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Supporting children to have a Better life for their WHOLE life

PACS1 is an ultra-rare genetic condition with no cure. We're raising the money to build the Whole Life Village: a community where children with PACS1 and other complex needs and disabilities can live, learn, work and be cared for all their lives, with their families close by.

DonateExplore the Village
£59,974 raised towards £150,00040%

Updated October 2026. Donations are handled securely by JustGiving.

Concept visualisation of the Whole Life Village: a gated entrance leading to a central hub and fountain, with homes, gardens and countryside beyond
Concept visualisation of the Whole Life Village
Nina, Roy's daughter, who has PACS1, smiling in a floral top at a marina

What is PACS1?

PACS1 syndrome is caused by a change in a single gene. It happens by chance rather than being inherited, and it affects how a child moves, speaks, eats and learns.

About half of children with PACS1 develop epilepsy, and some need help with feeding, including tube feeding. They will need care for their whole lives, and many will eventually have to move into residential homes away from their families. The Whole Life Village is our answer to that: a place where children with PACS1 and other complex needs and disabilities can stay close to family for life.

Around 250
children diagnosed worldwide, with many more still undiagnosed
No cure
and the condition was only first described by researchers in 2012
For life
children with PACS1 need support into adulthood and old age
Read more about PACS1

Inside the Whole Life Village

A safe, self-sufficient Village where children with PACS1 and other complex needs and disabilities can live with homes, therapy, learning, work and family life side by side. Select an area to see what it holds.

More about the Village
Concept visualisation of the Whole Life Village: stone cottages, a central hub, a sensory water garden, a hydrotherapy building and allotments set in open countryside
Concept visualisation of the Central Hub: a timber and glass building with a café terrace and a fountain
Concept visualisationCentral Hub forecourt

Zone 1: social and operational core

Central Hub

Where every visit starts. Reception and security sit alongside a café, communal rooms and quiet spaces where families can meet.

  • Reception and security
  • Café and dining
  • Family meeting rooms
  • Shared activities, linked to the shops and gardens
Wacky Races 2026: drivers standing beside their branded sports cars at the top of a mountain pass
The Wacky Races 2026 tour

The 2026 rally covered more than 2,000 miles and raised £48,000.

Wacky Races is our charity car rally through Europe, and our biggest fundraiser. The 2027 tour runs from 7 to 13 June, with drinks, a sailing regatta and more in between.

Join the 2027 rally

Coming up

  • 19 Nov2026

    Wacky Races drinks

    An evening get-together for the Wacky Races community.

    Register interest

  • 7–13 Jun2027

    Wacky Races car tour

    Seven days on the road through Europe, raising money for PACS1.

    Register interest

  • 2 Sep2027

    Wacky Races sailing regatta

    A day of team sailing, with an optional stay the night before and after.

    Register interest

Meet Anya and Roy

Watch their story, and why the Whole Life Village matters so much to them.

Read our story
Roy and Anya talking at a table, from the Meet Anya and Roy videoMeet Anya and Roy, 2 min