Huntington’s disease changes entire families, yet millions of people have still never heard its name.

We regularly see important television programmes, documentaries, news reports and drama storylines about cancer, dementia, Parkinson’s, Alzheimer’s and motor neurone disease. Those illnesses deserve that exposure.

Huntington’s disease deserves it too.

Where are the programmes?

Where are the conversations?

Where is the national exposure?

Huntington’s can affect a person’s movement, thinking, behaviour, speech, swallowing and independence.

There is currently no cure. Medication may help manage some of the symptoms, but nothing currently available can stop or reverse the disease. Huntington’s is progressive, life-limiting and ultimately fatal.

Because it is inherited, its impact does not end with one diagnosis. While one generation is living with the disease, the next may be facing a 50 percent chance of inheriting it.

Partners become carers. Children watch parents change. Families live with difficult decisions, uncertainty and fear, often behind closed doors and largely unnoticed by the wider public.

I know this because my wife, Sarah, is living with Huntington’s disease, and our two sons each grew up facing that 50 percent risk.

But this petition is not about me, Sarah or one individual family.

It is for every person living with Huntington’s disease. Every carer holding a family together. Every child watching a parent become unwell. Every person awaiting a genetic test result. Every family living silently because explaining Huntington’s disease can feel almost impossible.

We are asking Britain’s broadcasters, journalists and programme makers to give Huntington’s disease meaningful and accurate national exposure.

That could include:

• A conversation with HD families and specialists on a daytime television programme

• Greater coverage through television and radio news

• A properly researched documentary

• An accurate storyline in a soap or television drama, created in consultation with the Huntington’s community

• Interviews and features that allow people affected by HD to tell their own stories

We are not asking for sympathy. We are asking for visibility, understanding and a place in the national conversation.

One television appearance could introduce Huntington’s disease to millions of people. One carefully researched storyline could help viewers recognise what another family is experiencing. One conversation could make an isolated carer or frightened young person realise they are not alone.

Please sign this petition and help us show Britain’s broadcasters that Huntington’s disease can no longer remain hidden.

Huntington’s disease affects whole families.

It is time for those families to be seen.

#TimeToSeeHD

whatishd.co.uk