said the awareness raising that had happened recently, particularly by Ms Brooking, was helping connect families, and a new invite-only Facebook page had been established.

"People have started to particularly come towards Rachael and ask to talk to her," Ms Leto said.

A father and son: The story of juvenile Huntington's

Another aspect of the focus put on to Orange is that people in central-west NSW with a connection to the disease have started to form a loose network.

Harley Smith (second left) who has juvenile Huntington's Disease, with his late father Shane (seated), mother Katherine McDowell, half-siblings and stepfather. ( Supplied: Katherine McDowell )

Among them is Katherine McDowell from the nearby town of Cowra, who said she and her former partner broke up because his then-undiagnosed Huntington's Disease had made him aggressive and unpredictable.

I knew something was wrong; he knew full well that his father had the condition, but I think at that time he wasn't ready to go and get the test done," Ms McDowell said.

After they split, her former partner had the test, revealing he was positive.

He died in 2015, but not before it was revealed he had passed it on to their son, Harley, who was then diagnosed with juvenile Huntington's Disease at the age of 11.

Harley Smith, who lives with juvenile Huntington's Disease, at a fundraising football match in 2014. ( Supplied: Men of League Foundation )

It has been a difficult road since then — one year Harley had 18 broken bones due to falls and accidents caused by the disease.

When he was younger, people thought he was naughty because of his behaviour, and in more recent years Ms McDowell has been asked if her son is on the drug ice due to weight loss associated with the condition.

Harley is now 17 and works two days a week.

While he gave up rugby league — the game his mother said he loved "beyond words" — when he was first diagnosed, he has returned to playing.

"Healthy eating and exercise are the only two things to help delay onset much, so that's what we've been sticking to," she said.

Ms McDowell said it was encouraging to see the level of support for Huntington's Disease families through the Orange redhead rally and other events.

"When you're going through that, because it is such a rare condition and it's so rare for someone to get it so young, to actually have people supporting that and awareness around it has been phenomenal," she said.