Tony’s Huntington’s result and the £1m Cornwall respite centre plan

Tony knew exactly what a positive result could mean before it came back. He had already watched Huntington’s disease take his granddad, his dad and both of his uncles.

The result was positive.

What he did next is the subject of a new episode of The Real Start Up Stories, a Cornwall podcast about local businesses and the people behind them. This one has very little to do with business plans.

A 50% chance, and a 12-month wait

Huntington’s disease is hereditary and incurable. If one parent carries the Huntington’s gene, each of their children has a 50% chance of inheriting it.

Tony grew up with that reality. On the podcast he talks about eventually deciding to take the genetic test himself, the 12-month testing process, and how his three siblings each dealt with the possibility of carrying the gene in very different ways.

The conversation moves on to what happens when symptoms begin, the mental health impact of knowing what may lie ahead, and the particular challenge of trying to live fully when you have already seen what the disease does within your own family.

The care bills behind HD Livin

Tony’s experience of the care system became one of the driving forces behind HD Livin, the charity he created to support families affected by Huntington’s disease and other neurological conditions across Devon and Cornwall.

Specialist respite care cost his family roughly £2,000 to £2,500 a week. At one point, a care home was unable to cope with the level of care required.

Those experiences shaped his determination to build better support for other families.

£130,000 raised towards a £1 million centre

Through HD Livin, Tony has helped raise more than £130,000 towards a £1 million respite centre in Cornwall. The charity also gives people and families affected by neurological disease access to free counselling.

The fundraising has taken him out of a plane and up mountains. He has done a skydive, the Three Peaks Challenge, Everest Base Camp and a Land’s End to Plymouth challenge.

Living with what you’ve already seen

One question runs through the whole episode. How do you live in the present when you have already seen what the future could look like?

Host James is known for asking the questions people are often thinking but don’t always say out loud. The result is a raw, personal conversation about fear, family, mortality, mental health, caregiving and purpose, and about how Tony chose to use what happened to his family to help other people.

His start-up didn’t come from a business plan. It came from something much closer to home.

About The Real Start Up Stories

The Real Start Up Stories was created by business owner James and his friend Audrius, a professional videographer and photographer, to showcase Cornwall’s independent businesses, charities and entrepreneurs, and the real stories behind them.

The pair hope that honest conversations will give aspiring entrepreneurs an insight into what starting something from scratch really involves, and some comfort in knowing the journey behind a successful organisation is rarely straightforward.

The show has passed 3 million views across platforms including YouTube, Amazon Music and Spotify, and its creators say it is fast becoming the South West’s most viewed podcast platform.

New guests can enquire through The Real Start Up Stories website. Businesses interested in sponsoring the show can contact James at [email protected].